It's Thanksgiving Day. I should be writing a mushy post about how thankful I am for so many blessings in our life. And I am thankful. But, I'm thankful every day for that stuff. Seriously. Not a day goes by that I don't think about how different our life could be if we weren't so blessed. So, spending one day to write about it just doesn't mean much to me.
Plus, if you haven't guessed from my serious lack of posting, I'm kinda in a funk. And I think it's a worry-funk. I find myself seriously worried about all kinds of things. Like the state of our country, our economy, the potential of what's happening to seriously affect Tom's job and our livelihood, Harlie, Murphy, Cooper, etc. It's terrible. I am not a worrier by nature - so this is a new change, and one I'm not happy about.
So, to bring you a little up to speed... here are some updates:
BAHA
A few weeks ago Harlie had an appointment with her local ENT to see where we are with her bone anchored hearing aid. Despite knowing the overall time table, I still had my hopes up that we could be on the fast track. I don't know why I do that to myself. But as I've said before, hope is a funny thing.
She had the first surgery August 3rd. The second surgery is usually done three to six months later. The titanium implant has to go through ossification, where the bone pretty much accepts and grows around the implant to secure it in place. Our ENT wants to give her the full six months to ensure that this process happens successfully. While I understand (of course) I was still disappointed. So, we will schedule the next surgery for sometime in February 2013. Then we will have to wait at least six weeks after that for us to be able to actually use it. It will take that long for everything to heal enough that it can handle the pressure of clicking the hearing aid in place. I know that time will be here before we know it, but sometimes it feels like forever.
Plus I know that I have a lot of hope that having this bone anchored hearing aid will completely change her life for the better. That somehow she will hear SO much better that it will improve her life, and our life, immensely. I have a sneaking suspicion that I'm setting myself up for some more disappointment.
Trach Status
So, a few weeks ago, I did my own little sleep study. As you might guess, the results were far from ideal (otherwise I'd be happier).
She fell asleep with the cap on just fine, while laying on her back. Her sats were good - bouncing back and forth between 89 and 90 (which is good for her). Within just a few minutes, her breathing became very noisy. I turned her over on her side to see if that helped. It did not. The noise sounds similar to snoring, but much worse. You can totally tell that her tongue is obstructing her airway. I stayed strong and stood by, hoping that somehow she could control it and get past it. I tried to focus on her pulse ox to let her good numbers keep me strong. There was one moment that she didn't breathe for a second or two, she stirred a bit but didn't awake and then her noisy breathing continued. After about ten minutes or so, my stomach was in a knot and I couldn't take it anymore. I removed her cap and her breathing relaxed and she was so much more comfortable.
I would say that her third jaw reconstruction was NOT a success as far as function goes. Devastation does not adequately describe my feelings. Writing about it earlier was not an option.
So, I e-mailed her oral surgeon in Boston the next day. I told her about our "sleep study" and asked her when Harlie would be ready for the next surgery (I'm assuming it would be jaw distraction). She said that she wanted her to have a real sleep study and if she failed that one, that we could do the next surgery this summer, 2013.
I then e-mailed her ENT in DC and brought him up to date. I explained that we need to have the sleep study ASAP because it takes months and months to get on the surgery schedule (last year we scheduled her surgery in February and the soonest we could get in was August 24th!). We need the results in time to get on the books earlier in the summer.
Our capped sleep study is now scheduled for January 13, 2013.
At some point (okay, on my mind constantly) I need to think about this. Should we proceed THIS summer? Is it too soon - emotionally, I mean? Is it worth ruining a whole summer for her? Jaw distraction (which is what I am assuming she'll have to have) will not be a fun, easy or quick process.
And I have to ask the question - how many surgeries will it take? When do we give up? Will she ever be decannulated? I can't believe she is six years old, has had three major jaw reconstructions, and she is STILL trached and I am asking these questions.
I would never have guessed we would be here six years ago. Again, I'm reminded of how funny hope is. It is amazing that it returns, despite setbacks and/or proof that it shouldn't be there at all. But I am unwilling to live without it. It keeps me going. It makes life easier to live. And I still hope that January's sleep study will pleasantly surprise us.
Jaw distraction - for those that don't know - involves cutting the bone of the jaw on both sides, putting screws and rods on either side of the breaks and then turning the screws to extend the breaks, each day. With every break, new bone grows in its place. Each day the screws are turned again, the new bone breaks, and newer bone grows in its place. This continues for a while (I don't know how long).
Jaw distraction is not something I hoped for. In fact, it's something I've hoped to avoid. I really, really hoped that jaw reconstruction, would do the trick and that distraction would never need to happen.
Jaw distraction can be done internally, or externally. Both techniques come with its pros and cons. Both leave scars that are undesirable (plainly seen on the face, or felt in the mouth). Jaw distraction was not an option before. Her bone was not connected prior to her jaw reconstruction in August. She now has bone to distract, whereas in the past, there was none.
When I think about all that goes into this I still can't believe that wanting her to be able to breathe through her nose and mouth and learn to talk and eat, is such a pipe dream (or a set of pipe dreams?). Who the freak would have known???
About her being Non-Verbal
So, a few weeks ago, we had some friends over. One of them was in the kitchen cooking with Tom. Harlie was on the computer. She pointed to the screen (which was on You Tube) and she signed the letter "M". I asked her for more clues. She then signed the letter "3". I still didn't know what she wanted. She was saying something that sounded like "hm hm hm har" or "hm hm hm heart". Nope, still didn't get it. I went and got her communication device. I put it in front of her (while telling her I didn't understand her - and asking Tom and Mike for help in figuring this out) and she pressed the button for "animals" and then pointed (not pressed) to the button for "zoo". I was frustrated at this point and clearly didn't understand why she would point to a button instead of pressing it. Just press it already!!! She finally pressed it and then pressed "lion".
So, here were the clues:
M
3
some word that has 4 syllables, and ends in a "har" sound
Zoo
Lion
And I'm embarrassed to say that I STILL didn't get it!!! But neither did Tom or Mike, so I wasn't alone. I finally gave up and felt so horrible and sad and frustrated that I left the kitchen table. I happened to walk past the dining room and I just happened to spot a DVD laying on the table.
It was Madagascar 3.
A-HA!!!
I grabbed it and took it back into the kitchen and asked Harlie if that is what she wanted and it WAS!!! Hallefreakinglujah!!!
Just minutes later Mike asked to see the necklace I was wearing. It reads, "A mother knows the words her child cannot say."
I wish.
It kills me that her asking for freaking Madagascar 3 took so much time and energy - for the both of us. Especially when she was actually trying to say "Madagascar 3". Two freaking words! And it really illustrates the difficulty in teaching her new things (much more complicated school-related things). Despite how smart she might be.
The other day I think her leg fell asleep. I, of course, don't know for sure as she cannot explain what she feels or thinks. If her leg felt funny, she could not ask me what was going on or why it was happening. Nor could I try to explain it to her.
So many conversations lost. So many learning opportunities lost. So many moments lost. It kills me. Every day this happens and I know it. I am so, so thankful for all that she can do, yet I feel such a sadness for all she wants to do, but can't.
I want to end with something positive.
Today I got to sit at a table with 20 people (give or take). And I got to laugh with my husband, kids, nieces, nephews, siblings (and their spouses/girlfriend), aunt, a few friends and parents. I am thankful. Life is hard. No doubt about that. I worry. A lot. I love. A lot. I laugh. A lot. And I hope. A lot.
Happy Thanksgiving my friends!
Love,
Christy xo
Showing posts with label jaw reconstruction. Show all posts
Showing posts with label jaw reconstruction. Show all posts
Thursday, November 22, 2012
Thursday, September 6, 2012
Adjusting
Things are okay here. Harlie isn't letting the cast stop her, that's for sure. She seems more and more energetic each day. She's definitely still dealing with some pain. And it's always on her right side behind her ear. The drooling is awful. Truly, truly awful. I don't know how she's going to go to school like this.
Speaking of... I've decided to ask for homebound services for her, until she can go to school again. She still needs the supplemental oxygen several times a day. I'm so surprised considering how much she is up and around. But, we take her off for a little while, and then check her sats to see how she's doing. If she's hanging around 80, we put her back on. If she's higher, we give her a little more time and then check her again later. When we put her to bed tonight (Wednesday night), I was hoping she'd be in the 80s, but she was in the high 70s. Ugh. We'll just see how tomorrow goes.
The past few days have been an adjustment for me. She seems to be adjusting faster than I am! School started on Tuesday. I really wanted to walk with Murphy to school. But, school started for our nurse's kids, too, but they go later than my kids. So, she can't get here till later. I was hoping to get Harlie up and walk her down, too. But, that didn't work out. In fact, I was upstairs with her when Murphy went outside and Tom took pictures. Ugh. I feel like I missed it all. I know I shouldn't complain. Heck, I didn't know if I would even be home for the first day. I should be happy!
But, it was still sad to see all the kids, all dressed and excited for the first day - especially siblings - that were going together - and knowing that Harlie wasn't one of them. I don't think I'm ever going to be good with the fact that Harlie can't go to school with her brothers.
Cooper will go to preschool four days a week. But, he doesn't start until next week. Personally, I think that's insane and just plain cruel to the parents, and the kids. WTH? Why couldn't they start at the same time??
So, after Murphy left (on Tuesday), I spent most of the day walking in circles around my house looking at all the stuff that I was supposed to be doing - unpacking, putting away, washing, etc. I literally did NOTHING. I had no focus and no energy. Today (Wednesday) wasn't much better. But, I did manage to bring down the dirty laundry, sort it and start washing it. So, that's something. I just can't seem to start something AND finish it in a reasonable amount of time. It's not only frustrating, it's terribly inefficient. At one point I looked around and the soap was on the counter for the dishwasher, but I didn't get to put it IN the dishwasher and start it, the sheets were washed, but were not on the bed, and there were clothes in the washer, but the door wasn't shut. It all just seemed too hard to do.
For some reason this morning (Wednesday), I wasn't handling Harlie's drooling so well. I was thinking that maybe I should get her to drink by mouth. Maybe her seeing the squirt bottle, and knowing that she needs to drink it would make her swallow it. But she just squeezed some formula in her mouth and then it just sat there. Ugh. I couldn't make her swallow it. I would tell her and she just shook her head no. I got the feeling that she is scared that it will hurt if she swallows. Frustrated, I called our feeding therapist. We've had her since Harlie was just a few months old. She knows us. And she knows her stuff. I left a message, thinking that she was probably with patients and who knew when she'd be able to call me back. But, it must have been divine intervention - because she just happened to have an opening in her schedule, so she was able to call me right back!
It was so good to talk to her about this. I brought her up to speed with how she's been doing and what's changed about her mouth. One thing I forgot to blog about was a conversation we had with Harlie's oral surgeon. She said that now that Harlie's teeth are aligned, because of her abnormal mouth shape, her back teeth touch before any of her other teeth touch. So, that means she can't close her mouth. Maybe I didn't blog about it because I didn't want to think about it. The chain reaction of that fact is not a good one. And I don't know what that all means. Other than more surgery, obviously. And more challenges in her speech and eating progress. One of the functions I was hoping to gain was the ability for her to chew food. I would think chewing would be more difficult with a mouth where the back teeth touch and none of the others do.
Anyway, the bottom line is that everything about her mouth is different than it was prior to surgery. So, she's going to have to re-learn how to swallow and handle food in her mouth. Plus, she still has some swelling. And pain. She said that if she can't swallow her secretions, then she's not going to be able to swallow a drink, or food. So I need to give her more time. I was thinking she was just being stubborn.
She also said that she just had major surgery. And I had to laugh. It is sad that she can have a major surgery like that and that I am expecting her to be back to herself (and maybe even improved) so soon. What's considered serious vs. minor is so skewed in my mind. You've been home for four days, Harlie, geez, what's your problem?
So, I need to have more patience. And I need to give her more time. And I need to get her back into feeding therapy. She's going to do whatever she can to get us back on her schedule ASAP. I felt so much better after talking to her. I don't always know what to do. And I am so glad that I have some good people in my corner to help me figure this stuff out and make the best decisions we can for Harlie. And when I'm feeling down about things, I remember people like our feeding therapist, and that reminds me how lucky I am. We have such a great support network - in every way. Support in our spirits and support in the technical/medical aspects of raising Harlie. I just couldn't do it without you all!
I certainly didn't expect immediate results from this surgery. I promise! I know it will be months and months (if not a year or more) before we know if this was successful for what we wanted it to accomplish (eating, breathing and speaking). But, I certainly didn't anticipate an open mouth (that couldn't close) and the inability to swallow. One could think swallowing should theoretically be easier if her jaw is more aligned, and pulled out of her airway. But, it's not that easy. And for future reference, it's never going to be that easy.
I'm trying to keep myself from being too scared of the future and from being disappointed so far. I guess I just didn't realize we'd be taking 10 steps back. I'll be okay with that if/when she makes 15 steps forward.
Our feeding therapist gave me some good questions to ask the surgeons about her mouth. So, I need to get that e-mail out. One thing he said we needed to do was to make sure that she opens and closes her mouth a lot to keep that bone in her TMJ from over-fusing (which wouldn't allow any movement). But, we are struggling with that - and have no idea if she's opening it enough (as in actual opening distance vs. quantity of openings) or not. And with her continued pain, I'm a little scared that some fusion has already started. I don't know.
But that's one thing that our feeding therapist said she would help me with, too. She said she'd show me how to get some regular mouth/jaw exercises in her day.
Speaking of exercises and therapy, I need to call her physical therapist, too, and get her back on her schedule. Even though she's walking around well in the cast, when it comes off, she's going to be weaker in that leg.
So, look at the chain reaction of jaw surgery - decrease in ability to swallow, need to add feeding therapy back in our schedule, decrease in leg strength, need to add physical therapy in our schedule, decrease ability in verbalizations for communication, need to add/increase speech therapy in our schedule, can't attend school and need to add homebound services.
I know she looks great and all that good stuff, but all I'm trying to say is that despite all the positiveness, it's still hard right now. It's just plain hard. I want her to be able to talk to me! I want her to get a break from pain and surgeries!
I try to be as positive as I can every day. And I have since the day we found out that things were going to be rough for her (May 5, 2004). But it is a challenge balancing out finding the positive, and being sad about our reality. I mean, no one can be positive about everything all of the time, right??? But, then again, being sad about it doesn't really do any good, either. I just wish we could be nearing the end of surgeries for her. But, it doesn't look that way. So, every time we go through it, we know it isn't our last.
Okay, it has taken me DAYS to write this stupid post and now I feel like it's all choppy and doesn't flow. So I need to just end it. And I really hate to end it with me complaining. I really hate complaining. I have so much to be thankful for. So, please know that I know it will get better in time.
And when Cooper goes to school next week, maybe I can back to running again. That usually makes me feel better. Not immediately, of course. Because usually running hurts while I'm running. But, afterwards, I feel better. I am not one of those runners that runs with a big run all energetic and all like, "Oh, look at me and how good I can run! I'm all bouncy and fast and I'm so good I don't even need water!" Nope.
I'm more like, "Oh God, it's hot. It's so freaking hot. I can do this! One foot in front of the other. Great, I'm doing it and feeling good about myself. Ouch, my back kinda hurts. Okay, big arms. Faster arms means faster feet. Land on my toes. Keep my knees up. Look straight ahead. Chin up. Think strong. I can do this. Beeeeeep! What?! It's only been ONE mile? Are you kidding me???? Shit, it's HOT! I need more water. Cars are passing. Can't walk with cars passing. Damn! What's up with this stupid traffic! Oh, light please turn red, please turn red. UGH! I hope I don't pass out."
Then, I finish. And get home. And then I'm, "Oh, I am so glad I got that out of the way in the morning before it got too hot. Whew! Good run!"
Runners are stupid. No, not really. Most of the time, even when I'm cursing for most of the run, there's something that I actually enjoy. I just don't know what it is exactly. Do I enjoy hurting myself? I don't think so. I certainly don't enjoy it in any other fashion. I guess it's that it IS hard and somehow I do it and feel stronger because of it. And I just think that if I feel strong physically, that somehow I'll be strong mentally and emotionally. Because unlike the run, I don't have a choice in my daily life. I HAVE to be strong for Harlie and for my family.
That's it. Now I really gotta go and get some sleep. I hope to have a much more focused post next time. Thanks for reading!
Much love,
Christy xoxo
Speaking of... I've decided to ask for homebound services for her, until she can go to school again. She still needs the supplemental oxygen several times a day. I'm so surprised considering how much she is up and around. But, we take her off for a little while, and then check her sats to see how she's doing. If she's hanging around 80, we put her back on. If she's higher, we give her a little more time and then check her again later. When we put her to bed tonight (Wednesday night), I was hoping she'd be in the 80s, but she was in the high 70s. Ugh. We'll just see how tomorrow goes.
