Post-op Day 7

Harlie is feeling much better today. She actually asked me to brush her teeth this morning. And she is now letting us wipe her mouth. Those are some big improvements!

After Tom got to the room this morning, I left and ran the park. I was supposed to run 6 miles, but wasn't sure I felt up to it. But, while running in the park, I ended up running with a girl and we chatted and the miles just went by. So I ended up running my 6, and they were very enjoyable to boot!

When I got back to the hospital, I found Harlie up in a chair.

In that photo she was pressing the up and down buttons on the side of her bed with her toe. She thought that was funny. And Tom told me that physical therapy came by and got her up walking a little bit with a walker (in her room only - baby steps). Her spirits are definitely up.

We gave her a bath and washed her hair for the first since since surgery. She protested, but I KNOW she felt so much better after. When we towel dried her hair, the towel was brown. There's still some blood in her hair. It will take a few washings I guess. But she wasn't up for repeats today. That wore her out and then she took a nap. She definitely struggle a bit when she was laying flat on her back. She's been elevated 24/7 since the surgery. So, we'll have to figure something out at home...

She still has some swelling around her neck. Her trach ties were way shorter than they usually are. I'm guessing she can't really swallow yet. She's probably swollen on the inside, too.

We are ready to leave now. We could have left today, but she is having a hard time coming off the oxygen. We are going to have to travel with it. So, there are some logistical issues that they are working on. I guess you can't take a regular oxygen tank on the plane? So we have to have a portable oxygen concentrator. I have no idea how this is all going to work, but we'll get it done. We are certainly not the first family in this situation.

Our follow up appointment will be in four to six weeks. Kinda hard to think about coming back when we haven't even left yet.

Well, Tom and I are going to go to dinner for our 10th wedding anniversary. Can't believe 10 years have gone by.

Thank you for all your love and support!

Much love,

Christy xoxo

 

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Post-op Day 6

Overall, today went well. Actually, considering the way things could have gone, things went great and we are pretty happy.

I wasn't able to blog earlier, but after talking (for the 100th time) to ENT, we finally spoke to the actual doc who was going to perform the "procedure" of draining her BAHA site. What he said made sense. He said that there might be a blood vessel that isn't scarring down, feeding the area with blood. So he was going to open it up, going with the same incision that was originally done, and see what was going on. His main concern was potential infection of the hardware (the actual titanium implants) which would royally suck. He said if that was the case, he would have to remove them. Ugh! Please, don't even say such a thing! What a nightmare that would be!

She was scheduled to go to the OR at 12:30, but wasn't taken until closer to 2:00 I think. When we were down there, they went over the consent again (I had already signed it). And while I totally get it, sometimes I just don't have the patience for all that redundancy. And quite frankly, I already heard it (and understand it). I don't want to hear the risks again. I can't back out of it! Then I had to sign consent for anesthesia. Then one of the nurses asked a doc if we had to sign consent for the echo (I'll explain that in a sec) and before he could answer I said, "No." Of course she left to double check and came back and said that I didn't have to sign one.

Anyway, by the time they took her, we had discussed this ad nauseam, and I just wanted it to be over.

Okay, about the echo (echocardiogram, which is an ultrasound of the heart)... Yesterday, cardiology came in to speak with us. They had studied her history and wanted to talk over some things. Since she was overloaded with fluid, they were concerned that her mild leak around her tricuspid valve could have gotten worse. So, they ordered an echo to be done while she was in the OR. That way they could really take their time and get some good images while she was calm. With her single ventricle heart, when she cries really hard it affects her circulation, so the images aren't ideal. And apparently most kids hate getting echos. And since she now has a reputation for not being cooperative and being super self-protective, they didn't want to make it worse for her. Isn't that nice?

Anyway, she seemed to be in the OR forever. It took way longer than I thought it would. And we finally got back to her room sometime between 6 and 7.

The results were great. He drained the area and said all looked great in there, so no worries about the implants. Whew! He put a dressing on it with some kind of tube that's sutured into the dressing, so it stays open for now, but comes out when the dressing comes off. Of course I started to ask when we can go home. No one will say for sure, but it's possible we can leave this weekend (assuming all goes well, of course).

We never heard from cardiology about her echo, so I'm assuming it was fine and that there was nothing alarming. After they took her back into the OR, we went to go get some coffee. By the time we got back, the plastic surgeon was already done with his part (pulling the drains in her leg and neck and cleaning up her mouth and incisions). And they put a nice, pink cast on her leg. Then ENT did their thing and he came out to talk to us. Then the last thing was the echo, which probably took the longest. I was getting impatient (which is so not me) and I told Tom that I felt like we were at a car mechanic's - we went in for one thing and they found 3 other things that needed to be fixed.

All joking aside, this is a great hospital. But I'm ready to go home. And I know that Harlie will recover better, and faster at home. So that's where we need to be. I think plastics is okay with us taking her home whenever we are ready. And we are ready. So, it's up to ENT and cardiology. So, we'll see what they say tomorrow. I doubt very seriously that we'll get discharged tomorrow. But I think Saturday or Sunday is feasible.

So, I'll leave you with another picture of Harlie smiling. This was before the whole OR thing today.

She was such a champ, by the way. No drugs, they just took her back stone sober and she was so brave even though she was scared. I told her it would be over quick and to be strong, and she was!

Well, that's it for today. More tomorrow! Thanks for all your continued support!

Much love,

Christy xo

 

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Post-op Day 5

Good news!!! The Lasix was key and within an hour or so Harlie peed a ton, and was coughing way less. And she (and I) got a good night's sleep. I've been staying the nights. More on that in a sec.

They are still going to wait till tomorrow for the OR. Which is fine by us. No sense in being risky now. And I spoke with Harlie's ENT from home who did the BAHA surgery. She said that if we were home, she would drain it and put a drain tube in to keep it from accumulating again. It's a hematoma, by the way. I don't know how long the tube will stay in, but that might be what keeps us here longer. Bummer. But, I feel SO much better now that we talked and I know how she feels. So I'm totally on board with the plan and it is nice to not be stressed about it anymore. Woo hoo!

