Exciting News!

Harlie's communication device arrived today!!! I am SO excited!!! And so is Harlie!













She really went crazy over it. It was so great to see her so excited. And its great to be able to post some pictures of her smiling again!



Now we just have to learn to use it. Tom figured out how to change some things in just a few minutes. We recorded a "My name is Harlie" button, which is way cool. I can't wait to see her learn how to use that. And a "I am 3 years old" button. We added a button for Murphy and Cooper. Murphy got a big kick out of that. There is so much more customizing to do. But we'll have to work on it when we can concentrate. Harlie's speech therapist knows this device really well, so she will help me, too. We'll have to learn how to incorporate it into our routine. I worry about that a little. I hope this device is pretty tough. She doesn't understand to be careful. And how do I let her use it without getting her drool all over it? Ugh.

The other exciting thing is that tonight she got her LAST dose of her antibiotic! YAY! Hopefully now her hives can go away for good.

Take care!
~Christy

Merry Christmas!

I just want to say Merry Christmas to you all. Not that you should be reading my blog on Christmas - but just in case. I will admit that this Christmas season has not been my favorite. I might even say that it was one of the hardest.

I try to think back to our first Christmas with her. That was a hard time, too. We only had a nurse for a couple of weeks - and she was TERRIBLE!!!! I made myself leave Harlie with that woman so I could get some shopping done, and then regretted it when I got home. That "nurse" did not feed my teeny tiny little baby the whole time I was gone. Ugh. That was the end of that nurse. Luckily, one of the nurses who worked at Harlie's pediatrician's office felt sorry for us and started to work some nights for us so we could sleep. At that time Harlie's "room" was the living room and we were sleeping on the couch. We were so happy to have Dawn come to help us. What a difference it makes when you can actually sleep at night! But it took us two more months before we found Brandy to help us during the day. We are so lucky to have such great nurses.

My struggle with Christmas is not being able to focus. Harlie has kept me so distracted. And I've been struggling with all the emotions that her surgery has brought. Not just mine, but with everyone else's feelings, too. I hate that I couldn't dive into Christmas and all the excitement that it brings. But today is a good day. The kids had a great time opening gifts. And they are very busy playing with their new toys. It is so wonderful to see Harlie feeling so much better. She looks like she is really enjoying herself today. That is the best gift ever. They are happy and so are we.

As crazy as this month has been, a lot of wonderful people reached out to us and brought us meals. I know that they don't all read my blog, but just in case...

Thank you to Cindy R., Mary Sue M., Cheryl, Bethany G., Sarah G., Donna and Mia W. for all the wonderful food! I have a funny story about that, but will have to write about it later.

And thank you to Natalie F. for coming to visit us in the hospital.

And a very special thank you goes to the Heart Institute at Children's National Medical Center for their Holiday Cheer program. What a great group of people. I feel so lucky that we ended up in their care. And they have the best social workers - EVER. Thanks Kristen and Heather for all you do!

And thank you to all of you who read my blog. Without your support, I'd be a crumpled mess by now!

Merry Christmas Everyone!
Much love,
Christy

She's Getting Better!

It looks like Harlie has turned a corner. A good corner. YAY!

She's been up a lot more - playing. So good to see! Murphy was making her laugh on Monday and he was having a great time interacting with her again. She is smiling again. Which makes all of us smile.

Her incisions are finally starting to look good. But the hives are still hanging around. It starts to look like they're on the way out - and then they flare up again.

She hates her feeding tube. She was on bolus feeds (which are similar to a "meal" in that it is given in a short period of time). But, in order to reduce the chances of her vomiting (which could be very bad with her jaw wired shut) we had to go to continuous feedings (lesser volume in her belly). At first we fed her 24 hours a day. She was in the hospital and not up and about, so she didn't care. But it didn't take us very long to figure out that she does not like to be hooked up all day. She would not get up and play if she was being fed. So, we had to change it up. Over a few days, we've gotten her down to two hour feedings, two hours off, etc. And then she gets fed for 10 hours at night.