The past few days have been an adjustment for me. She seems to be adjusting faster than I am! School started on Tuesday. I really wanted to walk with Murphy to school. But, school started for our nurse's kids, too, but they go later than my kids. So, she can't get here till later. I was hoping to get Harlie up and walk her down, too. But, that didn't work out. In fact, I was upstairs with her when Murphy went outside and Tom took pictures. Ugh. I feel like I missed it all. I know I shouldn't complain. Heck, I didn't know if I would even be home for the first day. I should be happy!
But, it was still sad to see all the kids, all dressed and excited for the first day - especially siblings - that were going together - and knowing that Harlie wasn't one of them. I don't think I'm ever going to be good with the fact that Harlie can't go to school with her brothers.
Cooper will go to preschool four days a week. But, he doesn't start until next week. Personally, I think that's insane and just plain cruel to the parents, and the kids. WTH? Why couldn't they start at the same time??
So, after Murphy left (on Tuesday), I spent most of the day walking in circles around my house looking at all the stuff that I was supposed to be doing - unpacking, putting away, washing, etc. I literally did NOTHING. I had no focus and no energy. Today (Wednesday) wasn't much better. But, I did manage to bring down the dirty laundry, sort it and start washing it. So, that's something. I just can't seem to start something AND finish it in a reasonable amount of time. It's not only frustrating, it's terribly inefficient. At one point I looked around and the soap was on the counter for the dishwasher, but I didn't get to put it IN the dishwasher and start it, the sheets were washed, but were not on the bed, and there were clothes in the washer, but the door wasn't shut. It all just seemed too hard to do.
For some reason this morning (Wednesday), I wasn't handling Harlie's drooling so well. I was thinking that maybe I should get her to drink by mouth. Maybe her seeing the squirt bottle, and knowing that she needs to drink it would make her swallow it. But she just squeezed some formula in her mouth and then it just sat there. Ugh. I couldn't make her swallow it. I would tell her and she just shook her head no. I got the feeling that she is scared that it will hurt if she swallows. Frustrated, I called our feeding therapist. We've had her since Harlie was just a few months old. She knows us. And she knows her stuff. I left a message, thinking that she was probably with patients and who knew when she'd be able to call me back. But, it must have been divine intervention - because she just happened to have an opening in her schedule, so she was able to call me right back!
It was so good to talk to her about this. I brought her up to speed with how she's been doing and what's changed about her mouth. One thing I forgot to blog about was a conversation we had with Harlie's oral surgeon. She said that now that Harlie's teeth are aligned, because of her abnormal mouth shape, her back teeth touch before any of her other teeth touch. So, that means she can't close her mouth. Maybe I didn't blog about it because I didn't want to think about it. The chain reaction of that fact is not a good one. And I don't know what that all means. Other than more surgery, obviously. And more challenges in her speech and eating progress. One of the functions I was hoping to gain was the ability for her to chew food. I would think chewing would be more difficult with a mouth where the back teeth touch and none of the others do.
Anyway, the bottom line is that everything about her mouth is different than it was prior to surgery. So, she's going to have to re-learn how to swallow and handle food in her mouth. Plus, she still has some swelling. And pain. She said that if she can't swallow her secretions, then she's not going to be able to swallow a drink, or food. So I need to give her more time. I was thinking she was just being stubborn.
She also said that she just had major surgery. And I had to laugh. It is sad that she can have a major surgery like that and that I am expecting her to be back to herself (and maybe even improved) so soon. What's considered serious vs. minor is so skewed in my mind. You've been home for four days, Harlie, geez, what's your problem?
So, I need to have more patience. And I need to give her more time. And I need to get her back into feeding therapy. She's going to do whatever she can to get us back on her schedule ASAP. I felt so much better after talking to her. I don't always know what to do. And I am so glad that I have some good people in my corner to help me figure this stuff out and make the best decisions we can for Harlie. And when I'm feeling down about things, I remember people like our feeding therapist, and that reminds me how lucky I am. We have such a great support network - in every way. Support in our spirits and support in the technical/medical aspects of raising Harlie. I just couldn't do it without you all!
I certainly didn't expect immediate results from this surgery. I promise! I know it will be months and months (if not a year or more) before we know if this was successful for what we wanted it to accomplish (eating, breathing and speaking). But, I certainly didn't anticipate an open mouth (that couldn't close) and the inability to swallow. One could think swallowing should theoretically be easier if her jaw is more aligned, and pulled out of her airway. But, it's not that easy. And for future reference, it's never going to be that easy.
I'm trying to keep myself from being too scared of the future and from being disappointed so far. I guess I just didn't realize we'd be taking 10 steps back. I'll be okay with that if/when she makes 15 steps forward.
Our feeding therapist gave me some good questions to ask the surgeons about her mouth. So, I need to get that e-mail out. One thing he said we needed to do was to make sure that she opens and closes her mouth a lot to keep that bone in her TMJ from over-fusing (which wouldn't allow any movement). But, we are struggling with that - and have no idea if she's opening it enough (as in actual opening distance vs. quantity of openings) or not. And with her continued pain, I'm a little scared that some fusion has already started. I don't know.
But that's one thing that our feeding therapist said she would help me with, too. She said she'd show me how to get some regular mouth/jaw exercises in her day.
Speaking of exercises and therapy, I need to call her physical therapist, too, and get her back on her schedule. Even though she's walking around well in the cast, when it comes off, she's going to be weaker in that leg.
So, look at the chain reaction of jaw surgery - decrease in ability to swallow, need to add feeding therapy back in our schedule, decrease in leg strength, need to add physical therapy in our schedule, decrease ability in verbalizations for communication, need to add/increase speech therapy in our schedule, can't attend school and need to add homebound services.
I know she looks great and all that good stuff, but all I'm trying to say is that despite all the positiveness, it's still hard right now. It's just plain hard. I want her to be able to talk to me! I want her to get a break from pain and surgeries!
I try to be as positive as I can every day. And I have since the day we found out that things were going to be rough for her (May 5, 2004). But it is a challenge balancing out finding the positive, and being sad about our reality. I mean, no one can be positive about everything all of the time, right??? But, then again, being sad about it doesn't really do any good, either. I just wish we could be nearing the end of surgeries for her. But, it doesn't look that way. So, every time we go through it, we know it isn't our last.
Okay, it has taken me DAYS to write this stupid post and now I feel like it's all choppy and doesn't flow. So I need to just end it. And I really hate to end it with me complaining. I really hate complaining. I have so much to be thankful for. So, please know that I know it will get better in time.
And when Cooper goes to school next week, maybe I can back to running again. That usually makes me feel better. Not immediately, of course. Because usually running hurts while I'm running. But, afterwards, I feel better. I am not one of those runners that runs with a big run all energetic and all like, "Oh, look at me and how good I can run! I'm all bouncy and fast and I'm so good I don't even need water!" Nope.
I'm more like, "Oh God, it's hot. It's so freaking hot. I can do this! One foot in front of the other. Great, I'm doing it and feeling good about myself. Ouch, my back kinda hurts. Okay, big arms. Faster arms means faster feet. Land on my toes. Keep my knees up. Look straight ahead. Chin up. Think strong. I can do this. Beeeeeep! What?! It's only been ONE mile? Are you kidding me???? Shit, it's HOT! I need more water. Cars are passing. Can't walk with cars passing. Damn! What's up with this stupid traffic! Oh, light please turn red, please turn red. UGH! I hope I don't pass out."
Then, I finish. And get home. And then I'm, "Oh, I am so glad I got that out of the way in the morning before it got too hot. Whew! Good run!"
Runners are stupid. No, not really. Most of the time, even when I'm cursing for most of the run, there's something that I actually enjoy. I just don't know what it is exactly. Do I enjoy hurting myself? I don't think so. I certainly don't enjoy it in any other fashion. I guess it's that it IS hard and somehow I do it and feel stronger because of it. And I just think that if I feel strong physically, that somehow I'll be strong mentally and emotionally. Because unlike the run, I don't have a choice in my daily life. I HAVE to be strong for Harlie and for my family.
That's it. Now I really gotta go and get some sleep. I hope to have a much more focused post next time. Thanks for reading!
Much love,
Christy xoxo
Monday, April 9, 2012
Just some updates...
Boston
Everything is still a go for Harlie's fibula free flap jaw reconstruction (I hope I have that right) August 24th. There are a bunch of things we need to do prior to surgery (mouth mold, CT scans, x-rays, pre-op stuff, etc.). I asked them if we could do all that stuff up there at the pre-op a month before surgery instead of having to do it here and mail it back up there. Luckily, a month's time is enough - so we are going to Boston to do all that stuff. She said it's a lot - so it will take us 2 or 3 days. So, around July 24th to the 27th is when we'll be there next. It will be here before we know it.
I HATE that surgery is August 24th. I SO wanted it to be more towards the beginning of the summer. She will most definitely miss the first few days/first week of school. I really hope this won't be a HUGE negative in terms of her making friends and feeling comfortable. And I just realized that if she's still in Boston for the start of school, that means that I will miss Murphy's first day of school, too! Ugh.
Anyway, Harlie definitely qualifies for summer school. So, her hearing impaired teacher is going to focus on the material that they will be covering the first few weeks of school to try to get her as prepared as possible. This is the year that really counts. She needs to keep up with the class as much as possible. So far this year she's missed over 5 weeks of school. That just can't happen next year. (That's more of an out-loud wish versus a statement.)
Pacemaker
A few weeks ago, Harlie came home from an appointment in DC with a Holter monitor. She wore it for 24+ hours. And then I mailed it back to them to analyze. Just for kicks, I thought I'd share with you some of the report I recently received in the mail:
The Holter monitor revealed evidence for sick sinus syndrome, periods of low right atrial rhythm alternating with junctional rhythm, and AAI pacing. At the time of the max heart rate there appeared to be junctional tachycardia to a heart rate of 87 beats per minute. In addition, there were periods of first and second degree AV block with rare AV nodal echo beats. The longest R-R interval measured 2.2 seconds. Atrial sensing was normal. No symptoms were reported in the diary.
While in the hospital, Harlie had a persistent junctional tachycardia making it difficult to program her pacemaker. She was subsequent reprogrammed from the VVI to AAI mode. Given her first and second degree AV block we will reprogram the device to the DDD mode. It may be tricky to ensure that she does not have persistent AV reciprocating possibly resulting in a sustained supraventricular tachcycardia secondary to her AV reciprocation.
Whew! Got that? So, basically her heart is beating, right? Great! That's what I'm getting out of it for now. Until tomorrow...
Sometimes it pisses me off all the crap I have to learn. I don't want to learn this stuff. My brain is at full capacity for medical information. It might look all glamorous. But, it's really not.
Our appointment to see her pacemaker doc is tomorrow. We haven't seen him since the last appointment when they put the Holter monitor on her. So, one thing I can guess from the above report is that they are going to change it to the DDD mode tomorrow. When we were there last they told me that they were going to let her heart rate get as low as 50 beats per minute during her sleep time (8pm to 6am). So, I set her alarm at 45. But three nights it has alarmed at 45 or lower. So, maybe the DDD mode will help with that. I'll just have to tell them and see what they say.
The other day I was at a friend's house and her kids were playing with a real cool toy - Magna-Tiles. I watched them play and thought, Oh, I'm totally going to get these for my kids - they would love them!
And then I remembered. Harlie can't play with magnets. Damn. Some things just hurt. No getting around it.
Her steri-strips finally came off her incision. I think her incision looks fine, medically speaking. But, honestly, I think the whole area looks awful. It's all bumpy, or hilly, rather. It just looks weird. She just doesn't have enough fat to hide the generator, so it protrudes. And the incision almost is concave in one area. Add that to the protruding bony spot in her old sternotomy area and... like I said, it's weird looking. It's just not what you picture when you think of how a 5-year old's chest should look.
When Harlie went back to school after the pacemaker surgery, she lifted up her shirt and showed a friend her "boo boo." When Terri told me that I almost fell over. She has NEVER done that before. And showing people boo boos is a completely normal 5-year old thing to do! She has definitely been WAY more aware of her incision this time - much more so than ever before. I think at first I was interpreting that as pain or discomfort for her - but now I think it's just maturity. And her last major surgery was on her back - and she couldn't see it (thank God!). Oh, I don't want to even think about her next one (jaw).
ENT
So, I finally contacted Harlie's ENT in DC and came clean about her wearing a cap during the day (he didn't know). I also asked about surgically placing a bone anchored hearing aid (BAHA). We will need to meet with the audiologist there to see if Harlie's skull is ready for it. I think it has to be a certain thickness or something before they can do it. I know that doing the BAHA surgery this year would be too much. The Pacemaker, BAHA and jaw reconstruction - all within 9 months or less - is probably too much. But, there's a part of me that says waiting another year to do the BAHA is too long. I've heard that you have to wait three months before you can use the anchor (to let it heal) so, no hearing aid can be worn on that side for that time (which means most get that surgery close to the summer). And I've heard that kids who wore a soft band one and then got a BAHA said that the hearing quality is so much better with the BAHA. To lose a whole year of better hearing - during a foundation-building year - seems unwise.
Sometimes the decisions we have to make really make me mad. It is harder than you would think to balance her overall comfort/happiness with what's best for her in the big picture. Reminds me of this post.
Anyway, that's it for today. I have to vacuum the downstairs - for the millionth time - because Rooney puts anything and everything in his mouth.
Thanks for reading!
~Christy
Everything is still a go for Harlie's fibula free flap jaw reconstruction (I hope I have that right) August 24th. There are a bunch of things we need to do prior to surgery (mouth mold, CT scans, x-rays, pre-op stuff, etc.). I asked them if we could do all that stuff up there at the pre-op a month before surgery instead of having to do it here and mail it back up there. Luckily, a month's time is enough - so we are going to Boston to do all that stuff. She said it's a lot - so it will take us 2 or 3 days. So, around July 24th to the 27th is when we'll be there next. It will be here before we know it.
I HATE that surgery is August 24th. I SO wanted it to be more towards the beginning of the summer. She will most definitely miss the first few days/first week of school. I really hope this won't be a HUGE negative in terms of her making friends and feeling comfortable. And I just realized that if she's still in Boston for the start of school, that means that I will miss Murphy's first day of school, too! Ugh.
Anyway, Harlie definitely qualifies for summer school. So, her hearing impaired teacher is going to focus on the material that they will be covering the first few weeks of school to try to get her as prepared as possible. This is the year that really counts. She needs to keep up with the class as much as possible. So far this year she's missed over 5 weeks of school. That just can't happen next year. (That's more of an out-loud wish versus a statement.)
Pacemaker
A few weeks ago, Harlie came home from an appointment in DC with a Holter monitor. She wore it for 24+ hours. And then I mailed it back to them to analyze. Just for kicks, I thought I'd share with you some of the report I recently received in the mail:
The Holter monitor revealed evidence for sick sinus syndrome, periods of low right atrial rhythm alternating with junctional rhythm, and AAI pacing. At the time of the max heart rate there appeared to be junctional tachycardia to a heart rate of 87 beats per minute. In addition, there were periods of first and second degree AV block with rare AV nodal echo beats. The longest R-R interval measured 2.2 seconds. Atrial sensing was normal. No symptoms were reported in the diary.
While in the hospital, Harlie had a persistent junctional tachycardia making it difficult to program her pacemaker. She was subsequent reprogrammed from the VVI to AAI mode. Given her first and second degree AV block we will reprogram the device to the DDD mode. It may be tricky to ensure that she does not have persistent AV reciprocating possibly resulting in a sustained supraventricular tachcycardia secondary to her AV reciprocation.
Whew! Got that? So, basically her heart is beating, right? Great! That's what I'm getting out of it for now. Until tomorrow...
Sometimes it pisses me off all the crap I have to learn. I don't want to learn this stuff. My brain is at full capacity for medical information. It might look all glamorous. But, it's really not.
Our appointment to see her pacemaker doc is tomorrow. We haven't seen him since the last appointment when they put the Holter monitor on her. So, one thing I can guess from the above report is that they are going to change it to the DDD mode tomorrow. When we were there last they told me that they were going to let her heart rate get as low as 50 beats per minute during her sleep time (8pm to 6am). So, I set her alarm at 45. But three nights it has alarmed at 45 or lower. So, maybe the DDD mode will help with that. I'll just have to tell them and see what they say.
The other day I was at a friend's house and her kids were playing with a real cool toy - Magna-Tiles. I watched them play and thought, Oh, I'm totally going to get these for my kids - they would love them!
And then I remembered. Harlie can't play with magnets. Damn. Some things just hurt. No getting around it.
Her steri-strips finally came off her incision. I think her incision looks fine, medically speaking. But, honestly, I think the whole area looks awful. It's all bumpy, or hilly, rather. It just looks weird. She just doesn't have enough fat to hide the generator, so it protrudes. And the incision almost is concave in one area. Add that to the protruding bony spot in her old sternotomy area and... like I said, it's weird looking. It's just not what you picture when you think of how a 5-year old's chest should look.