And for more good news... Remember when I said that Harlie wouldn't even let us touch her in a nice way? Well take a look at this...

That's her hand in mine!!! I felt so honored! And loved! And then, a few minutes later I got this out of her...

A smile!!! Can you believe it? She was laughing at me wearing my "powered by optimism" Life is Good hat. I don't know why she found that so funny, but who cares?!

Thrilling moments here in Boston! Seriously!!! If I had my computer I would have gotten rid of her red eyes, but, I'm doing the best I can with the technology I have available.

So, back to our logistics here...

Tom and I have our little routine worked out. I stay the nights - the bed is small and terribly uncomfortable - and it would only be worse for him. He stays till after dinner then rides a bike back to the hotel. They have these bike stations here that you rent a bike from one station and you can return it at any station. They have stations all over. It's called Hubway. And conveniently enough, there is a station right by the hospital and right by the hotel.

Then he gets up early and works out at the hotel gym and then rides a bike back to the hospital. Then I go for a run, heading back to the hotel. There is this park called The Emerald Necklace.

It's so nice and peaceful. I just love it! And it's on the way to the hotel from the hospital.

After I run a loop or two at the park, I run on to the hotel, shower, change and then walk back to the hospital (it's .9 miles). Although yesterday I took the shuttle because it was raining. It has been working out great for both of us to get out of the room and do what we like. I've been able to run more here than at home! Well, the weather is awesome, so that helps. And I think I'm so grateful to be out that I have been having great runs.

After a while of sitting in the room, it gets old. So one of us will go take a walk or something. It is so much better having Tom here.

If all goes well, maybe we'll get to come home this weekend. I think at this point, it is up to her lungs (to continue to improve) and the ENT docs, as far as how long that drain line needs to stay in.

That's it for now! Thank you so much for continuing to support us! We are so lucky and blessed to have such an awesome group of family and friends. We just couldn't do it without you!!!

Much love,

Christy xoxo

 

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Late night update for Day 4

So, there have been some new developments. Harlie's secretions are now thin and clear/white, but they are so plentiful! We have been suctioning all day. And her nurse has been doing some chest PT.

A doc from anesthesia came by to talk to me about tomorrow's trip to the OR. Tom wasn't here because he was doing our laundry. My life is so much better when he is here to help me!

Anyway, she did not like the way Harlie looked at all. And while she was here Harlie asked to go potty. So I went and got our nurse who helped me get her there. While sitting on the potty, Harlie did look pretty bad. And blue in the face. Of course it's hard to tell with some bruising already there.

When we got her back in bed and hooked her up to the pulse ox, her sats we're 68!!!! And you could just see how uncomfortable she was. She's still on some oxygen, so when she came off that she desatted immediately and needed the oxygen to come back up. And that's never a good sign. The doc listened to her lungs and said she sounded coarse and was wheezing. She said that she is not well enough to go into the OR tomorrow. And they ordered chest x-rays.

It took forever to get the x-rays and we are still waiting on them to read them. But it looks like she might have atelectasis (collapsed lung) or the beginnings of pneumonia. I don't know. Either way, it's going to slow down our progress.

I feel so bad for her. She really is miserable. And I think I can see that she just feels sick, that it's not just wound pain anymore. She's been coughing a ton, so there's been fresh bleeding from her mouth and a lot of pressure to her head.

She won't let anyone touch her in any way. Not even me or Tom can hold her hand, brush the hair out of her face or wipe the bloody drool from her mouth. If her gown comes down off her shoulders and I try to put it back up, she blocks me with her hand. She's that protective. While I totally get it, it kills me that she doesn't even trust us - her parents. I'm thankful that the staff here seems very understanding and compassionate about it.

It's now been hours since I started this entry. Apparently she has atelectasis and fluid in or around her lungs (they weren't very clear). So they are giving her Lasix to help her get rid of that extra fluid. Her whole body looks swollen to me. So I'm very hopeful that after some Lasix she'll feel better.

Okay, that's it for today. Tomorrow is a new day. And hopefully it will be a good one. Our spirits are still good - so don't worry about us.

Thanks for checking in!

Much love,

Christy xoxo

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Post-op Day 4

Let's see... Where to begin?

Last night the team came in and said they were going to pull her leg drain and put a cast on today. So they stopped feeds and all that good stuff so she could go under light sedation for that. The plastics fellow said that they were going to leave the drain line in her neck for another day. I was kinda bummed at that because she really needs to be cleaned up and there is a piece of gauze that they think might be stuck in her incision. The gauze is officially disgusting and I would think its only a breeding ground for bacteria and infection, so I just want it gone.

Then this morning the team came in and said that they've decided she needs to go into the OR to have this done. And they can't get her on the schedule for today. So she now has an OR time of 3pm tomorrow. Which is actually good for the neck drain, because that means they could pull it and get rid of that gauze and clean her up.

Apparently the driving force of all this hoopla is her stupid freaking BAHA incision. They are trying hard to make me regret that decision. I really, really just wish they would leave it the hell alone. But they will not quit! Personally, I think the more they mess with it and poke it, the more they increase the risk of infection.

I e-mailed her ENT at home and asked her what she thought. I did not hear back from her, but instead heard from the team here that she agreed with them and said it was okay. I really would like to hear that from her myself. I don't know why she couldn't just reply to my message. Is that too much to ask?

Anyway, I'm trying to think of the positives of going back into the OR. I just hope it doesn't cause a horrible negative reaction with them draining her BAHA site. I'm just not convinced the end result is going to be any different than where we were before they ever saw it. For the record.

Her secretions are getting a little suspect. They are brownish-yellowish in color and she is uncooperative when it comes to suctioning. Which is weird because she normally asks to be suctioned. They increased her breathing treatments and gave her some saline nebs during the night (and this morning), so hopefully that will help. We're just a little nervous that all this non-movement is going to cause pneumonia. She obviously can't get up and walk around.