She used to wear her feeding backpack without any trouble or complaint. But that was a year ago. I suppose she's forgotten. So, I had to force her to put on the backpack. She sat on the kitchen floor for over 15 minutes crying and pointing to her tube signing "off." It broke my heart! I so hate being a mean mommy!!! But she has to figure out that she CAN walk around while being fed! It's in her best interest!!! She just doesn't understand. So, tonight we put the backpack on her again (and her nurses have been trying during the day, too) and she just took it off, pointed to her tube and signed "off." Well, she was just going to have to sit on the couch then. Within a few minutes of Tom and I playing in the living room with Murphy and Cooper, she picked up the backpack and carried it to Tom for him to put it on her. He put it on and she joined us playing like no big deal. Oh boy is that girl stubborn! But, we are so happy that she finally got over the hump and will now wear it again.

I think we're going to have to get her out of the house pretty soon. She's got to be tired of being stuck in the house. But, I have to admit that I'm a little nervous about exposing her to the rest of the world - the world that doesn't know why she looks the way she does and all that she's been through. Not to mention the germs! But the first step is always the hardest, right?

Well, I have a lot more to write about, but I'll have to save it for tomorrow.

Thanks!
~Christy

Hives.

Boy have I been in a funk! But, as I've noticed before, my feelings seem to mirror Harlie's. And I think she's feeling pretty crappy.

On Friday morning she woke up with hives! Ugh.





So, I gave her Benadryl and hoped that the hives would quickly go away. We were thinking that maybe it was the Tylenol with Codeine, since she hasn't had that much and her last dose was given at 1:50am. Which is a real bummer, because that's her pain med. It couldn't be her antibiotic (Keflex), she's been on that since Monday. And she's had it before with no reactions.

At noon, Brandy gave her the antibiotic. At 1:30, she was worse than before. I went and got the report from the night nurse and read, "She awakened crying, and scratching at right ear, and right side of face, and neck, administered Tylenol with Codeine." The Tylenol was given at 1:50am. She had a reaction before the Codeine. Her antibiotic was given at 12am and at 6am. So, that means that she had a reaction to the antibiotic - not the codeine.

So, I took her to the pediatrician. I've never seen hives before, and I just wanted to make sure that we were right - plus - we needed a new prescription for the antibiotic. I wasn't really ready to take her out in public. But she clearly wanted to get out of the house. She signed "let's go" eagerly. When I called her ped they told me just to bring her in whenever I could. When I got there the waiting room was fairly full. It was not fun to carry her through there. Those parents have no idea what's happened to my little girl. I'm sure that she is quite the sight to uneducated eyes. I didn't look at anyone. Luckily, they called us back immediately. The nurse told me that they held a room open for her. How thoughtful!!!

Harlie was not her cooperative self. She wouldn't let the nurse take her temp. She wouldn't let the doctor touch her at all. The only thing she let her do was listen to her heart/lungs. And that was only after the doctor pointed to her stethoscope. I hope that Harlie will trust again. But, I guess it will take some time. And comforting? She doesn't want any. I know that she's had to find ways to cope with her life. But, I just can't help but wonder what kind of personality traits are developing.

Anyway, her doctor didn't really like the look of the incisions under her jaw. So, she can't go off the antibiotic completely. So, she had to prescribe something else (Omnicef). But, it is still in the same category as the one that caused the hives. So, it is possible that the new antibiotic will still cause hives. Even though she's had it before with no reaction. Ugh. My poor sweet girl.

After our trip to the doc and another dose of Benadryl...



This is how she looked this morning (Saturday). Looks promising, right?



I wish. Here's how she looked when we were getting her ready for bed. When I gave her a bath last night, I was thinking that she did not look like a 3 year old. Her body, I mean. Nothing about her body looks like a toddler. She is too thin, too scarred, too grey, too bruised. It kills me.





The bruising you see is from them trying to get a femoral line. I keep telling them that they are done - please don't try. Yet they try anyway and they are never successful and she comes out of the OR bruised all over.



I miss my Harlie. My happy girl. The light is missing from her eyes. She's miserable. And it shows. This recovery is so much harder than it was last time. Honestly, this recovery is the hardest so far. She's always bounced back faster than this. I can't help but wonder if it is because she's getting older, more aware. Or is it that her body is having a harder time, too? I don't even want to think about that. She has smiled a few times. And she's gotten up and walked around a bit. If we could get rid of these hives, I think she would feel so much better.