When Harlie went back to school after the pacemaker surgery, she lifted up her shirt and showed a friend her "boo boo." When Terri told me that I almost fell over. She has NEVER done that before. And showing people boo boos is a completely normal 5-year old thing to do! She has definitely been WAY more aware of her incision this time - much more so than ever before. I think at first I was interpreting that as pain or discomfort for her - but now I think it's just maturity. And her last major surgery was on her back - and she couldn't see it (thank God!). Oh, I don't want to even think about her next one (jaw).
ENT
So, I finally contacted Harlie's ENT in DC and came clean about her wearing a cap during the day (he didn't know). I also asked about surgically placing a bone anchored hearing aid (BAHA). We will need to meet with the audiologist there to see if Harlie's skull is ready for it. I think it has to be a certain thickness or something before they can do it. I know that doing the BAHA surgery this year would be too much. The Pacemaker, BAHA and jaw reconstruction - all within 9 months or less - is probably too much. But, there's a part of me that says waiting another year to do the BAHA is too long. I've heard that you have to wait three months before you can use the anchor (to let it heal) so, no hearing aid can be worn on that side for that time (which means most get that surgery close to the summer). And I've heard that kids who wore a soft band one and then got a BAHA said that the hearing quality is so much better with the BAHA. To lose a whole year of better hearing - during a foundation-building year - seems unwise.
Sometimes the decisions we have to make really make me mad. It is harder than you would think to balance her overall comfort/happiness with what's best for her in the big picture. Reminds me of this post.
Anyway, that's it for today. I have to vacuum the downstairs - for the millionth time - because Rooney puts anything and everything in his mouth.
Thanks for reading!
~Christy
Thursday, October 13, 2011
Plastic Surgery Appointment
Tuesday proved to be a crazy day. I need to back up slightly first.
Sometime in the last few days Murphy stepped on a lego (a constant hazard around here) and cut the bottom of his foot. Tom washed it and put a bandaid on it, and I forgot all about it. Until Monday night, when Murphy started complaining about it (or Tom saw some drainage on his sock, or something. I know, ewwww, right?) So, we took a look and said, "Hello, Infection!" There was pus (such a yucky word), his foot was swollen and there was a red line creeping up his foot starting at the site. Ugh. Of course, he didn't have school on Monday and I took them to the mall to play - but did he say anything then - like when the doctor's office was open? No.
So we are supposed to leave the house at 9am the next morning, and I have no idea when we'll be back. I didn't think he could go another whole day without antibiotics. So, as soon as the office opened (8:30) Tuesday morning, I called his doc's office and they said to bring him in asap and they would take him and get him back out the door to try to help accommodate our schedule. They are so awesome.
Tom left and went to get Murphy from school while I stayed home to feed Harlie and pack the car. Despite our major efforts, by the time we put gas in the car and dropped the prescription off at the pharmacy, it was 9:30 by the time we were on the road.
More than an hour later (we were in Newport News by then) I switched out a movie for Harlie. And in doing so, I noticed that the floor looked pretty bare. Then I asked, "Where's Harlie's suction machine?"
Holy Crap.
WE LEFT HARLIE'S SUCTION MACHINE AT HOME!!!!
As the magnitude of this error sunk in, Tom started being funny (our go-to plan for very stressful times). And then I laughed and cried at the same time. Oh, so many emotions! We thought about our last thoughts as we were leaving the house. Tom said, "Don't forget your Diet Coke!" Thank God we remembered that! Whew!
And then I remembered plugging it in to charge because somehow we forgot to do that the night before. So, I plugged it in until it was time to go. While I was loading the car I thought about putting it in the car then, but then thought, "no, what if we need it before we get in the car?" I didn't want it to be in the driveway while I was in the house because that was too far.
That freaking suction machine has been at Harlie's side every minute of her life (practically) since the day she first left the hospital.
What if she had a plug? Well, she's certainly had them - but they've not been emergent so far. But I know our luck. The day we don't have the suction machine IS the day we're going to need it. Like really need it. And since it helps keep her airway open - the thought that I don't have it around is not a good one.
We were WAY too far to turn around. And she has a much stronger cough now. And we didn't have a choice. We were just going to have to be without it and hope for the best. I thought if I make it to old age, it'll be a miracle.
So, we get to the hospital and see an ENT first. He said that Harlie's ear is full of fluid, her eardrum is retracted (meaning pressure!) and of course, it's all scarred (nothing new there). Dang it! But, it's not infected. Of course she just had her last dose of antibiotics the night before. So, who knows what will happen now. So, to her - it sounds like she's underwater. Which would explain why we haven't seen an improvement since the blood clot came out a few weeks ago. Which reminds me, I don't think I ever told you about that. Ugh.
Okay - real quick... you might remember in this post I talked about how the pediatrician looked in Harlie's ear and then it started bleeding? It bled off and on for several days. Then a few days later she started pointing to her ear and signing "broken" which she does when the hearing aid battery has died. But, the aid was working fine. So, clearly something was amiss. I called her local ENT and they worked us in. The doc pulled out a HUGE blood clot that was blocking over 80% of her canal. No wonder she couldn't hear! And that's been in there everyday since before school started!
We thought for sure we'd see a turnaround in her listening and participation at school. But, after a few days, it seemed to get even worse! So, the fluid that's in there now would explain that. The ENT that we just saw yesterday said that if it doesn't clear up in two weeks, we should get her another tube. Ugh. It looks like I should really look into a bone anchored hearing aid (BAHA) for her. At least that would give us some back up that wouldn't be affected by fluid or blood, or whatever.
After we saw the ENT, her plastic surgeon came in. We spent more time with him yesterday than we ever have. He looked at her CT scan. I need to figure out how to get a photo of some of the images so I can show you. Her jaw is crazy. Unfortunately, my Mac computer won't read the disc. I'll see if Tom can work on it for me.
Anyway, he talked about what he needed to do. Her ramus is in a horizontal position instead of vertical, like in this picture:
And she's missing the condyle on her right. And I think there's something wrong with the coronoid process, but don't quote me on that.
It's really hard to picture the ramus in a horizontal position. But, her jaw looks nothing like that picture. She has no angle at all, really. But he said he could add one in when she's older. Oh goody, more surgeries! And her bottom teeth are way off from her top teeth. Although you don't need a CT scan to see that! And clearly, the two sides of her jaw are completely different. Her last reconstruction was done in December 2009. The bone graft on the left side took just fine. But the one on the right got infected and had to be removed. This left her jaw even more asymmetrical than before.
Basically, he's going to have to cut up her jaw into several pieces and then put them back together again in a better way. If you've ever had any kind of dental work done at all - I'm sure you can only imagine the pain when recovering from this kind of surgery. It is truly horrifying.
The good news is that he thinks she has more bone to work with this time around. I guess the bone has gotten thicker as she's gotten older. So, hopefully that will help a lot. And he feels confident he can make the changes necessary for this surgery to be successful. But, we've thought that each time and here we are.
The bad news is that plastic surgeons (especially reconstructive for anatomy defects) are like artists. Each patient is completely different. The results vary widely and cannot always be predicted. And since her structure is abnormal to begin with, it makes it almost impossible to know what to expect. All these are my words by the way - not his. It's just my take on it after all these years.
And he said that with Goldenhar Syndrome, not only is the bony structure affected - but so is the soft tissue. And if the soft tissue won't stretch or accommodate the changes made to the bony structure, then the results might not be favorable. The soft tissue can actually force the bone to retract or move by the constant pressure. Which is why it takes a year to know if the surgery was successful. The agony!
He said that he could do the surgery whenever we are comfortable.
After talking it through, we decided that we would shoot for May, 2012. Since her jaw has to be wired shut for 9 weeks, if we waited till after school let out for the summer, we would run a huge risk of her not being able to start school again in the fall. Since she's had 2 out of 3 bone grafts get infected and require additional hospital time, we would rather be safe than sorry. And Tom was thinking that it would be better for her to miss the last month of her first time through kindergarten, than miss her first month of real kindergarten.
So, if we are lucky, and all goes the way we want it to, we would be hoping for decannulation (getting the trach out) sometime in the summer of 2013. So, she would be 7 and starting the first grade (assuming she does kindergarten twice, and is able to progress to first grade).
It's really overwhelming to think she'll be almost 7 and still be trached. I had no idea it would be like this. And what if this surgery isn't successful? I can't even think about it.
Which brings me to my struggle with this whole mess. I was thinking that we should get some other opinions. I just thought that we owe it to Harlie and to ourselves to make sure that we are making the best decision on this. So, I spoke with her ENT in DC about it several months ago. He gave me the name of a surgeon in Jacksonville, Florida. I e-mailed him today. And he replied, and in his reply he "strongly recommended" that I reach out to another surgeon in Miami.
And his recommendation got me thinking that I could probably reach out to a dozen plastic surgeons and that I would still be in the same situation. How will I know who's the right one? So, thinking things through....
1. If I went to a different surgeon, they would be going into her jaw with no prior experience as to what worked or didn't work in the two previous surgeries.
2. I do believe that no matter who performs the surgery - the same issues are present (the question about the soft tissue, bone grafts, results, etc.).
3. I have to have a facility that has a cardiac anesthesiologist and can support her cardiac issues (or at least get her to DC if needed).
4. If we travel far away for surgery (like Miami or Boston) how do we do the follow up appointments? And what if she gets another infection like before? What if time is of the essence???
5. I've already seen two other plastic surgeons (in addition to her current one) and neither of them were candidates to perform surgery, in my opinion. Both of them only perform jaw distraction - not jaw reconstruction. Her current surgeon does both procedures. And it is very clear from her CT scan that jaw distraction is NOT an option for her. Period. Her jaw needs WAY more than just lengthening. It needs full reconstruction. That's just the way it is. And both of those surgeons were trying to tell me that distraction can be done in almost every case. Whatever. I just don't believe that. And to be fair, they had not seen her CT scan when they said that. But, the fact that they would say that without seeing her CT scan is concerning, if you ask me.
6. I am very comfortable with this surgeon. I think he's a great person, as well as a surgeon. But, there is a part of me that says we have ONE more shot to get this right. It HAS to work this time. But are more opinions going to help or confuse? I don't know. But I do know that the thought of something going wrong and having to travel great distances to see her surgeon is VERY SCARY (considering how awful our last experience was, which lead to this).
If this surgery is successful, our lives will change dramatically. Without the trach, Harlie could learn to speak at a much faster pace. Her voice would be stronger. And she would be able to make sound with a lot less effort - which would greatly speed up the process.
Eating could be a lot easier. I have to say that after seeing her CT scan - I have to wonder how much the alignment of her teeth affects her ability/desire to eat by mouth. Her bottom teeth fall to the right and are no where near lining up with her top teeth. So, as I sit here and make my jaw go to the right and then try to swallow, it's damn near impossible! Try it. I don't know how in the world she does it!!! And now I feel like a total horrible mother for making her!
And forget chewing!!! When is she going to be able to learn to chew??? I really don't see how chewing is going to be an option at all - until her teeth line up somewhat. And the thought of going more and more years with no chewing makes me want to barf. Can you imagine the impact of that socially? Not to mention YEARS and YEARS of more pureeing food for her!!! Oh brother. I have to stop thinking about that. For real.
So, I guess you could say I have a lot on my mind. As much as I want this surgery to happen, I dread it. The thought of her waking up afterwards and looking me with that look. The look that says, "What did you let them do to me???" I just have to hope that the next seven months will provide some growth in maturity and focus to allow us to try to talk to her about it so she'll know what's happening. Or at least know more than she usually does before a surgery.
It makes my heart hurt to know what lies ahead of her. Until then, we'll laugh as much as possible.
Oh, and just in case you were wondering, we did just fine without the suction machine. We didn't need to use it once. And what a difference it's absence made to our load when walking around the hospital! And all those times I take it into the grocery store, or Target or wherever? Maybe we can lighten our load a wee bit? I think if it's in the car and we can get to it quickly if needed, it would be fine to not carry it all the time.
Well, that's it. It's super late and this post is super long. As always, thanks for reading!
~Christy
Sometime in the last few days Murphy stepped on a lego (a constant hazard around here) and cut the bottom of his foot. Tom washed it and put a bandaid on it, and I forgot all about it. Until Monday night, when Murphy started complaining about it (or Tom saw some drainage on his sock, or something. I know, ewwww, right?) So, we took a look and said, "Hello, Infection!" There was pus (such a yucky word), his foot was swollen and there was a red line creeping up his foot starting at the site. Ugh. Of course, he didn't have school on Monday and I took them to the mall to play - but did he say anything then - like when the doctor's office was open? No.
So we are supposed to leave the house at 9am the next morning, and I have no idea when we'll be back. I didn't think he could go another whole day without antibiotics. So, as soon as the office opened (8:30) Tuesday morning, I called his doc's office and they said to bring him in asap and they would take him and get him back out the door to try to help accommodate our schedule. They are so awesome.
Tom left and went to get Murphy from school while I stayed home to feed Harlie and pack the car. Despite our major efforts, by the time we put gas in the car and dropped the prescription off at the pharmacy, it was 9:30 by the time we were on the road.
More than an hour later (we were in Newport News by then) I switched out a movie for Harlie. And in doing so, I noticed that the floor looked pretty bare. Then I asked, "Where's Harlie's suction machine?"
Holy Crap.
WE LEFT HARLIE'S SUCTION MACHINE AT HOME!!!!
As the magnitude of this error sunk in, Tom started being funny (our go-to plan for very stressful times). And then I laughed and cried at the same time. Oh, so many emotions! We thought about our last thoughts as we were leaving the house. Tom said, "Don't forget your Diet Coke!" Thank God we remembered that! Whew!
And then I remembered plugging it in to charge because somehow we forgot to do that the night before. So, I plugged it in until it was time to go. While I was loading the car I thought about putting it in the car then, but then thought, "no, what if we need it before we get in the car?" I didn't want it to be in the driveway while I was in the house because that was too far.
That freaking suction machine has been at Harlie's side every minute of her life (practically) since the day she first left the hospital.
What if she had a plug? Well, she's certainly had them - but they've not been emergent so far. But I know our luck. The day we don't have the suction machine IS the day we're going to need it. Like really need it. And since it helps keep her airway open - the thought that I don't have it around is not a good one.
We were WAY too far to turn around. And she has a much stronger cough now. And we didn't have a choice. We were just going to have to be without it and hope for the best. I thought if I make it to old age, it'll be a miracle.
So, we get to the hospital and see an ENT first. He said that Harlie's ear is full of fluid, her eardrum is retracted (meaning pressure!) and of course, it's all scarred (nothing new there). Dang it! But, it's not infected. Of course she just had her last dose of antibiotics the night before. So, who knows what will happen now. So, to her - it sounds like she's underwater. Which would explain why we haven't seen an improvement since the blood clot came out a few weeks ago. Which reminds me, I don't think I ever told you about that. Ugh.
Okay - real quick... you might remember in this post I talked about how the pediatrician looked in Harlie's ear and then it started bleeding? It bled off and on for several days. Then a few days later she started pointing to her ear and signing "broken" which she does when the hearing aid battery has died. But, the aid was working fine. So, clearly something was amiss. I called her local ENT and they worked us in. The doc pulled out a HUGE blood clot that was blocking over 80% of her canal. No wonder she couldn't hear! And that's been in there everyday since before school started!
We thought for sure we'd see a turnaround in her listening and participation at school. But, after a few days, it seemed to get even worse! So, the fluid that's in there now would explain that. The ENT that we just saw yesterday said that if it doesn't clear up in two weeks, we should get her another tube. Ugh. It looks like I should really look into a bone anchored hearing aid (BAHA) for her. At least that would give us some back up that wouldn't be affected by fluid or blood, or whatever.
After we saw the ENT, her plastic surgeon came in. We spent more time with him yesterday than we ever have. He looked at her CT scan. I need to figure out how to get a photo of some of the images so I can show you. Her jaw is crazy. Unfortunately, my Mac computer won't read the disc. I'll see if Tom can work on it for me.
Anyway, he talked about what he needed to do. Her ramus is in a horizontal position instead of vertical, like in this picture:
And she's missing the condyle on her right. And I think there's something wrong with the coronoid process, but don't quote me on that.
It's really hard to picture the ramus in a horizontal position. But, her jaw looks nothing like that picture. She has no angle at all, really. But he said he could add one in when she's older. Oh goody, more surgeries! And her bottom teeth are way off from her top teeth. Although you don't need a CT scan to see that! And clearly, the two sides of her jaw are completely different. Her last reconstruction was done in December 2009. The bone graft on the left side took just fine. But the one on the right got infected and had to be removed. This left her jaw even more asymmetrical than before.
Basically, he's going to have to cut up her jaw into several pieces and then put them back together again in a better way. If you've ever had any kind of dental work done at all - I'm sure you can only imagine the pain when recovering from this kind of surgery. It is truly horrifying.