So, we asked about putting her in a cart and taking her somewhere. Down in the lobby they have this thing where these balls go through sort of an obstacle course. She likes watching that. So maybe just getting out of the bed might help. Of course things are never that easy...

On day 2, they took some trach secretions to culture - just to get a baseline of what she has going on (not because they suspected an infection). Pseudomonas is a bacteria that tends to colonize on/around the trach and can live there with no harm to her. However it was pseudomonas that was in her necrotic bone several years ago after her last jaw reconstruction. So, they just wanted to see what's there to make sure they have her on the right antibiotics.

But because of that, they put her on precautions with infectious disease. Which means she can't go anywhere until the cultures come back. Grrrr! So the nurse called ID to ask them what's going on with it and to ask if she can leave the room. In this case, they are playing it WAY too safe. Hopefully we'll get a favorable answer soon.

I'll have to post pictures later. I can't get them to upload right now.

So, the team just came in and solidified all the plans for tomorrow. After they left, Tom said, "So, basically she's getting the world's most expensive bath." Ha ha!

That's it for now. Thanks for checking in and continuing to keep her in your thoughts!

Much love,

Christy xoxo

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Post-op Day 3

Harlie was moved to the floor yesterday. Which is fine, really. The only negatives to the floor is that they don't allow cell phone use in the rooms. And I love how they follow that with a very positive, "but you have your own room phone you can use!" that doesn't make long distance phone calls, so that works great for us in from out of town (which must be a good portion of their patients). I just find that rule not family friendly. The other thing is that only one parent can stay (overnight, I mean) in the room. Now I do understand this rule especially considering the size of these rooms. There's really no way two parents could stay.

So, last night I stayed with her and let Tom go back to the hotel. The "bed" was horrible, not that I expected anything different. But Harlie had a "great" night and an awesome nurse. Seriously, she was one of the best we've ever had, including ICU nurses.

When we were moved to the floor in the afternoon, we got a nurse who is training a new nurse. Quite frankly, I think that's a great assignment to get, so I was really happy. And the nurse said the normal ratio is 4 patients to 1 nurse. But since Harlie has a trach she qualifies for 2 patients to 1 nurse. Awesome! I wish they had that everywhere!

Anyway, the day nurse said they gave Harlie the best night nurse, and they were not lying. Shannon was awesome! She worked her butt off last night and I didn't have to ask for anything. She said she works again Wednesday night and that she'll ask to get her again. Loved her!

We got the same two nurses from yesterday today, so that's great too. I have to say that I am super impressed with the quality of the nurses on the floor. So I am happy to be here. Plus they take vitals less often, so hopefully Harlie feels like she's being bothered less, too.

Here's what she looks like today:

She definitely can't open that left eye much at all, so I am really trying not to worry. I know, I need to be patient.

Her micro surgeon came by to see her yesterday and he said she looks really good. He said they still need to remove the drain lines from her leg and neck and put a cast on her leg. But given the trauma of yesterday, he said he wanted to give her a day off. So they will do that on Tuesday.

They are going to try the sedation thing again. I told them I think they need to give her more meds this time.

As far as how she's doing... She's getting tube feeds now. They started slowly to avoid constipation issues. Which I'm happy to say, it looks like we might have been succesful. She's peeing some, although she's not peeing as much as she should given the amount of fluids she's getting. I think the problem is that she is scared to sit on the potty, or it hurts to sit straight up. Probably a little of both.

She did indicate to me that she hurt. She cradled the right side of her face with her hand (the way you would do if you had a bad tooth ache). I asked her if she hurt and she nodded yes. Yes!!! Communication! What a good sign!

So they gave her some pain meds and they are going to give it every four hours. She seems to be more comfortable now.

Then, I signed and told her that I loved her, and I don't know if she was just groggy and signed it back out of habit, but she did - she signed "I love you" back to me!!! Woohoo!

She is a funny girl! She's hiding under a blanket, which is fine by me. And when someone comes in, she closes her eyes and acts like she's sleeping. When she hears them leave, she opens them again. She really cracks me up.

I forgot to tell you what Tom and I did on Friday while Harlie was in surgery. We kept trying to take the stairs, but the hospital is pretty confusing. So, we walked out a stairwell door that said "no re-entry, key card required." I, of course, questioned this, but Tom said, and I quote, "we're not going to get locked in the staircase, Christy." uh-huh.

We got to the bottom and it said, "emergency exit only - door will alarm and security will arrive within x-amount of minutes." I can't remember how long. Luckily, there was an intercom button, so we pushed it and security had to come let us out.

Oh, and I never told you about my hair. So, you might know that I've most likely lost my mind and I have some of my hair dyed pink. The girl who does my hair has to bleach that section and then I dye it when it fades (every 2 weeks or so). Well, Tom posted a pic on FB a few weeks ago that showed a girl with streaks of blue and pink in her hair. And he said "double dog dare you." So, when I went to get my hair cut on Tuesday, I took my pink (and newly purchased blue) with me. She dyed a section in the back (on the bottom, so you can only see it when I have my hair up) blue. I know, I've lost my mind. I'm so conservative, it's totally outrageous for me to do this. But I have no career, so why not?

Well, as she washed my hair, she said, "so, that blue dye? Is green." I said, "you mean turquoise?" and she said, "no, I mean green."

And then I saw it. And it WAS green!!! Very green. Like Halloween green. Nice. Totally not the impression I want to give up here to all these people that don't know me.


So, last night Tom went back to the hotel and I stayed here. Then he got up and worked out, then came here. Then I left and ran 3.5 miles (I've run 3 out of 4 days since we've been here!) and went back to the hotel and dyed that green patch pink and now it's brown or maybe purple-ish, so the green is no more and you can barely see any color at all.

I've been having some technical problems lately. My computer's charging port is broken, so I can't use it to update my blog. So, I have to use the iPad, which is really hard to blog on. It doesn't view the blog right, so after a certain point, I can't see what I'm typing. It has been very frustrating. But Tom downloaded an app that makes it SO much better! YAY Tom!

Okay, I think this has been long enough. Please know that our spirits are good, all things considered and that all of your messages of love and support have helped us tremendously! We are so thankful to all of you!