I was thrilled on Thursday, when I was putting her in bed. She signed "I love you" to me FIRST. I signed "thank you" and "Mommy is so happy." I can't tell you how great that felt. Of course, she hasn't said it since. I keep on telling her, but she just ignores me - or pushes me away. Ahhh, being her mom is so freaking hard!

On a fun note, it snowed here. Like NEVER before!



Murphy was a little excited.









The neighbor's dog...



Murphy trying to walk in it...





And while trying to get everyone in bed, Cooper went into the bathroom while Murphy's bath water was draining. I saw him go in, and ran in there after him. Clearly, I wasn't fast enough. But, in my defense, that little guy is very quick!







He is so Tom! And we so need him! He is such a joy!

Thanks for reading. More later!
~Christy

Post-Op Day 6

Harlie had an okay day. But she sat on the couch the entire day. I'm not going to push her. I think when she's weaned off the oxygen during the day again, she'll start to want to move around. I think when she's hooked up to oxygen she thinks she can't walk around. We weaned her from 4 liters to 2 liters and then in the late afternoon, I was able to take her off completely for a few hours. She was hooked up to the pulse ox all day so we could see what was going on with her numbers.

She doesn't like that she is drooling. A lot. And that's an understatement. It literally is a constant drip. She can't seem to move her lips yet, so that doesn't help. And if I jet my chin out and try to put my bottom teeth over my top - it is extremely difficult to swallow. So, I'm thinking she's not doing much of that. So, we've had to pull the bibs out again. But she is still soaked within minutes. Even staying on top of changing the bibs, we still had to change her shirt five times today.

Here's how she looks...



I don't know what's up with the right side of her chin being so much bigger than the left. Guess I'll find out when we go to get the wires taken out - in 8 weeks!

She finally interacted with me a little today (I'll take anything at this point). I gave her the movie book and she actually sat up and picked out a movie to watch. Then she patted the cushion next her, inviting me to sit down. Awww! She just might be coming around!

Murphy had a difficult time with her today. He was playing in the playroom and me, Harlie and Cooper were watching a movie together. I told him he could bring what he was playing with into the living room so he could be with us. He said, "No thanks." I asked him why. He said, "Because I don't want to see Harlie today".

I certainly don't want to push him, but I don't want this to last any longer than it has to. It's painful for all of us. He eventually came around and played in the same room. But, didn't play with her, or interact with her. She doesn't appear to care. When Tom got home we talked to Murphy about it. Even though we've talked a lot about it, before her surgery and after, he just needs some time to get used to her. I think her eyes are starting to look more like her already. By the time we were done talking, he signed "I love you" to her. Of course she ignored him - as she has with me the 10,000 times I've told her since her surgery. Then he went and drew her this picture.



It is Murphy, Harlie and Curious George. It was pretty cute because she took the picture from him, clearly studied it, and then handed it right back over - with no expression change whatsoever. Granted, right now, I don't think she can change her expression. But it was still pretty funny.

I love that they are holding hands. I am amazed at how detailed his drawings are getting. They have improved so much in such a short period of time.

Well, that's it for now. I'll have more later.
Thanks,
Christy

We are Home!

Everything went as planned yesterday, and Harlie is home safe and sound. I was expecting an immediate attitude change, but have yet to see it. She is still very mad. And refuses to communicate in any way with me. Tom says she's mad at him too, but I definitely feel the brunt of it. I will do what I always do and wish the minutes/days/weeks away until she is herself again and all is well.

I know that she's not just mad. She's uncomfortable. Those incisions under her jaw look so painful. She's much more aware of what's going on this time around. I mean, she is three after all. She knows she can't open her mouth and I'm sure that's awful for her. And she doesn't understand why this happened. I wish things could be different. I wish she could hear just fine so I could have explained some of this to her.

Well, Cooper was very happy to see us. Of course he didn't seem to notice a change in Harlie. She was sitting on the couch watching TV and he kept on trying to put her feet in his mouth. I have no idea what that was all about. He also wanted to play with her oxygen tubing, pulse ox machine and feeding pump. And she's pretty protective of her "stuff" so that was annoying her. But she did reach out at one point and rub the top of his head. I suppose that was her way of saying hello.