The good news is that he thinks she has more bone to work with this time around. I guess the bone has gotten thicker as she's gotten older. So, hopefully that will help a lot. And he feels confident he can make the changes necessary for this surgery to be successful. But, we've thought that each time and here we are.
The bad news is that plastic surgeons (especially reconstructive for anatomy defects) are like artists. Each patient is completely different. The results vary widely and cannot always be predicted. And since her structure is abnormal to begin with, it makes it almost impossible to know what to expect. All these are my words by the way - not his. It's just my take on it after all these years.
And he said that with Goldenhar Syndrome, not only is the bony structure affected - but so is the soft tissue. And if the soft tissue won't stretch or accommodate the changes made to the bony structure, then the results might not be favorable. The soft tissue can actually force the bone to retract or move by the constant pressure. Which is why it takes a year to know if the surgery was successful. The agony!
He said that he could do the surgery whenever we are comfortable.
After talking it through, we decided that we would shoot for May, 2012. Since her jaw has to be wired shut for 9 weeks, if we waited till after school let out for the summer, we would run a huge risk of her not being able to start school again in the fall. Since she's had 2 out of 3 bone grafts get infected and require additional hospital time, we would rather be safe than sorry. And Tom was thinking that it would be better for her to miss the last month of her first time through kindergarten, than miss her first month of real kindergarten.
So, if we are lucky, and all goes the way we want it to, we would be hoping for decannulation (getting the trach out) sometime in the summer of 2013. So, she would be 7 and starting the first grade (assuming she does kindergarten twice, and is able to progress to first grade).
It's really overwhelming to think she'll be almost 7 and still be trached. I had no idea it would be like this. And what if this surgery isn't successful? I can't even think about it.
Which brings me to my struggle with this whole mess. I was thinking that we should get some other opinions. I just thought that we owe it to Harlie and to ourselves to make sure that we are making the best decision on this. So, I spoke with her ENT in DC about it several months ago. He gave me the name of a surgeon in Jacksonville, Florida. I e-mailed him today. And he replied, and in his reply he "strongly recommended" that I reach out to another surgeon in Miami.
And his recommendation got me thinking that I could probably reach out to a dozen plastic surgeons and that I would still be in the same situation. How will I know who's the right one? So, thinking things through....
1. If I went to a different surgeon, they would be going into her jaw with no prior experience as to what worked or didn't work in the two previous surgeries.
2. I do believe that no matter who performs the surgery - the same issues are present (the question about the soft tissue, bone grafts, results, etc.).
3. I have to have a facility that has a cardiac anesthesiologist and can support her cardiac issues (or at least get her to DC if needed).
4. If we travel far away for surgery (like Miami or Boston) how do we do the follow up appointments? And what if she gets another infection like before? What if time is of the essence???
5. I've already seen two other plastic surgeons (in addition to her current one) and neither of them were candidates to perform surgery, in my opinion. Both of them only perform jaw distraction - not jaw reconstruction. Her current surgeon does both procedures. And it is very clear from her CT scan that jaw distraction is NOT an option for her. Period. Her jaw needs WAY more than just lengthening. It needs full reconstruction. That's just the way it is. And both of those surgeons were trying to tell me that distraction can be done in almost every case. Whatever. I just don't believe that. And to be fair, they had not seen her CT scan when they said that. But, the fact that they would say that without seeing her CT scan is concerning, if you ask me.
6. I am very comfortable with this surgeon. I think he's a great person, as well as a surgeon. But, there is a part of me that says we have ONE more shot to get this right. It HAS to work this time. But are more opinions going to help or confuse? I don't know. But I do know that the thought of something going wrong and having to travel great distances to see her surgeon is VERY SCARY (considering how awful our last experience was, which lead to this).
If this surgery is successful, our lives will change dramatically. Without the trach, Harlie could learn to speak at a much faster pace. Her voice would be stronger. And she would be able to make sound with a lot less effort - which would greatly speed up the process.
Eating could be a lot easier. I have to say that after seeing her CT scan - I have to wonder how much the alignment of her teeth affects her ability/desire to eat by mouth. Her bottom teeth fall to the right and are no where near lining up with her top teeth. So, as I sit here and make my jaw go to the right and then try to swallow, it's damn near impossible! Try it. I don't know how in the world she does it!!! And now I feel like a total horrible mother for making her!
And forget chewing!!! When is she going to be able to learn to chew??? I really don't see how chewing is going to be an option at all - until her teeth line up somewhat. And the thought of going more and more years with no chewing makes me want to barf. Can you imagine the impact of that socially? Not to mention YEARS and YEARS of more pureeing food for her!!! Oh brother. I have to stop thinking about that. For real.
So, I guess you could say I have a lot on my mind. As much as I want this surgery to happen, I dread it. The thought of her waking up afterwards and looking me with that look. The look that says, "What did you let them do to me???" I just have to hope that the next seven months will provide some growth in maturity and focus to allow us to try to talk to her about it so she'll know what's happening. Or at least know more than she usually does before a surgery.
It makes my heart hurt to know what lies ahead of her. Until then, we'll laugh as much as possible.
Oh, and just in case you were wondering, we did just fine without the suction machine. We didn't need to use it once. And what a difference it's absence made to our load when walking around the hospital! And all those times I take it into the grocery store, or Target or wherever? Maybe we can lighten our load a wee bit? I think if it's in the car and we can get to it quickly if needed, it would be fine to not carry it all the time.
Well, that's it. It's super late and this post is super long. As always, thanks for reading!
~Christy
Tuesday, June 8, 2010
Plastic Surgery follow up
So, today we went to Norfolk to see Harlie's plastic surgeon, Dr. Magee. He said she was very "spry." She was all over that office, checking every little thing out. An ENT also came in to see her and he said she was very "busy."
Anyway, Dr. Magee said that she is going to need another advancement (jaw reconstruction). That was not really news to me. I figured as much. He is going to have to put more bone on the right side to even up her mouth again. Since the infected bone graft was removed from the right side only, her whole jaw shifted to the right. He said he wouldn't even think about doing it any earlier than six months from now. But, I told him that Tom and I would rather take our time getting this next one done. There are other priorities right now. And she's happy and functioning as she is, so we'll just leave it until we're ready for that again.
One thing that might force us to think about it (whether we are ready or not) is her chewing abilities. Not that she's chewing right now. But, certainly that is a skill we would like to start working on at some point. And he said that depends on if she can manipulate her jaw to make her teeth have contact. They do not line up as it is right now. So, we'll just have to see what she can do, when we get there.
The good news is that I had him take a look at her front tooth. He said that it looks like it will be okay. WHEW! You can still see a bit of bruising on the inside of the tooth, but on the outside, it looks totally normal. I will be so grateful if she keeps her tooth!
Well, that's it for tonight. Thanks for reading!
~Christy
Anyway, Dr. Magee said that she is going to need another advancement (jaw reconstruction). That was not really news to me. I figured as much. He is going to have to put more bone on the right side to even up her mouth again. Since the infected bone graft was removed from the right side only, her whole jaw shifted to the right. He said he wouldn't even think about doing it any earlier than six months from now. But, I told him that Tom and I would rather take our time getting this next one done. There are other priorities right now. And she's happy and functioning as she is, so we'll just leave it until we're ready for that again.
One thing that might force us to think about it (whether we are ready or not) is her chewing abilities. Not that she's chewing right now. But, certainly that is a skill we would like to start working on at some point. And he said that depends on if she can manipulate her jaw to make her teeth have contact. They do not line up as it is right now. So, we'll just have to see what she can do, when we get there.
The good news is that I had him take a look at her front tooth. He said that it looks like it will be okay. WHEW! You can still see a bit of bruising on the inside of the tooth, but on the outside, it looks totally normal. I will be so grateful if she keeps her tooth!
Well, that's it for tonight. Thanks for reading!
~Christy
Thursday, December 10, 2009
Post-Op Update
I think the surgery went well. I don’t think there were any problems. Obviously it will be a long while before we will know if it was successful or not.
Her surgeon extended her jaw by two centimeters. It doesn’t sound like much, but it is a lot to her little face and her little jaw. The previous bone graft was there and intact. It just didn’t grow. At this point I’m not exactly sure what that means for this bone graft. The problem is that she is missing some pretty important bones in the back of her jaw.
Another problem is the tightness of her skin. Extending her jaw by two centimeters takes it’s toll on the skin having to suddenly stretch that much. And then the skin works against the bone graft (another reason to wire her mouth shut with her lower jaw over her top).
There are certainly some reasons to worry about the results. But for now, I’m just going with the flow and holding on to hope that this will work and that we won’t have to do it again. There are never any guarantees with cranio-facial surgery. Each child - even with the same syndrome - is different. Not only that, but then each of us grows differently, heals differently, scars differently, etc. Crazy stuff when you really think about it.
Seeing her this time was less shocking than last time. And oddly enough, she looks better immediately post-op than she did last time. But I know that’s only temporary. They told us that her bruising and bleeding could actually be worse this time around. Frankly, that’s hard to imagine.
Here she is immediately post-op.
Unfortunately, tomorrow she will be much worse.
But at least I feel so much better now that the surgery is over. I honestly didn’t realize how stressful the past few days have been. I was more worried about her safety during the surgery than usual. Worrying takes a lot of energy. And I don’t have energy to waste. I’m so relieved that hurdle is behind us so we can move on to recovery.
The last time she had this surgery she was in the PICU for three nights and then discharged home. Three nights a year and a half ago - and the nurses remember her! Crazy! They all seem very competent and so far, we are very pleased with her care.
That's it for now. I will, of course, update you tomorrow.
Thank you so much,
Christy
Her surgeon extended her jaw by two centimeters. It doesn’t sound like much, but it is a lot to her little face and her little jaw. The previous bone graft was there and intact. It just didn’t grow. At this point I’m not exactly sure what that means for this bone graft. The problem is that she is missing some pretty important bones in the back of her jaw.
Another problem is the tightness of her skin. Extending her jaw by two centimeters takes it’s toll on the skin having to suddenly stretch that much. And then the skin works against the bone graft (another reason to wire her mouth shut with her lower jaw over her top).
There are certainly some reasons to worry about the results. But for now, I’m just going with the flow and holding on to hope that this will work and that we won’t have to do it again. There are never any guarantees with cranio-facial surgery. Each child - even with the same syndrome - is different. Not only that, but then each of us grows differently, heals differently, scars differently, etc. Crazy stuff when you really think about it.
Seeing her this time was less shocking than last time. And oddly enough, she looks better immediately post-op than she did last time. But I know that’s only temporary. They told us that her bruising and bleeding could actually be worse this time around. Frankly, that’s hard to imagine.
Here she is immediately post-op.
Unfortunately, tomorrow she will be much worse.
But at least I feel so much better now that the surgery is over. I honestly didn’t realize how stressful the past few days have been. I was more worried about her safety during the surgery than usual. Worrying takes a lot of energy. And I don’t have energy to waste. I’m so relieved that hurdle is behind us so we can move on to recovery.
The last time she had this surgery she was in the PICU for three nights and then discharged home. Three nights a year and a half ago - and the nurses remember her! Crazy! They all seem very competent and so far, we are very pleased with her care.
That's it for now. I will, of course, update you tomorrow.
Thank you so much,
Christy
Saturday, November 7, 2009
We have another surgery date.
Late Friday afternoon, I got a call from Harlie's plastic surgeon's office. She said that Dr. Magee had a cancellation and he could do her jaw reconstruction on, gulp, DECEMBER 9th!!!! We were thinking this surgery would happen sometime around February.
It's just kinda weird to think about it being so soon. Maybe I'm in shock. I need time prepare - mentally. And right before Christmas?! We were supposed to go to Pittsburgh the week before Christmas. Now that won't happen. There's no way she'll be able to travel that soon after surgery.
But, I don't see how we can pass up the opportunity. And I guess it's a good thing that I won't be able to spend the next several months thinking about it.
Yep, that's a really good thing.
Luckily, Tom's mom can come down to help us with the boys. And it's better for Tom's work schedule to do it in December vs. February. So, hopefully that means he can stay with me the whole time she's in the hospital. If I remember correctly, she was in for just about three days last time.
Uh oh. I just realized that she needs to get that G-J Tube before she can have the jaw reconstruction. Hmmmmm. I wonder if I can pull that off. I think they do it radiology? So, maybe that will help? Ugh. That will definitely be the first call I make on Monday.
Anyway, so early this morning my friend, Natalie and I were on our way to meet our running group for our last pre-race run, when we were rear-ended at a red light. We were just sitting there chatting and BAM! There was no warning. No brakes screeching or anything. Which, honestly, I think was to our benefit. We were relaxed when we were hit, which I think is a good thing. His car was pretty crumpled and both his air bags deployed.
Natalie's car appeared to have just minor damage to the bumper. But when we drove away, there was definitely something going on underneath the car. We didn't make it to the run, which I guess wouldn't have been that smart to run right after that anyway.
We are fine, by the way. Just some lower back stiffness, which I really think will be fine in a day or so. Now we just have to hope that nothing like this happens on our way to the race! Missing the race would really be VERY disappointing after all the training we've done!
Well, that's it for now.
Take care,
Christy
It's just kinda weird to think about it being so soon. Maybe I'm in shock. I need time prepare - mentally. And right before Christmas?! We were supposed to go to Pittsburgh the week before Christmas. Now that won't happen. There's no way she'll be able to travel that soon after surgery.
But, I don't see how we can pass up the opportunity. And I guess it's a good thing that I won't be able to spend the next several months thinking about it.
Yep, that's a really good thing.
Luckily, Tom's mom can come down to help us with the boys. And it's better for Tom's work schedule to do it in December vs. February. So, hopefully that means he can stay with me the whole time she's in the hospital. If I remember correctly, she was in for just about three days last time.
Uh oh. I just realized that she needs to get that G-J Tube before she can have the jaw reconstruction. Hmmmmm. I wonder if I can pull that off. I think they do it radiology? So, maybe that will help? Ugh. That will definitely be the first call I make on Monday.
Anyway, so early this morning my friend, Natalie and I were on our way to meet our running group for our last pre-race run, when we were rear-ended at a red light. We were just sitting there chatting and BAM! There was no warning. No brakes screeching or anything. Which, honestly, I think was to our benefit. We were relaxed when we were hit, which I think is a good thing. His car was pretty crumpled and both his air bags deployed.
Natalie's car appeared to have just minor damage to the bumper. But when we drove away, there was definitely something going on underneath the car. We didn't make it to the run, which I guess wouldn't have been that smart to run right after that anyway.
We are fine, by the way. Just some lower back stiffness, which I really think will be fine in a day or so. Now we just have to hope that nothing like this happens on our way to the race! Missing the race would really be VERY disappointing after all the training we've done!
Well, that's it for now.
Take care,
Christy
Thursday, October 15, 2009
Plastic surgery update
So, to continue the saga of the CT scans...
Radiology in DC overnighted the disc to Dr. Magee in Norfolk and he received it on Wednesday. He did look at them and he was able to rule out a concern - that the bone grafts didn't take. I guess there are people that can have a bone issue where the bone grafts are reabsorbed by the body, thus, they don't take. Luckily, that isn't the case with Harlie. Whew!
Her bone graft seemed to take just fine. He's thinking that it just didn't grow at the same rate as the rest of her head. And to be honest, as I was thinking about it today, I think I remember him telling us a long time ago that it is hard to say how she will grow. Since it is abnormal to begin with, it would be hard to assume that it will grow normally from here on out. I don't know what this means as far as her future goes. Since I wasn't having a conversation with him, I certainly couldn't ask him questions. I'll just have to ask him that one later.
So, he said that he thinks another bone graft jaw reconstruction is the way to go. He said that we can pick our surgery date for anytime after the first of the year. I'll call his scheduler tomorrow to see what our options are. And then I guess we'll look at Tom's work schedule so we can try to make it for a week that he's not beginning a kitchen project. The good thing is that it is not a long hospitalization. Although I am certainly not looking forward to that recovery, either.
Her first jaw reconstruction was awful. And we couldn't prepare ourselves for all the emotions and recovery issues. But this time we'll be better on all fronts. For those of you that don't know what I'm talking about... here's a summary of the surgery:
They harvest bone from her skull to insert in her jaw.
They use donor bone to replace what was taken from her skull.
They cut her jaw on both sides, and insert the bone from her skull and connect it with screws and pins.
They wire her jaw shut, with her bottom teeth pulled out and over her top teeth and a wire that runs underneath her skin is connected to a screw in the bone between her eyes.
She will stay wired shut for at least 9 weeks.
Then they remove the wires so she can open her mouth again.
I'm not looking forward to the wound care. There will be a large incision in her head (they will shave her hair only at the incision). And she will have three incisions under her jaw - right above her trach ties. Ugh. Plus, there will be bruising. And swelling. Lots of bruising and lots of swelling. You can see the pictures from her first surgery under Photo Albums on the left.