And the boys have been having a great time with Tom's family in Pennsylvania. They've been to a water park, the great lakes in Erie, the children's museum and the zoo in Pittsburgh. So thank you Mary Ann, Kristie, Nathan, Tayne and Amanda!!!

Much love,

Christy xoxo

 

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Post-op Day 2

Here's how she looks today:

Overall, I still think she looks better than I expected for Day 2.  She has more swelling on the left side than the right.  And you can't tell from the photos but her left eye is quite swollen and she can barely open it.  Of course she won't look at me, or Tom.  She's obviously, and understandably, quite angry at us right now.

Which reminds me of something really stupid someone said to me once.  I hate to speak ill of a person.  Especially when I think most people are well intentioned. But this one was crazy to me. In reference to Harlie having a lot of hospitalizations, she said,"Well, at least you get some good bonding time."

Clearly this person has been blessed with healthy children and has never had to sit bedside, help hold a crying, scared child down while a person in a mask inflicts pain on said child.  Trust me when I say it is not "good bonding time" and it takes days to weeks before she will begin to forgive me and tell me she loves me again.  And while I understand, it still hurts. I know I'm doing the best I can for her but it comes at a high cost sometimes.

Anyway, this doggone BAHA surgical site keeps rearing it's ugly head.  Apparently the resident who saw her yesterday either asked someone to check behind him, or that's just part of the process.  Because an ENT (although they call themselves OLR, for otolaryngologist) came to visit her this am and look at her incision site.  Here's what it looks like:

That photo was taken on Wednesday, the day I tried to get her into the ENT because I thought it was pretty red. Did I even tell you that?  I can't remember. I ended up having to take her into the pediatrician's office for some heavy duty antibiotic shots just in case.  Her ENT was on vacation and the one covering for her couldn't get her in his schedule.  So my pediatrician called and spoke to him and said that he said that it being red is part of the healing process and that it is highly unusual to get infected.  So we have never got confirmation that it is or isn't infected.  

So this doc comes to take a look and she says it's probably not infected, but that fluid sitting in there for a long time is an infection risk.  So she wanted to tap it with a needle and drain it (that would confirm any/no infection).

They also needed to take out her arterial line and try to clean her mouth and face.  And they wanted to do this tap bedside in the ICU, with some sedation and pain control.  So, Tom and I discussed it. 

My feeling was that we should leave it alone.  There is no indication of infection and her ENT that did it said the swelling is normal and could take up to several months to go down.  And I know and trust her.  And the treatment wouldn't really change anyway.  She's already on several antibiotics that would cover it. 

However, we thought that being able to remove the arterial line and clean her up while she was somewhat sedated was a plus.  And then we could finally put the infection question to bed once and for all.  The doc said that she thought it was the right call and this is an excellent hospital, so we agreed.  

Fat lotta good that did!  That medication didn't touch her and she fought like crazy.  So they weren't able to remove her A-line, or clean her up.  And all they got out of it was blood.  So they sent that for cultures (but she's already on ABs, so I don't think they're going to get back anything useful).  Harlie was very traumatized, having been held down by four people, and she saw me stand there and let it all happen.  I tried to be strong for her, but I had to turn away when they put the needle to her head.  

She looks horrible, probably feels even worse, was scared, has no voice of her own, and I just wanted to go and pick her up and take her out of here.  Sometimes being her mom feels like the hardest job in the world.  

Here's what she looks like now...

After that she fell asleep and Tom and I went to get lunch. She is being moved to the floor today. Tom and I are hoping that this will be a positive change with less poking and proding and more room comfort for all of us. We'll see. While we were gone, they removed her A-line and apparently she is ready to go. But we're waiting on something. I guess that's it for now. I will update again when I can. Much love, -Christy xo

Post-op Day 1

When we walked into the unit on our way to see Harlie this morning, we met one of her surgeons who was leaving.  He said that she was feisty.  Her face might change, but her personality doesn't!  He also said that there was less swelling than he expected and that she was moving her lips really well.  So, he was happy with how she looks so far.

I think her eye looks really good!

And she certainly is feisty!  No matter what you're doing - even if you're not touching her - she is blocking and shaking her head, "no!"  And she's already lifting her leg.  Granted, she's trying to kick you with it, but still.

When she woke up last night she slowly lifted one hand and really studied what the heck was going on.  Then she lifted the other hand (both hands have IVs) and studied that one as well.  Then she lifted her leg and studied that.  I'd give anything to know what was going through her mind.

I do think she looks really good, all things considered.  Of course, I will take photos each day so you can see her progress, too.

Her mouth looks horrific.  And she flat out refuses to let us suction it, or clean it or touch it, or even look at it.  But, I'm sorry, I know she'll feel so much better without a mouth full of blood!  So, I have to suction it anyway.  She shakes her head back and forth and she's only going to make us hurt her.  If she would only stay still!  I keep waiting for the day when she realizes that it won't hurt (or will hurt a lot less) if she doesn't fight us.  When oh when will that day come???  I totally get that she's scared and is trying to protect herself.  But it kills me to have to hold her down for something that shouldn't really hurt.

She looks so much better when she's sleeping.  When she struggles to open her eyes, you can really see how swollen she is.  And she just looks so pitiful.  The other micro surgeon came in to see her this morning and he said that she looks like she went 15 rounds.  I love honesty and a good sense of humor!

They took her Foley out today, which is good (infection risk).  But is bad because now she has to go potty.  With so many lines (still has an arterial line, two IVs and drainage tubes in her face and leg) that will be a challenge.

She's needed a lot of suctioning today.  I love this hospital (it's very parent-friendly) but the nurses have been a little different when it comes to suctioning.  I learned (almost six years ago if you can believe that!) to suction on the way down and on the way up.  If you don't suction on the way down, you just push the secretions further down.  I've told every nurse - but they only suction on the way up.  So, that's frustrating.  I guess the problem is that the way you learn is the way you do it and it's hard to break the habit.  But, I am surprised that they even do it that way to begin with.  You can see immediately that not suctioning on the way down is a lot more uncomfortable for her. Ugh.