Murphy got home from school shortly after we got home. He said that she doesn't look like Harlie. And while we all think she looks pretty good, all things considered, all he knows is that she doesn't look like herself. And that is certainly true. He said he was scared, and that wasn't surprising to hear. We just told him that it's okay to be scared right now, but that she is still just Harlie and soon she will feel like playing again, and then eventually, she will look like herself again.

Brandy came over and sat with her for a few hours. I think it was good for Harlie to see some other people for a change. Cooper was also so excited to see Brandy again, too! Sometimes I think we are one big weird family. But I am so very thankful that our nurses are like family. I think it makes our weird life a little more tolerable for my kids (and for us).

So, Brandy and I gave Harlie her first real bath in a week. While she didn't look like she enjoyed it, I know she HAD to have felt so much better. We washed her hair. Brandy tackled her hair for me while I searched for the detangler. I never found it and when I went back to the bathroom, it was all combed out already. Harlie didn't seem to mind. But, I will say that she lets us comb it and put it up in all kinds of ways, with no complaint, so I wasn't that surprised. Now what we are going to do with it today, I cannot say. We'll just have to see how it looks when she wakes up.

This is kinda gross, but we had to wash her hair twice. So much dried blood came out of it that it turned the tub water completely pink/red. Ew! So, we had to give her new water and do it all over again. Her head incision looks great. They didn't shave her head down to her scalp (I'm guessing that is to reduce the itching of the new hair growing through the incision. They just clipped it really short. So, it is kinda hard to put Bacitracin on it, but I think it will be better in the long run.

The trach tie change went pretty well. The incisions under her jaw are pretty raw still. But she let me put some peroxide on them, and then Bacitracin (which I am supposed to do several times per day for several more days) without complaint. She really is a tough cookie. It amazes me what this girl can handle - with NO pain medication. And NO tears. CRAZY!

Well, I think so far, craniofacial surgery is the worst. On all of us. When nurses are taking care of your child and they ask you to see a picture so they can see what she looks like, well that's just weird for a mom. Tom went and printed out an 8 x 10 photo of her to put at her bedside so people could see the real her.





What a difference.

Well, everyone's up now, so I gotta go. More later!

Thanks,
Christy

Post-Op Day 5

It looks like they are letting her go home today! She's still breathing a bit faster than I would like. But, they aren't doing anything for her here that I can't do for her at home. Plus, the longer she's here the more likely it is that she'll catch something from another patient. And I know that she always heals so much faster and better at home. So, all good reasons to get her outta here!

So, one of Harlie's nurses (Jennifer) is on her way down here with our car to come and get us. Tom had to leave yesterday morning because he had to get back to work.

They are getting all the paperwork ready so that when she gets here we can leave. Harlie is going to be so happy when she realizes were going home! I can't wait to be able to get her dressed. Although I am not looking forward to putting a shirt over her head. I got the stretchiest shirt I could find.

Here's how she looks today.





The incisions under her jaw look horrific. Trach care is going to be painful - for both of us! But, last night I put Bacitracin on her incisions and she let me do that with no argument. So, I'm taking that as a really good sign. It won't take her long to accept our new routines with her care and pretty soon she'll probably want to help.

Well, that's it for now. Thank you for all your support through this. You have no idea how much it helps.

Thanks!
~Christy

Post-Op Day 4

Here's how she looks today. I don't think she appreciated me taking her picture. So this is all I got.





Any volunteers to help me with her hair???? I'm thinking it might be time to go short.

I think she looks good. Her swelling is already starting to go down and she can now open her left eye again.

She is definitely more awake and alert. She keeps on holding her arms up for me to pick her up. I held her for a little while and then Tom did. But she doesn't want to be held. She wants me to pick her up and take her out of here. So, when I just hold her she gets mad. Well, she pretty much is staying mad the whole time. Last night when we left I signed that I loved her. She wouldn't even look at me. Just stick a dagger in my heart, will ya?

She's watching Curious George now and is looking pretty comfortable, all things considered. They put her back on trach collar (not getting any breathing support other than oxygen), so that's a step in the right direction. She's on a continuous feed, which I might leave her on for a few days. I don't know how her x-rays looked this morning. I asked the rounding team but they said they had only seen today's x-rays and had not looked at the previous ones, so they don't know if there's an improvement or not. Based on that, I don't know what made them decide that she should go back on trach collar, but whatever.