But, for now, I won't think about that. I just want her to be able to breathe through her nose and mouth so she can learn how to talk and eat. That's all. And this surgery will get us there. Eventually.
On another note...
I've been sick all week. Which stinks because I'm totally off my training for my half marathon. I haven't been able to run all week. But, I am so lucky to have so many wonderful, caring people around me. My neighbor went and picked up Murphy from school yesterday and let him play over there for the rest of the afternoon, so I could stay in bed. And Jennifer (my nurse on Wednesdays) was the one that called my neighbor to tell her that I was sick. Seriously, how great is it that my nurses can call my neighbor?? As far as home health care goes, that has to be rare!
But Tom made me go to the doctor. It was all cold and rainy outside and I had to get out of my nice cozy bed to go to the doctor - for a cold! He wanted to make sure I didn't have the swine flu. I don't. It's just a cold. A bad cold. But, I do believe that I'm getting better. Today was better than yesterday, so that's good. Of course, Tom is a few days behind me, cold-wise. He bounces back faster than anyone I know, so hopefully his won't last too long.
Now I need to get some rest. Thank you for all your comments and private messages! I love having your support - it makes such a difference!
Thanks,
Christy
Radiology in DC overnighted the disc to Dr. Magee in Norfolk and he received it on Wednesday. He did look at them and he was able to rule out a concern - that the bone grafts didn't take. I guess there are people that can have a bone issue where the bone grafts are reabsorbed by the body, thus, they don't take. Luckily, that isn't the case with Harlie. Whew!
Her bone graft seemed to take just fine. He's thinking that it just didn't grow at the same rate as the rest of her head. And to be honest, as I was thinking about it today, I think I remember him telling us a long time ago that it is hard to say how she will grow. Since it is abnormal to begin with, it would be hard to assume that it will grow normally from here on out. I don't know what this means as far as her future goes. Since I wasn't having a conversation with him, I certainly couldn't ask him questions. I'll just have to ask him that one later.
So, he said that he thinks another bone graft jaw reconstruction is the way to go. He said that we can pick our surgery date for anytime after the first of the year. I'll call his scheduler tomorrow to see what our options are. And then I guess we'll look at Tom's work schedule so we can try to make it for a week that he's not beginning a kitchen project. The good thing is that it is not a long hospitalization. Although I am certainly not looking forward to that recovery, either.
Her first jaw reconstruction was awful. And we couldn't prepare ourselves for all the emotions and recovery issues. But this time we'll be better on all fronts. For those of you that don't know what I'm talking about... here's a summary of the surgery:
They harvest bone from her skull to insert in her jaw.
They use donor bone to replace what was taken from her skull.
They cut her jaw on both sides, and insert the bone from her skull and connect it with screws and pins.
They wire her jaw shut, with her bottom teeth pulled out and over her top teeth and a wire that runs underneath her skin is connected to a screw in the bone between her eyes.
She will stay wired shut for at least 9 weeks.
Then they remove the wires so she can open her mouth again.
I'm not looking forward to the wound care. There will be a large incision in her head (they will shave her hair only at the incision). And she will have three incisions under her jaw - right above her trach ties. Ugh. Plus, there will be bruising. And swelling. Lots of bruising and lots of swelling. You can see the pictures from her first surgery under Photo Albums on the left.
But, for now, I won't think about that. I just want her to be able to breathe through her nose and mouth so she can learn how to talk and eat. That's all. And this surgery will get us there. Eventually.
On another note...
I've been sick all week. Which stinks because I'm totally off my training for my half marathon. I haven't been able to run all week. But, I am so lucky to have so many wonderful, caring people around me. My neighbor went and picked up Murphy from school yesterday and let him play over there for the rest of the afternoon, so I could stay in bed. And Jennifer (my nurse on Wednesdays) was the one that called my neighbor to tell her that I was sick. Seriously, how great is it that my nurses can call my neighbor?? As far as home health care goes, that has to be rare!
But Tom made me go to the doctor. It was all cold and rainy outside and I had to get out of my nice cozy bed to go to the doctor - for a cold! He wanted to make sure I didn't have the swine flu. I don't. It's just a cold. A bad cold. But, I do believe that I'm getting better. Today was better than yesterday, so that's good. Of course, Tom is a few days behind me, cold-wise. He bounces back faster than anyone I know, so hopefully his won't last too long.
Now I need to get some rest. Thank you for all your comments and private messages! I love having your support - it makes such a difference!
Thanks,
Christy
Saturday, August 1, 2009
Upper GI
So, Harlie's Upper GI went well I suppose. She was scared but still cooperative.
They put some barium solution into her feeding tube while she stayed under the x-ray machine. There is a monitor that the doctor watches to know when to take the x-rays. Since Harlie was being so good and cooperative, I was able to stand on the side of the monitor more than I have in the past. Usually I have to stand behind the monitor so she can see me. Anyway, the doctor was great at pointing out what was what and what was going on. She's also the same doc we had in January for her last upper GI.
She stayed perfectly still for the baseline x-rays, before we actually started the Upper GI.
Anyway, for the first time ever (on a study, I mean), we actually got proof that she is refluxing. I mean, we already know that by the fact that she vomits, duh. But, every single time she's had some sort of study, she never refluxed during the study.
Her nissen is still intact, and the doctor said it looked pretty tight. But, some barium still made it's way past it and into her esophagus (but she didn't vomit). I think she got some good pictures of it for her surgeon to see.
Here's the issue: does it warrant having another surgery to make the wrap tighter? If it were up to me - and she didn't need to have another jaw reconstruction - I would say no. I can easily live with the amount of vomiting she does right now. A few times per day sure beats the 40 times a day she used to vomit. So, I'm happy.
Tightening it has some drawbacks (if it's even an option). If you make the wrap too tight, swallowing becomes difficult, if not impossible. And with all the progress she's made lately on that front, we don't want that to happen!
But, it's going to be up to her plastic surgeon. If she has the same surgery she had before, then her jaw will be wired shut for nine weeks and it will be safety issue (aspiration). The surgeon that did her last surgery would not even consider surgery unless she had a nissen. We meet with a new surgeon September 14th for a second opinion. And then after that, we'll have to make some decisions. As usual, fixing one problem, causes problems in another area.
I suppose it's possible to do the wrap tighter (surgery), have jaw reconstruction, wait nine weeks, remove the wires, then undo the tightness of the wrap (surgery). Because while her jaw is wired shut, she can't eat by mouth anyway, so swallowing won't necessarily be that big of a deal (other than her own secretions). But that sounds like a lot to put her through. But, she needs this jaw surgery to move forward. We can't put that off much longer. So, I don't know what we're going to do. I guess we'll just have to wait and see what the doctors say. I'm sure she'll go back on Prevacid. In fact, I went on ahead and did that today.
For the most part, I feel like I'm pretty patient with Harlie's stuff. But, the thought of waiting six more weeks to start the ball rolling on any front regarding her jaw is killing me. If we meet with this new guy and like him and his treatment plan for Harlie's situation - who knows how long it is to get on his surgery schedule. If we decide to stick with her original surgeon, then we'll still have to fix her vomiting - before he'll do it and then who knows when we'll get on his surgery schedule. The same might apply no matter who we go with. And we have to hurry up so she can get her spinal surgery. I have a feeling her jaw might just have to wait. Which also kills me. Ahhhhhhhh!!!!!
They put some barium solution into her feeding tube while she stayed under the x-ray machine. There is a monitor that the doctor watches to know when to take the x-rays. Since Harlie was being so good and cooperative, I was able to stand on the side of the monitor more than I have in the past. Usually I have to stand behind the monitor so she can see me. Anyway, the doctor was great at pointing out what was what and what was going on. She's also the same doc we had in January for her last upper GI.
She stayed perfectly still for the baseline x-rays, before we actually started the Upper GI.
Anyway, for the first time ever (on a study, I mean), we actually got proof that she is refluxing. I mean, we already know that by the fact that she vomits, duh. But, every single time she's had some sort of study, she never refluxed during the study.
Her nissen is still intact, and the doctor said it looked pretty tight. But, some barium still made it's way past it and into her esophagus (but she didn't vomit). I think she got some good pictures of it for her surgeon to see.
Here's the issue: does it warrant having another surgery to make the wrap tighter? If it were up to me - and she didn't need to have another jaw reconstruction - I would say no. I can easily live with the amount of vomiting she does right now. A few times per day sure beats the 40 times a day she used to vomit. So, I'm happy.
Tightening it has some drawbacks (if it's even an option). If you make the wrap too tight, swallowing becomes difficult, if not impossible. And with all the progress she's made lately on that front, we don't want that to happen!
But, it's going to be up to her plastic surgeon. If she has the same surgery she had before, then her jaw will be wired shut for nine weeks and it will be safety issue (aspiration). The surgeon that did her last surgery would not even consider surgery unless she had a nissen. We meet with a new surgeon September 14th for a second opinion. And then after that, we'll have to make some decisions. As usual, fixing one problem, causes problems in another area.
I suppose it's possible to do the wrap tighter (surgery), have jaw reconstruction, wait nine weeks, remove the wires, then undo the tightness of the wrap (surgery). Because while her jaw is wired shut, she can't eat by mouth anyway, so swallowing won't necessarily be that big of a deal (other than her own secretions). But that sounds like a lot to put her through. But, she needs this jaw surgery to move forward. We can't put that off much longer. So, I don't know what we're going to do. I guess we'll just have to wait and see what the doctors say. I'm sure she'll go back on Prevacid. In fact, I went on ahead and did that today.
For the most part, I feel like I'm pretty patient with Harlie's stuff. But, the thought of waiting six more weeks to start the ball rolling on any front regarding her jaw is killing me. If we meet with this new guy and like him and his treatment plan for Harlie's situation - who knows how long it is to get on his surgery schedule. If we decide to stick with her original surgeon, then we'll still have to fix her vomiting - before he'll do it and then who knows when we'll get on his surgery schedule. The same might apply no matter who we go with. And we have to hurry up so she can get her spinal surgery. I have a feeling her jaw might just have to wait. Which also kills me. Ahhhhhhhh!!!!!
Friday, June 26, 2009
No rest for the medically challenged!
First of all - sorry it has taken me so long to update the blog. I can't tell you how much I appreciate the calls and e-mails I've gotten checking on us. I have sat down to update you numerous times this week, but each time I have to stop and go do something else. It's been an unusually busy week - and not Harlie's fault this time! More about that later.
As far as Harlie is doing - she is doing well, I think. She isn't very active (and I'm not pushing her to be, either). She spends most of the time on the couch watching movies. While sitting and relaxing, her respirations are 75-80 per minute and her sats are in the 60s (sometimes low 70s, but not often) on 1 to 2 liters of oxygen. We realized within a few days that it doesn't matter how much oxygen we give her, her sats stay the same.
Before we left the hospital, her cardiologist said we didn't know where she'll finally settle out. Another thing she said was that this was an "enormous" surgery on her body. So, I need to understand that it will take some time for her heart - and her body - to recover. Knowing that helps my patience with getting her off oxygen. It's a pain to drag around. Oh - speaking of oxygen, I took Harlie to speech therapy on Tuesday (I'm a mean mom, I didn't give her much time off) and when we walked in the building a little boy looked at the oxygen tank and asked "Why do you have a vacuum cleaner"? I said, "I wish it was a vacuum cleaner"!
She's still pretty sensitive about her chest. They removed her external pacemaker wires on Friday. They were sutured in there pretty good. She was not a happy camper. They put those little round bandaids on the spots and when I went to remove them Sunday night, she was MAD! And washing her chest is a little challenging. But, all in all, I think she's getting over some of the trauma of the last two weeks. When she sees me coming to her with water or food, she willingly lifts her shirt and opens her mickey button for me. That's definitely an improvement and it's nice to see her more cooperative side again. And on Saturday night (the day we came home), when I put her in bed I told her (and signed) I loved her and she signed "I love you" back. Ahhh... things are right (in our sense of the word) again.
On Monday night, Tom wanted to go for a walk. He was thinking that it was too hot outside for Harlie and that she just wouldn't be up for it anyway. So, he said aloud to Cooper, "Want to go for a walk with Daddy"? And Harlie jumped off the couch and grabbed her shoes and signed "let's go." Well, that answered that. So, we loaded up the strollers (Harlie's with the oxygen tank and suction machine) and headed out. She loved it. And she's so funny about accessories. She wears them all - hair bows, headbands, sunglasses and hats. Sometimes all at the same time! But, she is very sensitive to sunlight, so I suppose she recognizes the benefits.
Well, back to why this week was so busy...
Murphy attended a week's long sports sampler camp at the YMCA across the street. Today was the last day, and I think Murphy is very happy that he doesn't have to go back. He was in the camp with our neighbor (Phillip) across the street, who is the same age. I took the boys in the morning, and Phillip's mom picked them up in the afternoon. On Thursday morning, through conversation, Phillip told me that Murphy just laid around the previous day during camp. WHAT?!?!? So, I asked the counselor if that was true and he asked me "Did Phillip tell on him"? Then he told me that yes, it was true and that they can't make the kids participate, although they try very hard. I later asked Murphy what he didn't like about sports. He told me that it was too much work. Geez. Today they gave the kids a t-shirt that says "All day I dream about sports". Yeah, right. Not this kid. Well, next year we are going to get him involved in something. I don't know how we're going to manage it, but we'll have to figure it out.
He also went to vacation bible school every night (Sunday through Thursday) of this week. My friend Jennifer took him with her kids to her church's VBS. He really enjoyed it. Each day he couldn't wait to go. And then last night (Thursday) they had a show where they sang songs and danced. It was really cute. The songs were great and very catchy. During the week the leaders asked the kids who they wanted to pray for and they wrote their answers on a board. During the show, they read the prayers aloud. Murphy's was about Harlie. He said that he wanted God to help Harlie since she came home from the hospital from heart surgery. I'm usually really good about not crying about life. For the most part, I'm happy and feel very blessed that Harlie has overcome so much. So, I try not to be sad too much. It's just not healthy for me. But to hear her say it aloud and say that Harlie is Murphy's little sister, well it just made me so sad - for so many different reasons - that I couldn't help but cry. Sometimes I just have to forge ahead and not think about things. So, to have to think about it from Murphy's perspective was a little overwhelming. It must be so hard for him to see what's going on, but not fully understand it.
I've tried to have conversations with him about it - to let him know that he can talk to us about it if he wants. But we don't really get anywhere. For example, one night during the first week of Harlie's hospital stay (Tom was still in DC with me) Richmond had a thunderstorm. Tom's mom called us and let Murphy talk to us because he was scared and he was crying saying he missed us. Well, when I asked him this week if he was scared when Harlie was in the hospital he said, "Yes Mommy, I was scared because it was thundering and I missed you and Daddy". Hmmm, not what I meant, but okay. So then I asked him if he knew that Harlie had surgery on her heart and he said no. Ugh. We've talked to him about it before - numerous times. And I know that he knows more than he's letting on because he's talked to other grown ups about it. I'm just not good at talking about her stuff in terms that he can understand. I guess we'll have to get some education on that, or at least get him in front of someone who knows how. There are so many reasons why having a medically fragile child is hard. But I'll have to save that for another post...
Anyway, I've spent the better part of this week (and I'm not fiinished yet) making Harlie's next round of doctor's appointments and getting her therapies back on schedule. So many appointments for one little girl. Ugh.
What's on the horizon? Well, there are some surgical and cardiology follow up appointments. And I'm working on getting her MRI and CT scan scheduled for her upcoming spinal fusion surgery (this winter). And we have to make some decisions on her next jaw reconstruction (ugh). We've decided that we are going to get a second opinion by a surgeon at Children's in DC. We just think that with her heart complications and drug tolerances, she really needs to have surgery in DC. After what we learned and experienced with this last surgery, we are afraid that it might be too risky to go to a hospital that isn't equipped with a cardiac team. And unfortunately, Children's Hospital of the King's Daughters in Norfolk, doesn't have a cardiac department. So, we will see the plastic surgeon from DC in September to see how we feel about him. I just hope that we like what he has to say about her jaw. Because if not, then we will be in one heck of a hard place.
On Monday, we have Harlie's surgical follow-up appointment in DC. I am anxious to see what they think about how she's doing. And then the week after that we have another cardiology appointment with her cardiologist here in town. I love him and I can't wait to catch up with him and get his perspective on things.
Well, this post has been long enough and I really can't devote any more time to sitting here on the computer! I'm neglecting my kids and Brandy is working her fingers to the bone! Literally. She hurt her finger today. I told her to shake it off and to get back to work. No. I didn't really. I was sympathetic. And I let her have our last bandaid. She's fine now.
Thanks again for all your support. We are very grateful!