The team discussed moving her to the floor at some point.  I had to put the brakes on doing that any time soon.  They are crazy if they think she can go to the floor (she still has an arterial line!).  I voiced my concerns (at this point it had not even been 24 hours since surgery - slightly premature if you ask me!) and they agreed.  I know getting to the floor means "progress" but um, no.  Not yet, anyway.  I just hope they don't push her too hard.

The micro surgeon said that he hopes we can go home next Friday.  So, that's hopeful.  And he said we'll have to come back for a follow-up four to six weeks later.  They will do some more imaging (CT scan) to see if the bone adhered.

An ENT resident came to look at her BAHA surgical site.  The surgeons looked at it in the OR yesterday and agreed that it was really red and looked like it might be infected.  She's on several antibiotics now, so we're covered either way.  But, they asked ENT to come take a peek.  Except that the ENT resident has NEVER seen one post-op.  So, that was helpful.  Not.  Although when we looked at it, I could clearly see that it wasn't as red as it was the other day.  He said it didn't look infected to him.  So, I guess we'll drop it and leave it alone for a while.  He asked when we'll see our ENT at home again and I said I don't know.  Then I thought about having to take her and how much she'll fight at every single doctor's appointment from here on out for a while.  It's like we're starting over again.  :-(

I think that's it for today.  Thank you for all your wonderful support!  I'll post again tomorrow.
~Christy xo

Post-op and surgical update from surgeons

It is now Saturday morning and overall, Harlie is doing well.  She looks better than I expected, so that's a pleasant surprise.

I'm having a hard time organizing my thoughts....  let me just go back to last night.  We were able to see her around 7ish last night.  Before that the surgeons came to talk to us about how the surgery went.  I wish I could have written this last night, when all the information was fresh and clear.  But, I was way too tired to do that.

Here's what I remember:

She did well through the surgery (heart and lung-wise).

Her jaw was not stable the way it was.  The previous bone graft on her right side was only connected to her own bone by scar tissue.  Her oral surgeon said that they had to just remove it and start over.

They ended up having to make an incision from one side of her jaw to the other.  The left side of her jaw had something that was preventing them from aligning her jaw - I can't remember - but it was like scar tissue or ligaments or something.  Step one in the surgery was for the oral surgeon to line her teeth up in the desired position - then they put the bone graft in the voided space.  But, when the oral surgeon went to align her teeth, her jaw just didn't move they way they needed to.  So, that's why they had to make a larger incision than planned.

The micro surgeon was going to revise her scar on the right side from the previous bone graft (it was pretty rough) but he said that they pulled her jaw out so far that her skin is really stretched - so there wasn't enough skin available to do it now.  She will have to have several more surgeries - so it's not a big deal.  There will be plenty of opportunities in the future (way to be positive, right?!).

They used screws to attach the bone graft.  Her oral surgeon said that they often end up poking out after a while (that happened after both of her previous grafts).  So, that might happen again and can be fixed during another surgery.

Her micro surgeon said that they didn't really attach the bone at the joint.  They want that to move so she can open her mouth.  Basically they had to create a new TMJ (temporomandibular joint).  And a risk is that the bone will grow over and prevent her jaw from opening.  So, they will want her to open her mouth often to keep everything moving.

Since her skin was pulled so far forward, he said that she would probably have a hard time getting her lips together.

Her teeth were a mess - as in the way they were trying to grow.  She had so little bone that they were coming in in all directions.  The left bottom teeth are growing to the left instead of to the top like normal.  I think he said the bottom teeth on the right are growing to the right side instead of the top.  And there was a tooth in the bottom front that was growing sideways as well.  So, they removed that one.  He said that this surgery should help give the orthodontist a base on which to work in the future.  I think she'll be lucky if she has any of her own teeth when she gets older.

We have no idea when we're going to know if this surgery was a success as far as decannulation goes (being able to get the trach out).  While that was our ultimate goal, it sounds like all of this was necessary regardless and that decannulation will be a bonus, really.  It's just way too early to tell and there's a lot of healing that needs to happen - and time that needs to pass - before we can see any results.  But there's a lot of hope in all of us - and we are choosing to continue to think positively.

Her left eye closure went well.  I'm anxious to see how she's going to look after all the swelling goes down.  I suppose that goes without saying, huh?

Her leg graft went fine.  She's in a hard splint now.  But she will be casted in a few days and will remain in a cast for a few weeks.  It will be up to her to tell us when she's ready to weight bear and start walking again.

That's all I can remember for now.  I am having a hard time trying NOT to worry about her future when it comes to her jaw and how it's going to function and look in the long term.  It just sounds like it was/is a mess.  Will she ever be able to eat a chocolate chip cookie?  Not that oral eating is everything in life - but it just makes me sad to think of a life without it.

After they got her settled, we were allowed to see her.

Immediately post-op.

How cute is her little leg in a splint?
It will be casted in few days.

Lots of suctioning post-op.
I had to help the nurse because she was already pretty feisty.

Overall, I think she looks pretty good.  But no matter what - it is very difficult to see your child's face change like that.  And it's difficult to wait through the swelling and healing to see her again.  Once I see her laughing again, my worries of the future will go to the back of my mind and her current happiness will keep me in the present.

After she was settled in for the night, Tom and I left the hospital and walked the mile back towards the hotel.  We were so freaking tired!!!  It was such a long day and it didn't hit me until I could relax a little.  We stopped to eat a late dinner at a Thai place right around the corner from the hotel.

Yesterday Harlie received a package from the Life is Good corporate office (which is based here).  Thanks to Lynda Reider (aka We Heart Harlie on FB) they were made aware of Harlie's surgery and they sent over an awesome care package for her.

There's a backpack, t-shirt, hoodie, coloring book, socks and a stuffed dog.  The most touching was the fact that the employees signed the card with sweet messages of strength and good vibes.  Seriously???  How awesome is that?!!

I have always loved Life is Good and the message of optimism... this is my Life is Good hat from my last trip here...