So, I'm thinking things are looking up and progressing nicely. So, I went ahead and asked about going home. Her nurse said definitely not today.

Oh - so the doc just came in and said that they compared the x-rays and they looked a lot better today. So, I asked him what our goals were to get her home. He said that he wants to make sure she doesn't need any breathing support for at least 24 hours and the surgeons need to be okay with discharging her. Her neurosurgeon came by earlier this morning and released her. So, that just leaves Dr. Magee. I'm sure he'll release her, too. Her incisions look good, so I don't think that will be a problem.

So, with any luck, we can leave sometime tomorrow.

Thanks!
~Christy

Post-Op Day 3

It's been close to 24 hours without Fentanyl. I was hoping that she would be more awake by now. Of course, it is kinda hard to tell if she's awake since her left eye is swollen shut, and her right eye can only open a little. Here is how she looks now. The picture is a little out of focus, but I had to turn off the flash, and well, I'm not that good at taking photos.



I can't believe how little bruising we are seeing on POD 3. I can't help but believe the pressure dressings have helped with that.

Oh - about her breathing episode yesterday - I didn't mean to imply that the nurse wasn't doing what she was supposed to. When she told me that the monitor was telling her Harlie was breathing - she was only telling me that to keep me calm. Her and another nurse were working very hard to get her right again and she didn't want me to totally freak out.

Well, Dr. Magee and his wife came by to check on us. He took off her pressure dressing. I can see now that her neurosurgeon cut her from ear to ear!!! I don't know why he had to, but obviously he did. He already harvested bone from the right side of her head, so they couldn't take from that side. Which is why I'm surprised to see her cut the entire way. The only thing I can think of is that he had to take from somewhere else on her head and he needed to pull the skin back farther.

Anyway, I think she looks more comfortable now. Her hair is a tangled mess and I do not look forward to dealing with that.

She is still on CPAP (continuous positive airway pressure) and will stay on it until tomorrow morning at least. They will take x-rays again tomorrow morning and see how her lungs look. Then they will see if she's ready to go back to her normal trach collar.

They finally started feeding her today. She's getting an ounce per hour.

Our goals for getting her home are:

Get her off CPAP
Good x-rays
Regular feeding schedule
She has to poop
Get her walking

She's off her pain meds. The last time she got Tylenol with Codeine was at 4:30am.

They've done a lot of suctioning, so that's a good sign that she's getting rid of the gunk in her lungs. Hopefully that will show in better x-rays tomorrow.

Hopefully there will be a lot more progress tomorrow.

Thanks,
Christy

Scary Moment - Post-Op Day 2

Saturday noon

She's definitely more swollen. Her left eye is swollen shut and she is starting to bruise. In fact, her whole body is swollen.

But on to more important stuff...

We had a very scary episode a little while ago. She's fine now. But, the intensivist wanted her to get up and walk a little. So, her nurse (who is great) started to get everything ready (an oxygen tank, mobile monitors, etc.). She cleaned her up and put a gown on her. The whole time Harlie wasn't opening her eyes. She was not nearly as feisty as she was yesterday. She just seemed much more lethargic. So, I did not see how in the world she was going to walk. She couldn't even hold her head up.

Well, her bed needed to be changed, so her nurse put her in my lap so they could get her bed all nice. While I was holding her, I could not feel her breathing. My friend Melissa had come to visit - and since they only allow two visitors at the bedside, Tom took a walk, so he wasn't there. Well, I told her nurse that I couldn't feel her breathing. I could see Melissa look at the monitor (which was behind me so I couldn't see it). Then she tickled Harlie's feet. Um, not a good sign.

The nurse looked at the monitor and told me she was breathing. But I could NOT feel her, or hear her breathing. I put my hand on her chest and it was NOT moving - at all! So, I repeated that her chest wasn't moving - and I said something like "how do you know the monitor's right"? I was taught to read the patient - not the monitor. Another nurse came in and bagged her and her nurse told me that she was taking very shallow breaths - which I didn't believe - because her chest was NOT moving and NO sound like breathing could be heard.

Her sats were 1. ONE!!! And I fully believe it. IF she was breathing - it was not enough to detect at all.