~Christy
As far as Harlie is doing - she is doing well, I think. She isn't very active (and I'm not pushing her to be, either). She spends most of the time on the couch watching movies. While sitting and relaxing, her respirations are 75-80 per minute and her sats are in the 60s (sometimes low 70s, but not often) on 1 to 2 liters of oxygen. We realized within a few days that it doesn't matter how much oxygen we give her, her sats stay the same.
Before we left the hospital, her cardiologist said we didn't know where she'll finally settle out. Another thing she said was that this was an "enormous" surgery on her body. So, I need to understand that it will take some time for her heart - and her body - to recover. Knowing that helps my patience with getting her off oxygen. It's a pain to drag around. Oh - speaking of oxygen, I took Harlie to speech therapy on Tuesday (I'm a mean mom, I didn't give her much time off) and when we walked in the building a little boy looked at the oxygen tank and asked "Why do you have a vacuum cleaner"? I said, "I wish it was a vacuum cleaner"!
She's still pretty sensitive about her chest. They removed her external pacemaker wires on Friday. They were sutured in there pretty good. She was not a happy camper. They put those little round bandaids on the spots and when I went to remove them Sunday night, she was MAD! And washing her chest is a little challenging. But, all in all, I think she's getting over some of the trauma of the last two weeks. When she sees me coming to her with water or food, she willingly lifts her shirt and opens her mickey button for me. That's definitely an improvement and it's nice to see her more cooperative side again. And on Saturday night (the day we came home), when I put her in bed I told her (and signed) I loved her and she signed "I love you" back. Ahhh... things are right (in our sense of the word) again.
On Monday night, Tom wanted to go for a walk. He was thinking that it was too hot outside for Harlie and that she just wouldn't be up for it anyway. So, he said aloud to Cooper, "Want to go for a walk with Daddy"? And Harlie jumped off the couch and grabbed her shoes and signed "let's go." Well, that answered that. So, we loaded up the strollers (Harlie's with the oxygen tank and suction machine) and headed out. She loved it. And she's so funny about accessories. She wears them all - hair bows, headbands, sunglasses and hats. Sometimes all at the same time! But, she is very sensitive to sunlight, so I suppose she recognizes the benefits.
Well, back to why this week was so busy...
Murphy attended a week's long sports sampler camp at the YMCA across the street. Today was the last day, and I think Murphy is very happy that he doesn't have to go back. He was in the camp with our neighbor (Phillip) across the street, who is the same age. I took the boys in the morning, and Phillip's mom picked them up in the afternoon. On Thursday morning, through conversation, Phillip told me that Murphy just laid around the previous day during camp. WHAT?!?!? So, I asked the counselor if that was true and he asked me "Did Phillip tell on him"? Then he told me that yes, it was true and that they can't make the kids participate, although they try very hard. I later asked Murphy what he didn't like about sports. He told me that it was too much work. Geez. Today they gave the kids a t-shirt that says "All day I dream about sports". Yeah, right. Not this kid. Well, next year we are going to get him involved in something. I don't know how we're going to manage it, but we'll have to figure it out.
He also went to vacation bible school every night (Sunday through Thursday) of this week. My friend Jennifer took him with her kids to her church's VBS. He really enjoyed it. Each day he couldn't wait to go. And then last night (Thursday) they had a show where they sang songs and danced. It was really cute. The songs were great and very catchy. During the week the leaders asked the kids who they wanted to pray for and they wrote their answers on a board. During the show, they read the prayers aloud. Murphy's was about Harlie. He said that he wanted God to help Harlie since she came home from the hospital from heart surgery. I'm usually really good about not crying about life. For the most part, I'm happy and feel very blessed that Harlie has overcome so much. So, I try not to be sad too much. It's just not healthy for me. But to hear her say it aloud and say that Harlie is Murphy's little sister, well it just made me so sad - for so many different reasons - that I couldn't help but cry. Sometimes I just have to forge ahead and not think about things. So, to have to think about it from Murphy's perspective was a little overwhelming. It must be so hard for him to see what's going on, but not fully understand it.
I've tried to have conversations with him about it - to let him know that he can talk to us about it if he wants. But we don't really get anywhere. For example, one night during the first week of Harlie's hospital stay (Tom was still in DC with me) Richmond had a thunderstorm. Tom's mom called us and let Murphy talk to us because he was scared and he was crying saying he missed us. Well, when I asked him this week if he was scared when Harlie was in the hospital he said, "Yes Mommy, I was scared because it was thundering and I missed you and Daddy". Hmmm, not what I meant, but okay. So then I asked him if he knew that Harlie had surgery on her heart and he said no. Ugh. We've talked to him about it before - numerous times. And I know that he knows more than he's letting on because he's talked to other grown ups about it. I'm just not good at talking about her stuff in terms that he can understand. I guess we'll have to get some education on that, or at least get him in front of someone who knows how. There are so many reasons why having a medically fragile child is hard. But I'll have to save that for another post...
Anyway, I've spent the better part of this week (and I'm not fiinished yet) making Harlie's next round of doctor's appointments and getting her therapies back on schedule. So many appointments for one little girl. Ugh.
What's on the horizon? Well, there are some surgical and cardiology follow up appointments. And I'm working on getting her MRI and CT scan scheduled for her upcoming spinal fusion surgery (this winter). And we have to make some decisions on her next jaw reconstruction (ugh). We've decided that we are going to get a second opinion by a surgeon at Children's in DC. We just think that with her heart complications and drug tolerances, she really needs to have surgery in DC. After what we learned and experienced with this last surgery, we are afraid that it might be too risky to go to a hospital that isn't equipped with a cardiac team. And unfortunately, Children's Hospital of the King's Daughters in Norfolk, doesn't have a cardiac department. So, we will see the plastic surgeon from DC in September to see how we feel about him. I just hope that we like what he has to say about her jaw. Because if not, then we will be in one heck of a hard place.
On Monday, we have Harlie's surgical follow-up appointment in DC. I am anxious to see what they think about how she's doing. And then the week after that we have another cardiology appointment with her cardiologist here in town. I love him and I can't wait to catch up with him and get his perspective on things.
Well, this post has been long enough and I really can't devote any more time to sitting here on the computer! I'm neglecting my kids and Brandy is working her fingers to the bone! Literally. She hurt her finger today. I told her to shake it off and to get back to work. No. I didn't really. I was sympathetic. And I let her have our last bandaid. She's fine now.
Thanks again for all your support. We are very grateful!
~Christy
Thursday, January 15, 2009
Disappointing
On Tuesday we went to DC to get Harlie a new ear tube. I guess since she's getting older, she's getting put later on the OR schedule, so we didn't need to be there until 8am. So we left our house at 5:30 - not too bad.
As far as her ear goes, everything is fine - no big deal. Her ENT put a tube in and she's good to go.
BUT, during the waiting for them to take her back to the OR, I got some time with her ENT and gave him a brief summary of her upcoming heart surgery and went over what I would like to happen (heart surgery in the spring, decann sometime thereafter). He asked me a bunch of questions about her PMV (speaking valve) use and I told him what our struggles are. He watched her play a bit and then left. When he came back he told me he wanted to do another bronchoscopy, just in case a granuloma or something was blocking airflow causing our struggles with the PMV and so he would have up-to-date information so he could talk to Harlie's cardiologist about the timing of everything. So I said sure, go ahead.
Without going into a ton of detail, it appears that her bone graft jaw reconstruction was unsuccessful. While she looks better, the real goal of the surgery was to "fix" her upper airway obstruction (her tongue base) so she wouldn't need the trach to breathe or a tube to eat. We were told that her jaw could recede, but our last check up with the plastic surgeon went so great. And her surgeon had a 100% success rate (well, before Harlie, I mean). So I just really believed that it would be a success. To think otherwise was too painful and unnecessary!
So, to say that we're disappointed is an understatement. When her ENT showed me the pictures from the scope - there's no denying it. I was shocked. He said that she needs either time for her jaw to grow, or more surgical intervention. Both requiring more time than I really want to think about. At the rate she grows, who knows when it would grow out. And she had that surgery in JUNE, with possible decanning a year later! So, clearly she will have the trach for much longer than anticipated. Which really isn't shocking in the world of trachs. That's why us trach moms don't daydream too much about life without the trach. And even though I said I knew it was no guarantee - being honest, I didn't really think that applied to us. I guess I won't make that mistake again, huh?
This also explains why she didn't want to wear her PMV as much as we wanted her to. The problem is that she can inhale just fine, but she can't fully exhale. So her ENT drilled a small hole in a PMV and gave it to me to try. We've been trying the new one and while she still takes it off (and hides it) she definitely tolerates it better and has already worn it for a much longer period of time.
So the next day I called her plastic surgeon's office and made an appointment for February. Now we need to figure out what can be done, if anything, and if so, when we can do it. And now my happy little dream of what this new year was going to bring us is...well, not going to come true. To think just 11 days ago I thought she would only have 1 surgery this year. Now we're looking at heart, spine and possibly craniofacial (which there's NO way she can have all of them done in one year).
While this might seem like a depressing post - I want to end on a positive note (it's what gets me through this crazy journey). While I dreamt of a naked neck and a nose breather, she can communicate. And her trach care has gotten "easier" in the sense that I feel more seasoned and comfortable with all her care. And I have great nurses that I love and that love Harlie. And hopefully, with the use of the PMV and future communication devices, she won't be held back developmentally because of the trach. So, this isn't the end of the world. Instead of dreaming of a naked neck, I'll dream of a major growth spurt that kicks her tongue base out of her airway! Which, actually, now that I think about it, is kinda the same thing. Oh well. Whatever works.
Take care,
Christy
As far as her ear goes, everything is fine - no big deal. Her ENT put a tube in and she's good to go.
BUT, during the waiting for them to take her back to the OR, I got some time with her ENT and gave him a brief summary of her upcoming heart surgery and went over what I would like to happen (heart surgery in the spring, decann sometime thereafter). He asked me a bunch of questions about her PMV (speaking valve) use and I told him what our struggles are. He watched her play a bit and then left. When he came back he told me he wanted to do another bronchoscopy, just in case a granuloma or something was blocking airflow causing our struggles with the PMV and so he would have up-to-date information so he could talk to Harlie's cardiologist about the timing of everything. So I said sure, go ahead.
Without going into a ton of detail, it appears that her bone graft jaw reconstruction was unsuccessful. While she looks better, the real goal of the surgery was to "fix" her upper airway obstruction (her tongue base) so she wouldn't need the trach to breathe or a tube to eat. We were told that her jaw could recede, but our last check up with the plastic surgeon went so great. And her surgeon had a 100% success rate (well, before Harlie, I mean). So I just really believed that it would be a success. To think otherwise was too painful and unnecessary!
So, to say that we're disappointed is an understatement. When her ENT showed me the pictures from the scope - there's no denying it. I was shocked. He said that she needs either time for her jaw to grow, or more surgical intervention. Both requiring more time than I really want to think about. At the rate she grows, who knows when it would grow out. And she had that surgery in JUNE, with possible decanning a year later! So, clearly she will have the trach for much longer than anticipated. Which really isn't shocking in the world of trachs. That's why us trach moms don't daydream too much about life without the trach. And even though I said I knew it was no guarantee - being honest, I didn't really think that applied to us. I guess I won't make that mistake again, huh?
This also explains why she didn't want to wear her PMV as much as we wanted her to. The problem is that she can inhale just fine, but she can't fully exhale. So her ENT drilled a small hole in a PMV and gave it to me to try. We've been trying the new one and while she still takes it off (and hides it) she definitely tolerates it better and has already worn it for a much longer period of time.
So the next day I called her plastic surgeon's office and made an appointment for February. Now we need to figure out what can be done, if anything, and if so, when we can do it. And now my happy little dream of what this new year was going to bring us is...well, not going to come true. To think just 11 days ago I thought she would only have 1 surgery this year. Now we're looking at heart, spine and possibly craniofacial (which there's NO way she can have all of them done in one year).
While this might seem like a depressing post - I want to end on a positive note (it's what gets me through this crazy journey). While I dreamt of a naked neck and a nose breather, she can communicate. And her trach care has gotten "easier" in the sense that I feel more seasoned and comfortable with all her care. And I have great nurses that I love and that love Harlie. And hopefully, with the use of the PMV and future communication devices, she won't be held back developmentally because of the trach. So, this isn't the end of the world. Instead of dreaming of a naked neck, I'll dream of a major growth spurt that kicks her tongue base out of her airway! Which, actually, now that I think about it, is kinda the same thing. Oh well. Whatever works.
Take care,
Christy
Saturday, June 7, 2008
Post-Op Day 3
9pm FRIDAY
We are home! Everything went well with the discharge. I got a little bit of a scare because the last vitals the nurse took showed that Harlie had a fever. Which, in my understanding, is completely normal after this type of surgery - (when they have messed with your brain). The neurosurgeon was the last to sign off on her discharge (after Tom happened to pass him in the hallway and grab him). He asked, “any fevers”? I was like, uh oh. But he was fine with hers and said that as long as it doesn’t get too high, it was fine. And she could have one off and on for the next week, so don’t be surprised. We just have to look out for signs of infection around her incisions.
Overall she looks better, I think. I know from here on out she will continue to look better as the swelling goes down and the bruises start to change into all kinds of lovely colors. But, it is still hard on Tom and I. Dr. Magee came by to see her this morning and he said that it is probably hurting me a lot more than it is hurting her at this point. Which is probably true. Well, I hope it’s true anyway. She just looks like she is hurting so much and no parent wants their child to hurt – period.
And I miss her smile. And I miss her sweet little face. I look at old pictures of her and it is just weird (and sad) to know that I won’t see that little face again. I know she will still be her, and that her personality will shine through (it already has a little bit) but nothing will change the strangeness of it all. From what I’ve learned about reconstructive plastic surgery to the face – my feelings are completely normal. I don’t need a pep talk and I know all the positives (they are what get me through the tough times, after all), but I feel the way I feel and nothing but time will help that. So often I find myself wishing time away…
Well, I’ve cleaned her incisions twice now. Not fun. And unlike when the nurse did it yesterday, it seemed to bother her. Which made it not fun even more. Hopefully we will both get used to it and each day hopefully it will bother us less. I only have to do it for one more week.
So, as I was trying to get her ready for bed (not the normal smooth process tonight) Murphy somehow grabbed the cup of half peroxide, half water solution that I made for her incisions and..…you guessed it….. drank it. Ugh. What is up with my kid??? He was not happy about that at all. Now keep in mind that I know nothing about peroxide – despite all my Harlie training – I am NOT a nurse – so I looked at the label and it says to call poison control if swallowed. Luckily, I only used a very small amount of peroxide, so I know it wasn’t much. Tom called poison control and she said that he will be fine and worst case is he’ll throw up. He probably just burned his tongue and throat a bit (and gave us mild heart attacks). That was over an hour ago, and he’s fine now. Just another perfectly normal boring night in the Holton household. You can admit it – you want our life, don’t you? I know. I get that all the time. (Hey, even when I’m tired and irritable I still have a sense of humor.)
Well, that’s all I can do tonight. Each night from here on out I am going to look forward to seeing more and more of my sweet little girl’s new face.
Thank you for all your kind words of support. I appreciate each and every one more than you know.
Take care,
Christy
We are home! Everything went well with the discharge. I got a little bit of a scare because the last vitals the nurse took showed that Harlie had a fever. Which, in my understanding, is completely normal after this type of surgery - (when they have messed with your brain). The neurosurgeon was the last to sign off on her discharge (after Tom happened to pass him in the hallway and grab him). He asked, “any fevers”? I was like, uh oh. But he was fine with hers and said that as long as it doesn’t get too high, it was fine. And she could have one off and on for the next week, so don’t be surprised. We just have to look out for signs of infection around her incisions.
Overall she looks better, I think. I know from here on out she will continue to look better as the swelling goes down and the bruises start to change into all kinds of lovely colors. But, it is still hard on Tom and I. Dr. Magee came by to see her this morning and he said that it is probably hurting me a lot more than it is hurting her at this point. Which is probably true. Well, I hope it’s true anyway. She just looks like she is hurting so much and no parent wants their child to hurt – period.
And I miss her smile. And I miss her sweet little face. I look at old pictures of her and it is just weird (and sad) to know that I won’t see that little face again. I know she will still be her, and that her personality will shine through (it already has a little bit) but nothing will change the strangeness of it all. From what I’ve learned about reconstructive plastic surgery to the face – my feelings are completely normal. I don’t need a pep talk and I know all the positives (they are what get me through the tough times, after all), but I feel the way I feel and nothing but time will help that. So often I find myself wishing time away…
Well, I’ve cleaned her incisions twice now. Not fun. And unlike when the nurse did it yesterday, it seemed to bother her. Which made it not fun even more. Hopefully we will both get used to it and each day hopefully it will bother us less. I only have to do it for one more week.