Powered by Optimism

But now I love them even MORE!

And I just can't begin to thank you for all your comments, prayers, messages, texts, and pictures of We Heart Harlie support.  It has been so overwhelming to see and feel the love!!  Thank you!!!

I have a ton more to write, but will get this done for now.  I'll work on what's going on today, and provide new pics in a little bit.  But, at least this will get you some info until I can finish the next update.

More soon!
~Christy xoxo

Surgical update

It's 1:30pm.  Just got our third surgical update:  they've harvested the bone from her leg and they are getting ready to make the transfer to her jaw. She's doing well.

She had a great time traveling yesterday.  She loves the plane.  She's not much of a listener though (I guess we all have our faults) so it's a bit of a struggle to keep her in the seatbelt when she's supposed to be buckled in.

She always has fun running around a hotel room and jumping on the bed, of course. The hotel is awesome (thank you to John and Jackie Hudson for treating us so well)!  And it has so many great places all around it.  For some reason she loves to go around and turn on every light, then goes back and turns them all off.  Unfortunately this is more annoying than cute. And neither one of us wanted to yell at her.  And it hurt us both to see her innocent smile knowing she didn't really have a clue as to what was about to happen.

We decided to tell her when we woke her up.  I don't know if that's a good call or not, but it seemed unnecessary to have her go to sleep with that on her mind.  I woke up at 3am. I had to give her water through her g-tube before the cutoff time (4am). But I guess I was afraid I would miss it or something. So I gave her the water then, thinking that I could go back to sleep. But that didn't happen.

Anyway, we told her and she said "no" through tears. I think it's safe to say that we (Tom and I) both had to fight to keep from crying ourselves! It was that sad cry that says "there's no use fighting, because I'm not getting out of it." ugh. And what do I say?  If I say they are going to try to fix your mouth, will she think that something is wrong with it? Of course there is, but I don't think I want to call attention to it if she doesn't know. 

Anyway, I said that she might not be able to open her mouth when she wakes up, but it won't stay like that for long.  And some other stuff. I don't even know if she was listening. Don't think I'd blame her if she wasn't. 

We walked to the hospital and she seemed to enjoy that.  She found a little toy cow in the waiting room and her and Tom played hide and seek with that for a little while. Then a little boy (2 years old maybe?) came to play at our table and Harlie gave him the cow.  It was so cute.  And surprising considering she was still playing with it. Made me wonder if she knew what was in his future and wanted to be extra nice. 

She was fine until we went back to the pre-op area where the beds are separated by curtains.  That's when she started to cry and hid her face in Tom's chest.  She didn't show her face until the Versed started to work.  Then we had to lay her on the bed and say good-bye.  Usually I'm fine and I can't remember the last time I cried when I had to do that.  It's been years and years. Heck, I've had to do it more than 30 times!  But, her resigned cry got to me today. I couldn't help it.  And I hate to cry - especially in front of strangers!  I signed "I love you" and she just looked at me and cried, and didn't sign it back. Not that I'm surprised or that I blame her, but it didn't help matters. 

One of the surgeons told us that they would take good care of her.  I thought that was nice. 

Then I went and put my running shorts on and headed out for a 5-mile run. It felt awesome. It was - by far - my best run in months and months.  I ran part of the Emerald Necklace and it was awesome.  Then I went back to the hospital and had breakfast with Tom.  Then we went back to the hotel to let me shower.  Getting ready to go back to hospital was a challenge.  I just felt that I looked... bad.  My hair didn't look good (there's more to that story, but I'll have to tell you later).  My clothes didn't look right.  I was just "off".  Grrr!

Then we took the long way back to the hospital (we needed to get me a pair of cheap sunglasses and Tom a backpack so we could share the load of stuff we're carrying around.  

The weather is beautiful and it is awesome to be able to get out - it has made the day WAY more bearable than I expected.  And the staff is great and they encouraged us to get out.  They have been calling us every 90 minutes to give us an update.  When we were in the waiting area earlier, there was a mom who was tapping her foot - out of nervousness I'm guessing.  And while I understand that, I just don't think that's very mentally healthy.  At least not for me. Or Tom.  

So, I'm sitting in the garden now writing this and it is awesome.  Well, the time has to pass either way, might as well be in a beautiful environment, right?

Well, I'm going to sign off for now.  I want you all to know how much we love having your love and support through this.  I haven't been able to get on Facebook in a while, but Tom told me that people are posting pictures of twearing We Heart Harlie shirts and writing it in the sand.  We are so blessed to have you all in our lives. We really couldn't live this life without you.  So, thank you!  

Much love!
Christy xoxo

.  

Surgery on Friday!

I can't believe it's been so long since I last blogged.  Time seems to be flying by.  We've been busy.    Somehow every day has filled up with stuff - and not necessarily fun stuff, either.  I really wanted to be able to relax a little and just enjoy some time with the kids.  After all, for us there is only a few more days of summer.  In fact, the boys leave to go and stay with Grandma (Tom's mom) on Wednesday!

We did manage to get in some fun... on Friday, me, Terri (our nurse) and Maggie (my niece) took the kids bowling.  Thanks for the great suggestion Bethany!

One thing I've really been struggling with this summer is handling germ exposure to Harlie.  Do I put her in a bubble and not let her do much or do I let her have fun?  It's something that goes through my mind constantly.

To get serious for a second (not usually something I like to do) after our experience with her cardiac arrest in the OR two years ago, I can't help but be fearful that something really bad could happen.  I've linked back to that post so many times.  I'm sick of hearing about it myself!  And I keep thinking, Geez! Get over it, Christy!  It was two years ago for crying out loud!

But, I suppose almost losing your child sticks with you for a while.  I can remember each episode that could have gone the other way (and yes, there's been several!), like it happened yesterday.  Especially when she's scheduled for a 10+ hour surgery.  That's a looooong time and a lot can happen in that time frame.  Not to mention the balancing act for the first 24 hours after coming out of the OR.  In the OR they will load her up with fluids and then the next day the challenge will be getting that fluid out of her.  Not to mention pain management (that's been scary in the past, too!). So, yes, I am terrified.  And can't help but think, What if the worst happens?  And I made her live in a bubble and didn't let her have any fun?  Those are some crummy thoughts to have stuck in your head.