So, as I was trying to get her ready for bed (not the normal smooth process tonight) Murphy somehow grabbed the cup of half peroxide, half water solution that I made for her incisions and..…you guessed it….. drank it. Ugh. What is up with my kid??? He was not happy about that at all. Now keep in mind that I know nothing about peroxide – despite all my Harlie training – I am NOT a nurse – so I looked at the label and it says to call poison control if swallowed. Luckily, I only used a very small amount of peroxide, so I know it wasn’t much. Tom called poison control and she said that he will be fine and worst case is he’ll throw up. He probably just burned his tongue and throat a bit (and gave us mild heart attacks). That was over an hour ago, and he’s fine now. Just another perfectly normal boring night in the Holton household. You can admit it – you want our life, don’t you? I know. I get that all the time. (Hey, even when I’m tired and irritable I still have a sense of humor.)
Well, that’s all I can do tonight. Each night from here on out I am going to look forward to seeing more and more of my sweet little girl’s new face.
Thank you for all your kind words of support. I appreciate each and every one more than you know.
Take care,
Christy
Friday, June 6, 2008
Post-Op Day 2
10pm - Thursday
For the most part, today was okay. I forgot to mention that Tom had to leave last night (Wednesday night) to go home so he could work today (Thursday). I know he has to work, just part of the deal with a 100% commission job. But I loved having him with me for two solid days during this hospital stay. It’s hard to explain, but it just makes things easier to handle when he’s with me. Plus, he had to take the car.
So, this morning (Thursday), Melissa took me to the hospital and luckily, some friends of Melissa’s helped her out with her daughter so Melissa could sit with me at the hospital for a little bit. When we got there, Harlie’s eye was worse. It was turning black. Still hard to look at. It takes me a few minutes to get myself together and get used to how she looks. It’s still pretty shocking at first. Melissa is great with it because she is a post-surgical nurse – and she knows that kind of stuff. Harlie kept on rubbing her bad eye. It hurt my stomach to watch her dig at it. For a little while this morning, I just didn’t know how I was going to take care of her when we brought her home. I have to take care of all her incisions three times a day. Ugh. I don’t like even looking at them, much less messing with them. And three times a day?!?! For weeks!!! God give me strength!
But I got to hold her. She sat up in the bed and, oh boy, she looked rough. But holding her helped me (and her) a lot. They said that sitting up would help with the swelling. Her head is still bleeding a little, but hopefully that will stop by the time we bring her home. Anyway, I held her for most of the morning and then when I got back from lunch, my mom was holding her. I would say that she was able to be held for most of the day, which is great.
One thing I wasn’t prepared for was the smell of dried blood. Not pleasant. And it’s coming from her mouth. Her nurse today was awesome and called the surgeon to ask what she could do about it. She used some sponges on a stick and wet it and then cleaned what she could get to. Then suctioned out the water. Wow what a difference that made. Her lip is still very swollen, but at least it was finally “clean”.
My mom and sister came down for the day. When they got there, Melissa and I left for lunch. Then she dropped me off back at the hospital and for the rest of the day, we just switched off (because they only allow two visitors at the bedside).
Later on, her nurse showed me how to clean her incisions. All of them look a lot better now that she was able to get off all the dried blood. So, I don’t feel as afraid as I was about cleaning them. I’ll be fine. And it didn’t seem to bother Harlie at all, so that will make it easier for me, too. Luckily, during one of our switches when I was out of the PICU her nurse and the respiratory therapist changed her trach ties - they had not been changed since Monday night (and they get changed at least once a day normally - Ewwww!!!!). I was not looking forward to doing that, I can tell you. The trach ties are WAY too close to her incisions under her new chin for my comfort. But they said she did great and didn’t seem bothered by it, so I should be fine doing it next time. They also gave her a bath and washed her hair. That had to make her feel better.
Throughout the day, the swelling in her eye seemed to go down and at the same time it got blacker. And her incisions around her jaw are starting to bruise – along with her right ear – even on the inside, which is strange looking. But, everyone kept on coming up telling me how great she looks (which sounds really weird – you know, with her looking so bad and all). But I know they mean compared to what she could look like – clinically, I guess. So, that’s good.
Oh, and earlier, when the nurse called the surgeon, she told me he asked a few questions about how she was doing and said that if I was comfortable, I could take her home – TONIGHT! I was like, WHAT?! Is he CRAZY?! And for the first time – in all her many hospitalizations – I said, “no way”. She needs another night here, I need another night with her here and we need some time to prepare Murphy for her arrival and appearance. So, Tom talked to Murphy tonight, showed him her pictures and he will leave in the morning and we’ll be on the road before noon I expect.
They kept on saying that she would be transferred to the “trach pod” as they call it. But at 6:30pm, they told me that she would stay put in the PICU and be discharged in the morning from there. Which I was happy about.
In the afternoon she signed her first sign since surgery, “night night”, which is a good sign (that she wants to communicate I mean). As it got closer to 6:30, she was resting comfortably. I can’t remember if I explained or not, but they kick the families out of the PICU between 6:30 and 7:30 for shift change. Right at 6:30, she woke up suddenly and started crying (like she knew I was about to leave or something). She wanted me to hold her, so I let her sit up in bed and she went crazy trying to get in my arms. Then a different nurse (a guy) came to help (our nurse was very busy with the baby in the next bed). He said he would hold her and took her. Well, she was NOT happy about that and reached out for me. Then she signed “mama”. Oh, my goodness. Leaving her was the hardest thing EVER! I asked him if I could just hold her for a minute to help her calm down and he said NO! Jerk. And we had to leave.
Well, overall, even though the morning was rough – I left the hospital feeling pretty good (well, other than leaving my sweet girl crying for me, which was pure agony). I called the PICU after my mom and sister dropped me off at Melissa’s and her night nurse (the same one she’s had every night, which is great) told me that she was resting comfortably. Anyway, I definitely feel more confident that I will be able to handle her care now. And I have a feeling that she will look better in the morning, and every morning thereafter.
Oh, and the anesthesiologist that I loved came by to visit Harlie this morning. I was shocked. That has never happened. I loved him. So, I got a photo with him. He really made me feel better about this operation and that’s a big deal to me. It was nice to be able to tell him that.
And now, after writing this and thinking about the day, I’m excited about tomorrow. I feel like today was a big day for me. I feel like I made a lot of progress. And it feels really good to be excited about taking her home.
Oh, I uploaded some more photos. Thanks again for all your messages. I really appreciated reading them when I got “home” tonight. It gives me something to look forward to each night. Thanks for doing that.
Take care,
Christy
6am - Friday
I just spoke with Harlie's night nurse and she said that she is awake and signing like crazy. She said that everytime she goes near Harlie's bed, Harlie reaches out to her to be picked up. She's such a snuggle-bug! She said that another nurse knows a little sign language and was telling Kasey (her nurse) that she was signing "mama", "daddy", "please" (my girl knows her manners!), and "baby" (when Kasey showed her one of our family photos at her bedside). I suppose she was talking about herself. And she said she was hitting her fist on her chest - the sign for "Murphy" but of course, the nurse didn't know that one.
She also said that she hasn't given her any pain meds since 9pm last night and she's doing fine! Well, I can tell you - I won't be going that long between doses! I told them yesterday that I would need to be briefed on what is REALLY too much pain meds (you know the label is always so conservative). And if I couldn't give it to her, I would have to give it to myself! A lot for you, a little for me....
Anyway, I woke up very early this morning (around 4ish) because I am just so darn excited. Oh, and the nurse said that she can open her right eye now! YAY!
Well, just wanted to share the good news that Harlie is communicating and seems to be doing well.
For the most part, today was okay. I forgot to mention that Tom had to leave last night (Wednesday night) to go home so he could work today (Thursday). I know he has to work, just part of the deal with a 100% commission job. But I loved having him with me for two solid days during this hospital stay. It’s hard to explain, but it just makes things easier to handle when he’s with me. Plus, he had to take the car.
So, this morning (Thursday), Melissa took me to the hospital and luckily, some friends of Melissa’s helped her out with her daughter so Melissa could sit with me at the hospital for a little bit. When we got there, Harlie’s eye was worse. It was turning black. Still hard to look at. It takes me a few minutes to get myself together and get used to how she looks. It’s still pretty shocking at first. Melissa is great with it because she is a post-surgical nurse – and she knows that kind of stuff. Harlie kept on rubbing her bad eye. It hurt my stomach to watch her dig at it. For a little while this morning, I just didn’t know how I was going to take care of her when we brought her home. I have to take care of all her incisions three times a day. Ugh. I don’t like even looking at them, much less messing with them. And three times a day?!?! For weeks!!! God give me strength!
But I got to hold her. She sat up in the bed and, oh boy, she looked rough. But holding her helped me (and her) a lot. They said that sitting up would help with the swelling. Her head is still bleeding a little, but hopefully that will stop by the time we bring her home. Anyway, I held her for most of the morning and then when I got back from lunch, my mom was holding her. I would say that she was able to be held for most of the day, which is great.
One thing I wasn’t prepared for was the smell of dried blood. Not pleasant. And it’s coming from her mouth. Her nurse today was awesome and called the surgeon to ask what she could do about it. She used some sponges on a stick and wet it and then cleaned what she could get to. Then suctioned out the water. Wow what a difference that made. Her lip is still very swollen, but at least it was finally “clean”.
My mom and sister came down for the day. When they got there, Melissa and I left for lunch. Then she dropped me off back at the hospital and for the rest of the day, we just switched off (because they only allow two visitors at the bedside).
Later on, her nurse showed me how to clean her incisions. All of them look a lot better now that she was able to get off all the dried blood. So, I don’t feel as afraid as I was about cleaning them. I’ll be fine. And it didn’t seem to bother Harlie at all, so that will make it easier for me, too. Luckily, during one of our switches when I was out of the PICU her nurse and the respiratory therapist changed her trach ties - they had not been changed since Monday night (and they get changed at least once a day normally - Ewwww!!!!). I was not looking forward to doing that, I can tell you. The trach ties are WAY too close to her incisions under her new chin for my comfort. But they said she did great and didn’t seem bothered by it, so I should be fine doing it next time. They also gave her a bath and washed her hair. That had to make her feel better.
Throughout the day, the swelling in her eye seemed to go down and at the same time it got blacker. And her incisions around her jaw are starting to bruise – along with her right ear – even on the inside, which is strange looking. But, everyone kept on coming up telling me how great she looks (which sounds really weird – you know, with her looking so bad and all). But I know they mean compared to what she could look like – clinically, I guess. So, that’s good.
Oh, and earlier, when the nurse called the surgeon, she told me he asked a few questions about how she was doing and said that if I was comfortable, I could take her home – TONIGHT! I was like, WHAT?! Is he CRAZY?! And for the first time – in all her many hospitalizations – I said, “no way”. She needs another night here, I need another night with her here and we need some time to prepare Murphy for her arrival and appearance. So, Tom talked to Murphy tonight, showed him her pictures and he will leave in the morning and we’ll be on the road before noon I expect.
They kept on saying that she would be transferred to the “trach pod” as they call it. But at 6:30pm, they told me that she would stay put in the PICU and be discharged in the morning from there. Which I was happy about.
In the afternoon she signed her first sign since surgery, “night night”, which is a good sign (that she wants to communicate I mean). As it got closer to 6:30, she was resting comfortably. I can’t remember if I explained or not, but they kick the families out of the PICU between 6:30 and 7:30 for shift change. Right at 6:30, she woke up suddenly and started crying (like she knew I was about to leave or something). She wanted me to hold her, so I let her sit up in bed and she went crazy trying to get in my arms. Then a different nurse (a guy) came to help (our nurse was very busy with the baby in the next bed). He said he would hold her and took her. Well, she was NOT happy about that and reached out for me. Then she signed “mama”. Oh, my goodness. Leaving her was the hardest thing EVER! I asked him if I could just hold her for a minute to help her calm down and he said NO! Jerk. And we had to leave.
Well, overall, even though the morning was rough – I left the hospital feeling pretty good (well, other than leaving my sweet girl crying for me, which was pure agony). I called the PICU after my mom and sister dropped me off at Melissa’s and her night nurse (the same one she’s had every night, which is great) told me that she was resting comfortably. Anyway, I definitely feel more confident that I will be able to handle her care now. And I have a feeling that she will look better in the morning, and every morning thereafter.
Oh, and the anesthesiologist that I loved came by to visit Harlie this morning. I was shocked. That has never happened. I loved him. So, I got a photo with him. He really made me feel better about this operation and that’s a big deal to me. It was nice to be able to tell him that.
And now, after writing this and thinking about the day, I’m excited about tomorrow. I feel like today was a big day for me. I feel like I made a lot of progress. And it feels really good to be excited about taking her home.
Oh, I uploaded some more photos. Thanks again for all your messages. I really appreciated reading them when I got “home” tonight. It gives me something to look forward to each night. Thanks for doing that.
Take care,
Christy
6am - Friday
I just spoke with Harlie's night nurse and she said that she is awake and signing like crazy. She said that everytime she goes near Harlie's bed, Harlie reaches out to her to be picked up. She's such a snuggle-bug! She said that another nurse knows a little sign language and was telling Kasey (her nurse) that she was signing "mama", "daddy", "please" (my girl knows her manners!), and "baby" (when Kasey showed her one of our family photos at her bedside). I suppose she was talking about herself. And she said she was hitting her fist on her chest - the sign for "Murphy" but of course, the nurse didn't know that one.
She also said that she hasn't given her any pain meds since 9pm last night and she's doing fine! Well, I can tell you - I won't be going that long between doses! I told them yesterday that I would need to be briefed on what is REALLY too much pain meds (you know the label is always so conservative). And if I couldn't give it to her, I would have to give it to myself! A lot for you, a little for me....
Anyway, I woke up very early this morning (around 4ish) because I am just so darn excited. Oh, and the nurse said that she can open her right eye now! YAY!
Well, just wanted to share the good news that Harlie is communicating and seems to be doing well.
Thursday, June 5, 2008
Post-Op Day 1
Well, they were right, she looked worse today (Wednesday). But, honestly, not as bad as I was expecting. I forgot that they told us yesterday that normally they can’t open their eyes because they are swollen shut. Luckily, only one is swollen shut – her right eye. That is the side that had the most trauma. They harvested the bone from the right side of her skull (cut her from her right ear to the top of her head) and she was lying toward her right, so all the blood seemed to pool on that side.
They removed the bandages today. Karen (Dr. Magee’s nurse and coordinator) said that after the bandages are removed the swelling will be more spread out over her head and not so concentrated in her face. She said that the peak will be on the 3rd day and then it will get better from there on out.
Dr. Magee and Dr. Rosenblum came by today. Dr. Magee apologized for missing us yesterday. At least that was something. He said she looks great. They also said that they are going to schedule the wire removal for 8 to 10 weeks from now. So, we’ll just have to see what they give us. She will need anesthesia, but it will be an outpatient procedure, which is good.
They also took out the drain that was on the right side of her face. She is definitely bleeding less, but still more than I am comfortable with. Today she flipped herself over on her belly (scared me to death and I had to turn away – luckily the nurse was there when she did it) and I could see all the blood that was on the bed. I will be much happier when she’s not bleeding anymore. Well, duh, right? Heck, for that matter, I’ll be much happier when it’s the end of August and all this is behind us!
They started feeding her a little today. And they stopped the morphine and sedation meds. Normally, I’m glad about getting off the IV meds, but, I have to say, I would rather her sleep through as much of this as possible. She opened her left eye today and looked at me and started crying. She doesn’t cry much, but I think it’s because it hurts – to cry, I mean. She starts to, and then stops pretty quickly. She reached out her arms to me, which broke my heart. I can only imagine how she must feel. She looks like she’s been hit by a train. The pictures just don’t do her justice. She looks much worse in person.
The plan is that she will stay in the PICU tonight (Wed), and possibly move to the floor tomorrow (Thurs). The good thing is that here they have a place for trach kids. It only has 5 beds though, so if there’s an open bed there, that’s where she’ll go. I’m fine with that. Her trach has always been the issue with the floor with me. Anyway, then, they are thinking they will discharge her on Friday. Frankly, it is VERY hard for me to think about taking her home. This is the first time I’m not rushing her out the door. It is just hard to believe that she’ll go home like that. I joked that I cannot take her to Murphy’s school to pick him up any time soon, that’s for sure.
Well, it is late and I really need to get some sleep. I added some photos. Some might consider them “rough”, so be prepared. I did spare you the one of her head incision. Once it’s cleaned up a little more, it won’t look so bad and then I can show you.
Thank you again for all your messages. It has been REALLY nice coming “home” (to Matt and Mel’s house) to read them. What a difference it makes to know that I have your support.
Take care,
Christy
They removed the bandages today. Karen (Dr. Magee’s nurse and coordinator) said that after the bandages are removed the swelling will be more spread out over her head and not so concentrated in her face. She said that the peak will be on the 3rd day and then it will get better from there on out.