So, I took them bowling.  They LOVED it.  The last time we went bowling was when Murphy turned five - it was his first birthday party out of the house.  That was three years ago!  Well, Harlie remembered exactly what to do.  She carried the six pound ball to the line, gently placed it on the ground and then pushed it with both hands down the alley.  All by herself.  And then she would turn around to walk back and smile proudly.  It was really cute.

Cooper would roll the ball down and then run to the ball return and hold his hands right there ready to catch it.  But the ball would still be rolling towards the pins.  I laughed every time.  He cracks me up.  Everyone had fun and I will have to remember to take them more often than once every three years.

So, yes, the big surgery is Friday.  This Friday.  Holy cow!  The past few days she has been pretty junky.  Last week when I took her to her ENT follow-up appointment we discussed that her secretions were really sticky.  So, her ENT said to increase her water flushes by a fair amount (like 10 ounces per day).  That would mean she should get 35 to 40 ounces of water per day, which seems like a lot to me.  She only weighs 37 pounds and I know for a fact that my boys don't drink that much water - or even close.  But, we did it.  And I really think it was too much for her.  I think she may be a little fluid sensitive.  My guess is her lungs just can't process that much fluid.  Her secretions were no longer sticky - but now they were more than plentiful!  Ugh.  I'm not sure which is worse!  For several nights we had to get up to suction her like 20 freaking times.  Which is pure torture in my opinion.  I would just lay down and fall asleep and I'd have to jump up and run in there to suction.  Then go back to bed, just fall asleep and it would happen again.  And again.  It was awful.  I increased her breathing treatments and the past few nights have been better.  But, I'm still holding my breath and hoping and praying that she doesn't get worse.

So the plan now is that Tom will drive the boys to meet his mom halfway to Pittsburgh on Wednesday.  They will stay with her from Wednesday to the next Friday.  They are going to visit their aunts and cousins who they don't get to see very often, so they will have a lot of fun. Then she will drive them home and stay with them here until we get back.

We leave on Thursday.  We bought one way plane tickets since we don't know when we'll be coming home.  Tom is busy working on the Ronald McDonald House renovation and he said if he can get that project to a certain stage before Thursday, then he should be able to stay in Boston the whole time.  I really, really hope that happens.  He has not taken off that many consecutive days off from work in years and years.  In fact, the last time we had a vacation I was pregnant with Cooper (that was the summer of 2008) and even then he would drive to work for several hours some of the days.

Rooney is going to stay with Brandy while we are gone.  Ugh.  This little trip is going to be tough on all of us for so many different reasons.  I'm worried about Cooper being gone for so long.  He's never done that before.  And this morning I went and did my Adrenaline class for an hour and when I got home he said, "Mommy!  I missed you!" and hugged me.  I'm thinking nine days might be a little rough on him.

So, this is what's going on this week:

We have a meeting tonight about a potential 5k run to benefit Harlie.  I will provide more details tomorrow.
I have a meeting today with the teacher that put together Harlie's "My Name is Harlie" book for school.  We are making another, up-to-date one this year.
I'm getting my hair cut tomorrow. Woohoo!
Then Harlie has a daisy girl scout pool party at our pool (the boys will go, too).
I'll pack the boys up and send them off Wednesday morning :-(
Harlie has a kindergarten screening appointment that morning with her new teacher (I'm very excited about our new set-up this year).
Then it's date night for Tom and I.  We're going to see the band Train with some friends.  I've been so looking forward to that!  It's kind of become a "tradition" for lack of a better word to go out with friends before a big surgery.  It's good to get our minds off it and to laugh and have fun with friends before the seriousness of surgery.
Then we pack up on Thursday and off we go.
Surgery is at 7:30am on Friday and we have to have her there at 6am.

We are staying at a hotel about three blocks from the hospital (not the same place we stayed last time, thank goodness!).  And that is courtesy of our wonderful, kind and generous neighbors - John and Jackie Hudson.  They are taking care of our hotel costs for the week.  We are very lucky people for sure!  Thank you so much John and Jackie!

And just to summarize what surgery this is (I've had a few people ask), here it is in brief:

It is called Fibula Free Flap Mandibular Reconstruction.  They are taking a good portion of her fibula (apparently an unnecessary bone in between your knee and ankle) and the vascular tissue around it and implanting it into her jaw on the right side.

She's already had two jaw reconstructions - but they used her cranial bone - and with no vascular tissue.  They were unsuccessful.

This is completely different and has a better chance of working because of the vascular tissue.  They are going to connect the blood vessels in the graft (what's taken from her leg) to the blood vessels in her jaw.  The hope is that the bone will have a nutrition source, and thus, will grow and heal.

They are also going to fix her left eye.

We are unsure if they are going to wire her jaw shut or not.  And we are unsure if she's going to be in a cast due to the harvest of her fibula.  Interesting note - when they take her fibula, they are not replacing it with anything.  So her bone will come down from her knee and just end.  And then her bone will come up from her ankle and just end.  And nothing will be in between.  Crazy, huh?

Okay, that's all I have time for now.  More later!  Thank you for caring about us!
~Christy xoxo

My Day

For some reason, I'm feeling really stressed today.

I recently decided to train for the half marathon in Richmond in November.  This summer has been really hard on my running.  I've spent the last three summers training for a half, and then two full marathons (although I switched to the half for the last one at the last second).  At any rate, for three summers in a row I had a purpose and a goal for my running.  Not having the time for that this summer has, well, sucked.

So, I decided to put the training on my calendar and see if I could make it work.  It's hard.  There are hundreds of other things I "should" be doing, yet I try to cram in a run whenever I can.  It's humid out.  Really, really humid.  And that is no fun to run in.  Especially by yourself.  When I was training the past three summers, it was with a group.  So, even though it was hot and sticky, it was just better when you threw in some socializing.  If I'm tired afterwards, my children don't care.  So, I have to keep going, even when I'm dying to just sit for a second.

Anyway, so I ran 4.5 miles today.  It was really yucky out.  I don't exactly get a lot of choices of times to run, and today it had to be done at 10am.  Not ideal.

After that I drank a shake, cooled down, took a shower and ran to go pick up Cooper from preschool camp.  I had to be out of the house, with Harlie by 12:30 to get her to her baha surgical follow-up appointment.  So, between the times of 12:00-12:30 I had to do the following:  pick up Cooper, make and feed Cooper his lunch, feed Rooney and take him out for a walk and make my own lunch.  My Mom came over to watch Cooper for me while I was gone.  Murphy was at Summer Blast till 2:30.  I knew I wouldn't make it to pick him up, so Tom had to go and get him and bring him home to my Mom.

In the process of making Cooper a hot dog and myself a peanut butter and jelly sandwich (only the best for us) I forgot to feed Rooney.  But I remembered to walk him, weird.  Anyway, I ran out with Harlie and my sandwich to rush off to our appointment.

I got there at 1:00 and signed in.  We sat there for an hour.  Not really unusual as far as appointments go.  But what kills me is what I had to do to get there by 1pm.  And for what????  I could have fed Rooney and walked him and not drove like a bat-outta-hell if I had to be there at 2. Grrrr.

Then at 2pm Harlie signs "potty."  For the second time in that hour.  We go into the restroom, which is out of the ENT's office and down the hall.  I would have told someone we were going, but no one was at the window at the time.  Anyway, someone had obviously thrown a dirty diaper in the trash in there.  So, that was a bonus.  Especially considering we spent 48 minutes in there.  FORTY-EIGHT MINUTES, FOLKS!!!

I wanted to come out of my skin.  Harlie was struggling.  And I felt bad for her - no doubt.  But honestly, I felt worse for ME!  I was so stressed.  I knew by then they had called our name and that our appointment time was long gone, filled by others.  And there was NOTHING I could do to help her.  It was awful.  I tried to distract myself by playing solitaire on my phone.  Do you know how many games you can play in 48 minutes?  Oh, and in that time do you know how many people tried the door, felt that it was locked, and STILL knocked?

I'm sorry, but yes, it is STILL occupied and I'm not happy about it, either!  One time I had to actually open the door - they knocked repeatedly and clearly weren't going away.  It was three small children.  And I had to tell them to get lost.  Okay, I was way nicer than that.  Although it was difficult to switch my attitude from completely annoyed at the knocker to nice when I found three small children, one of which was probably in the middle of potty training.  Poor kids.

Tom called while we were in there and I asked him if he gave her Miralax last night.  It's been determined that she has to have a daily dose of it.  Or this happens.  He says, no, he did not.  He thought I had switched the dose to the morning time.  Which I did a few weeks ago because of her antibiotics, but I had switched it back to nighttime again, and could have sworn I told him.  So, that means that she hasn't gotten it in a few nights.  At least.  OMG.  He also wanted to tell me about his lunch that was so good.  Some kind of really awesome salad.  From a restaurant.  Where he sat down in a chair and ate it.  Sorry, Tom, but I had a PB&J while I was driving, and I'm standing in a stinky hot bathroom, so now's not a good time to telling me about your delicious salad.

You'd think after five years we'd have stuff like this all figured out.  But, it's just not that easy.  And by the end of the night, we are both tired.  Which is why I make Tom do the night meds.  I hate doing her night meds.  With a passion.

Anyway, I'm sorry as I can be, but couldn't take it anymore.  I pulled her off the potty.  I mean, we could NOT sit in there all freaking day.  We returned to the waiting room to find a whole new set of patients waiting.  I suppose that happens in an hour's time.

I peeked through the glass in the door to see Ann, our audiologist.  I knocked on the window and when she saw me she said, "Oh, there you are! Where have you been?"  I told her I was trapped in a hot and smelly restroom, but I'm pretty sure that was obvious.  I suppose the one saving grace is that I could blame this all on my lovely, sweet daughter versus me.

They took us back within a few minutes.  And then the torture began.  It wasn't really that bad.  The doctor just had to clean the incision really good - since I clearly haven't been.  There is a really big scab on it.  And she said that the scab is covering the sutures and will slow down the healing process.  So, we need to gently try to remove it.  She covered it in some ointment and said we need to try to ease it off after soaking it in ointment for a while.

It took me bear hugging her and a nurse holding her legs and the doctor holding her head to get this accomplished.  Tom and I have been trying our best, but it's really hard for us to do this "activity" with her.

Then we left.  It was 3:20pm.  And I was hungry again.  The PB&J just didn't cut it.  And when I'm hungry, I get a little agitated.

So, I'm driving on a road that is two lanes.  Speed limit is 45.  And you know when there's a slow car in both lanes and they are spaced perfectly apart so that no one can get past either?  Yeah, so that happened.  I wished I was in a monster truck so I could run that poor woman over!  GRRRR!!!  They were both going 40.  Patience.  I have a lot of patience, right?

So, I get home.  Home sweet home.  With whining, fighting children and a TV and computer going at the same time.  So, I took Rooney for a walk.  I always get in a better mood when I take him for a walk.  It's really quite amazing.

We get about four/five houses down the block when somehow Rooney goes face first into a glob of melted gum.  Awesome.

So I had to try to get it off his face - with my bare hands.  Awesome-er.  So much for that walk!

That is at least the fourth run-in we've had with gum while walking Rooney.  The other times we just had to fish it out of his mouth.  Who knew there was so much gum laying around?  I guess that comes with living in a neighborhood full of children.

Tom called on his way home and said he is going to make a super delicious dinner for me and we are going to eat it after the kids are in bed.  And we are going to drink wine with it.  It's an impromptu in-house date night.  I already feel better.  And maybe I won't be mad at him anymore. Since our 48-minute bathroom stay was mostly his fault.  ;-)

So, that was my day.  So far.  It's only 6:30.

More later!
~Christy