Dr. Magee and Dr. Rosenblum came by today. Dr. Magee apologized for missing us yesterday. At least that was something. He said she looks great. They also said that they are going to schedule the wire removal for 8 to 10 weeks from now. So, we’ll just have to see what they give us. She will need anesthesia, but it will be an outpatient procedure, which is good.
They also took out the drain that was on the right side of her face. She is definitely bleeding less, but still more than I am comfortable with. Today she flipped herself over on her belly (scared me to death and I had to turn away – luckily the nurse was there when she did it) and I could see all the blood that was on the bed. I will be much happier when she’s not bleeding anymore. Well, duh, right? Heck, for that matter, I’ll be much happier when it’s the end of August and all this is behind us!
They started feeding her a little today. And they stopped the morphine and sedation meds. Normally, I’m glad about getting off the IV meds, but, I have to say, I would rather her sleep through as much of this as possible. She opened her left eye today and looked at me and started crying. She doesn’t cry much, but I think it’s because it hurts – to cry, I mean. She starts to, and then stops pretty quickly. She reached out her arms to me, which broke my heart. I can only imagine how she must feel. She looks like she’s been hit by a train. The pictures just don’t do her justice. She looks much worse in person.
The plan is that she will stay in the PICU tonight (Wed), and possibly move to the floor tomorrow (Thurs). The good thing is that here they have a place for trach kids. It only has 5 beds though, so if there’s an open bed there, that’s where she’ll go. I’m fine with that. Her trach has always been the issue with the floor with me. Anyway, then, they are thinking they will discharge her on Friday. Frankly, it is VERY hard for me to think about taking her home. This is the first time I’m not rushing her out the door. It is just hard to believe that she’ll go home like that. I joked that I cannot take her to Murphy’s school to pick him up any time soon, that’s for sure.
Well, it is late and I really need to get some sleep. I added some photos. Some might consider them “rough”, so be prepared. I did spare you the one of her head incision. Once it’s cleaned up a little more, it won’t look so bad and then I can show you.
Thank you again for all your messages. It has been REALLY nice coming “home” (to Matt and Mel’s house) to read them. What a difference it makes to know that I have your support.
Take care,
Christy
Wednesday, June 4, 2008
Jaw Surgery Info...
Wow, does it stink to not have wireless in the hospital!!! All my thoughts are stuck in my head and now there's just not enough time to write about everything.
Yesterday was agony, as was expected. We were the second family to arrive at day surgery, shortly before 5:30am. They weren't even allowing people up the elevator yet. So, when they let us in we were the second to sign in. We were the only family who waited in the waiting room ALL day. They called every hour during the surgery. I have to say that I liked some aspects of CHKD. Definitely not as high-tech as others (no pager system, no wireless, etc.) but more personable I think.
Surprisingly, I felt very comfortable with anesthesia (one of my greatest worries considering her heart issues). The doctor was awesome and I liked him a lot. One of the first things he said was that Harlie had been on his mind all weekend. And he said he meant it. He knew her history by heart, and only had a few questions. Then, after she had been in for more than an hour, he came out to the waiting room to tell us what was going on and how she was doing. He said the funniest thing. He said that he wanted to come out and talk to us because he knew we would not be satisfied with what they normally say when they call. He said that he overhears the nurse call the parents and say, "well, the surgeon is doing the surgery...". Gee, thanks for the great info... Well, we certainly appreciated his humor, and his thoughtfulness.
We've never had the anesthesia doc come out and talk to us before. But I know a lot more now about where they need to put the lines and I try to spare Harlie a bit of bruising by telling them which places simply don't work anymore. They never listen and each one thinks "they" have the skills to do it. I'm always right. And I don't mean that to brag. So, he came out to tell me about that stuff, which we appreciated a lot.
Then the general surgeon who put in all her lines came out to tell us more about that. Her femoral arteries in her legs (the ones they like the best) are toast. They haven’t worked for a year now (since her 2nd heart cath last June). Which I told them. Yet, they keep trying… So, they had to go for her subclavian artery (below her collar bone). She has another arterial line in her wrist and a regular IV in her foot. Hopefully the subclavian one will come out today. That was how they gave her blood during the surgery. I think the surgeon said they had to give her a liter and a half (but don’t hold me to that). We were very appreciative that a general surgeon put in her lines. AND came out to tell us how it went. So, overall, we were really impressed with CHKD.
There were two things I didn’t like.
One was that neither the neurosurgeon, nor Dr. Magee came out to talk to us after the surgery. So far we have always talked to the surgeon afterwards. I do know that Dr. Magee had a 14-hour surgery scheduled AFTER Harlie’s (he’s crazy and I see that his energy has not decreased since I left Operation Smile 11 years ago!). So, he had to run into that one. Nuts. I suppose that’s the same deal with the neurosurgeon – but still, Harlie’s our daughter and he just cut open her head and exposed her brain, and it would be nice to know it went perfectly. Us picky parents…
The second was that we sat there, all day, receiving hourly phone calls letting us know that things were still going okay. At 2:15pm she called to say they were “wrapping things up” and surgeon would be out shortly. TWO hours later, we are still sitting there. I knew that we had been forgotten, yet AGAIN. All day we sat there watching the system work for every other parent! Ugh. This is the 3rd time that communication has broken down after a surgery. So, I asked the lady that was there in the waiting room to check, but she said they always say that and it always takes longer than we think. I asked her to call back there, but she didn’t. I just thought it was strange that we went all day getting hourly updates and then two hours with nothing – after saying it was almost over. Luckily, at 4:15 the speech pathologist (Beth) who works in Dr. Magee’s office came by to ask us what we had heard (nothing) and she took us to find someone.
We found Karen, the nurse coordinator for Dr. Magee and she found Dr. Rosenblum (Dr. Magee’s partner who assisted with Harlie’s surgery) and got him to come out and talk to us.
He said she did great and she looks really different. Both Beth and Karen had already been to see her in the PICU and said the same thing. I asked “different bad, or different good”? They all said “different good”. Dr. Rosenblum said that she will have a major underbite for a while. They have to bring her bottom jaw forward and up past her top teeth to get it to set in place and after the wires are gone and she grows a bit, it will recede and look more normal. Karen told us it could take a few months after the wires come out – it is different for each child. He also said that she will probably be in the PICU for at least 2 nights. After that we’ll just have to see how she does.
Side note, Beth was great and had already found us earlier in the day to tell us that she spoke at a conference on Monday and spoke about Harlie. She said that she told them about how all the odds were against her and after a long hard 20 months, she is signing over 30 words and doing great. Then she said she would watch some of Harlie’s surgery.
I don’t know if you remember me mentioning that her surgery was scheduled during a program called “Physicians Training Program”. It is an annual event with Operation Smile where they bring docs from all over the world to the US for 2 weeks or so to learn about craniofacial procedures and stuff. Back when I worked for OpSmile, I was one of the ones who “chaperoned” them around for some of the fun stuff – like Harbor Fest, Busch Gardens and their favorite - a trip to Wal-mart (yes, a highlight for them). It was a lot of fun because most of them are from developing countries where they have very little, if not nothing.
Anyway, they video the surgeries and show them on a big screen in an auditorium at the hospital for all the docs. Beth said that she watched some of it and that Harlie did great. I have to admit, that I asked the neurosurgeon at our visit two weeks ago if they let parents watch. He said, without any hesitation, “absolutely not”. I know, sounds morbid and sick, but, waiting for hours yesterday, I wanted to go find that auditorium, just so I would KNOW what was going on. The waiting is just horrendous! But, obviously, I did no such thing.
So, back to Harlie, after talking with Dr. Rosenblum, Beth walked us to the PICU to go see her. The anticipation was killing me. Knowing that everyone else knew what my little girl looked like – and I, just – HER MOTHER – did not, was agony. Well, even though I tried to be prepared, the emotions of the day, and seeing her like that, and looking “different” got the best of me and I could not help but just cry. I haven’t done that in a long time. I think they all felt sorry for me, but I told them with this situation AND the pregnancy hormones, what could I do?
She has kissable cheeks now! Well, at least it looks like she’ll have them, which is wonderful. As you can see from the pics Tom uploaded last night in our zombie like state, she is completely bandaged up. And there is a lot of blood. There was blood after her heart surgery – but it was all contained in tubes. To see it coming out of her mouth and out of her trach is very unsettling.
Because they had to harvest the bone from her skull, they had to cut the dura (the covering of the brain) – I think – to relieve pressure and it is bleeding and draining down into her throat – causing her to cough it up and out her trach. But since she has a leak around her trach, it comes out the stoma, too, so it is all around her trach. They are suctioning out what they can, but there’s only so much you can get to with her mouth being wired shut.
Her bottom lip is very swollen and now you can see her bottom teeth VERY clearly, which is weird. They all said that she will look worse today. I am trying to be prepared, but it is hard to prepare yourself for something you really can’t imagine. I mean, how do you picture your child looking different? I have tried, for months, to picture her with a chin, but it has been impossible. I loved her little face the way it was! Now it is gone. And there’s a new face that I still can’t see!!
I am so glad that Tom is able to be here today. It is so much better when we are together. But if she doesn’t get discharged tomorrow, then he will probably have to go back to work on Thursday. And then he will have to come back on Friday because hopefully that is the latest she will be here.
Well, I need to go. We aren’t allowed into the PICU until after 8:30am and we want to be there. I will try to write when we get back. We have decided to stay at our friend’s house instead of moving to the Ronald McDonald House. More comforting.
Thank you for all your messages and support. I know many of you don’t know what to say, but it is just nice to know that you care. This certainly is a huge hurdle for us. And hopefully a life-changing one – in a good way!
Take care,
Christy
Yesterday was agony, as was expected. We were the second family to arrive at day surgery, shortly before 5:30am. They weren't even allowing people up the elevator yet. So, when they let us in we were the second to sign in. We were the only family who waited in the waiting room ALL day. They called every hour during the surgery. I have to say that I liked some aspects of CHKD. Definitely not as high-tech as others (no pager system, no wireless, etc.) but more personable I think.
Surprisingly, I felt very comfortable with anesthesia (one of my greatest worries considering her heart issues). The doctor was awesome and I liked him a lot. One of the first things he said was that Harlie had been on his mind all weekend. And he said he meant it. He knew her history by heart, and only had a few questions. Then, after she had been in for more than an hour, he came out to the waiting room to tell us what was going on and how she was doing. He said the funniest thing. He said that he wanted to come out and talk to us because he knew we would not be satisfied with what they normally say when they call. He said that he overhears the nurse call the parents and say, "well, the surgeon is doing the surgery...". Gee, thanks for the great info... Well, we certainly appreciated his humor, and his thoughtfulness.
We've never had the anesthesia doc come out and talk to us before. But I know a lot more now about where they need to put the lines and I try to spare Harlie a bit of bruising by telling them which places simply don't work anymore. They never listen and each one thinks "they" have the skills to do it. I'm always right. And I don't mean that to brag. So, he came out to tell me about that stuff, which we appreciated a lot.
Then the general surgeon who put in all her lines came out to tell us more about that. Her femoral arteries in her legs (the ones they like the best) are toast. They haven’t worked for a year now (since her 2nd heart cath last June). Which I told them. Yet, they keep trying… So, they had to go for her subclavian artery (below her collar bone). She has another arterial line in her wrist and a regular IV in her foot. Hopefully the subclavian one will come out today. That was how they gave her blood during the surgery. I think the surgeon said they had to give her a liter and a half (but don’t hold me to that). We were very appreciative that a general surgeon put in her lines. AND came out to tell us how it went. So, overall, we were really impressed with CHKD.
There were two things I didn’t like.
One was that neither the neurosurgeon, nor Dr. Magee came out to talk to us after the surgery. So far we have always talked to the surgeon afterwards. I do know that Dr. Magee had a 14-hour surgery scheduled AFTER Harlie’s (he’s crazy and I see that his energy has not decreased since I left Operation Smile 11 years ago!). So, he had to run into that one. Nuts. I suppose that’s the same deal with the neurosurgeon – but still, Harlie’s our daughter and he just cut open her head and exposed her brain, and it would be nice to know it went perfectly. Us picky parents…
The second was that we sat there, all day, receiving hourly phone calls letting us know that things were still going okay. At 2:15pm she called to say they were “wrapping things up” and surgeon would be out shortly. TWO hours later, we are still sitting there. I knew that we had been forgotten, yet AGAIN. All day we sat there watching the system work for every other parent! Ugh. This is the 3rd time that communication has broken down after a surgery. So, I asked the lady that was there in the waiting room to check, but she said they always say that and it always takes longer than we think. I asked her to call back there, but she didn’t. I just thought it was strange that we went all day getting hourly updates and then two hours with nothing – after saying it was almost over. Luckily, at 4:15 the speech pathologist (Beth) who works in Dr. Magee’s office came by to ask us what we had heard (nothing) and she took us to find someone.
We found Karen, the nurse coordinator for Dr. Magee and she found Dr. Rosenblum (Dr. Magee’s partner who assisted with Harlie’s surgery) and got him to come out and talk to us.
He said she did great and she looks really different. Both Beth and Karen had already been to see her in the PICU and said the same thing. I asked “different bad, or different good”? They all said “different good”. Dr. Rosenblum said that she will have a major underbite for a while. They have to bring her bottom jaw forward and up past her top teeth to get it to set in place and after the wires are gone and she grows a bit, it will recede and look more normal. Karen told us it could take a few months after the wires come out – it is different for each child. He also said that she will probably be in the PICU for at least 2 nights. After that we’ll just have to see how she does.
Side note, Beth was great and had already found us earlier in the day to tell us that she spoke at a conference on Monday and spoke about Harlie. She said that she told them about how all the odds were against her and after a long hard 20 months, she is signing over 30 words and doing great. Then she said she would watch some of Harlie’s surgery.
I don’t know if you remember me mentioning that her surgery was scheduled during a program called “Physicians Training Program”. It is an annual event with Operation Smile where they bring docs from all over the world to the US for 2 weeks or so to learn about craniofacial procedures and stuff. Back when I worked for OpSmile, I was one of the ones who “chaperoned” them around for some of the fun stuff – like Harbor Fest, Busch Gardens and their favorite - a trip to Wal-mart (yes, a highlight for them). It was a lot of fun because most of them are from developing countries where they have very little, if not nothing.
Anyway, they video the surgeries and show them on a big screen in an auditorium at the hospital for all the docs. Beth said that she watched some of it and that Harlie did great. I have to admit, that I asked the neurosurgeon at our visit two weeks ago if they let parents watch. He said, without any hesitation, “absolutely not”. I know, sounds morbid and sick, but, waiting for hours yesterday, I wanted to go find that auditorium, just so I would KNOW what was going on. The waiting is just horrendous! But, obviously, I did no such thing.
So, back to Harlie, after talking with Dr. Rosenblum, Beth walked us to the PICU to go see her. The anticipation was killing me. Knowing that everyone else knew what my little girl looked like – and I, just – HER MOTHER – did not, was agony. Well, even though I tried to be prepared, the emotions of the day, and seeing her like that, and looking “different” got the best of me and I could not help but just cry. I haven’t done that in a long time. I think they all felt sorry for me, but I told them with this situation AND the pregnancy hormones, what could I do?
She has kissable cheeks now! Well, at least it looks like she’ll have them, which is wonderful. As you can see from the pics Tom uploaded last night in our zombie like state, she is completely bandaged up. And there is a lot of blood. There was blood after her heart surgery – but it was all contained in tubes. To see it coming out of her mouth and out of her trach is very unsettling.
Because they had to harvest the bone from her skull, they had to cut the dura (the covering of the brain) – I think – to relieve pressure and it is bleeding and draining down into her throat – causing her to cough it up and out her trach. But since she has a leak around her trach, it comes out the stoma, too, so it is all around her trach. They are suctioning out what they can, but there’s only so much you can get to with her mouth being wired shut.
Her bottom lip is very swollen and now you can see her bottom teeth VERY clearly, which is weird. They all said that she will look worse today. I am trying to be prepared, but it is hard to prepare yourself for something you really can’t imagine. I mean, how do you picture your child looking different? I have tried, for months, to picture her with a chin, but it has been impossible. I loved her little face the way it was! Now it is gone. And there’s a new face that I still can’t see!!
I am so glad that Tom is able to be here today. It is so much better when we are together. But if she doesn’t get discharged tomorrow, then he will probably have to go back to work on Thursday. And then he will have to come back on Friday because hopefully that is the latest she will be here.
Well, I need to go. We aren’t allowed into the PICU until after 8:30am and we want to be there. I will try to write when we get back. We have decided to stay at our friend’s house instead of moving to the Ronald McDonald House. More comforting.
Thank you for all your messages and support. I know many of you don’t know what to say, but it is just nice to know that you care. This certainly is a huge hurdle for us. And hopefully a life-changing one – in a good way!
Take care,
Christy
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