So, they bagged her, and suctioned her - a lot. And then suctioned out her nose. Now, let me tell you how much she hates getting her nose suctioned - she fights like there's no tomorrow. Well, she suctioned the heck out of her nose and Harlie never even flinched. Something was definitely NOT right.

Well, they got her breathing again and her sats came up. So, they are taking her off all drugs to see if she can wake up a little. And they put her back on CPAP (positive air pressure). They said that her chest x-rays from earlier this morning showed some collapsing in her left lung. So, they want to try to force her to get some air in there.

So, we'll just have to see what happens. I was very scared there for a few minutes. But, she's okay now. We know that blood got into her lungs - so she's taken a slight step backward. But, hopefully getting her off the drugs will help get things moving in the right direction. I don't want her in pain - but I don't want her to stop breathing, either.

Okay, that's it for now. I think it's pretty safe to say that she will not be discharged tomorrow.

More updates later,
Christy

Post-Op Day 1

I’m sorry I am so late updating the blog. In the PICU there is no access to the internet.

Harlie’s doing well so far. But, she’s been sleeping for the most part. Which I’m glad about. The more she sleeps through this recovery - the better as far as I’m concerned.

There’s been a lot more bleeding this time around. They had to transfuse her during the surgery and then at 11:45pm Thursday night they called to get my consent to give her more. They said that her hemoglobin was down to 9 from 12. Getting a phone call from the hospital at that time of night is a little scary. So I was relieved that’s all it was.

Her neurosurgeon came by to see her first thing this morning. He said her dressings needed to be changed. They were getting saturated in some places. So, a little while later Dr. Magee came by and changed them. Which allowed us to see the incisions. Ugh. They are much worse this time around. Her head incision is a lot longer than it was last time. I have no idea what I’m going to do with her hair. But, I’ll deal with that when I can really see what’s left. He put this pink pressure dressing on her this time.




The incisions under her jaw are much thicker, which Dr. Magee warned us about. He said since her skin had to be stretched so much, he needed to use thicker stitches to keep a strong hold. And the scars can be revised later, once everything is said and done.

She isn’t as swollen or bruised as we expected. I can’t imagine she would escape it. But who knows.

There was a spot at the bottom of Harlie’s jaw line on the right side that stuck out. It felt like a piece of bone that was pointing down and it was very sharp to the touch. There have been several times that I thought for sure it was going to come right through her skin. I asked Dr. Magee if he fixed that while he was in there and he said he did - but it wasn’t bone, it was a screw. Well, that explains why it was so sharp. I am very glad that it is gone now.

My mom and dad came to visit today. So, while they were with her (they only allow two people at her bedside at a time) Tom and I went to one of our favorite restaurants for lunch (No Frill Grill). Well, it is late and I am tired. I’ll write more tomorrow. I have some photos, but I will have to upload them tomorrow.

As always, thank you for keeping us in your thoughts and prayers.
~Christy

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

Surgery is over.

Dr. Magee just came out to tell us that she did well. He advanced her jaw forward two centimeters, which is a good bit. She's in the PICU now, so we can go see her.

Will update again later tonight.

Thanks again for all your thoughts and prayers!
~Christy

Waiting...

waiting and more waiting.

Ugh. It is now 3pm and she's been in there for over 7 hours. SEVEN hours!

The last call came about 30 minutes ago (although it feels like a lot longer). She said that they were almost done.

Thanks,
Christy

Surgery Update #3

Right at 11am we got word that the neurosurgeon was finished his portion (harvested bone from her head). He took it from the left side of her head this time since last time he took it from the right.

Oh, and a funny thing for you... in the car on our way to the hospital I realized I had a spot on my shirt (from breakfast I'm assuming). Ugh. Don't you hate when that happens? So, after they took Harlie back, we went to put her stroller and suction machine in the car. Well would you believe that right beside our car, laying on the ground was one of those Tide stain sticks? I mean, how random is that??? Maybe that's a good sign...

More later!
~Christy

Surgery Update #2

It is 9:30 and we are still waiting for an update. One of the nurses that took her back said that she would call when they started the surgery. It takes quite a while to get her all ready for the surgery to actually start. Back in June when she had her heart surgery, they said it took the anesthesia team a long time to get her ready (gaining access to her veins is becoming more difficult). Once she’s stable and ready, then they are going to do the echo (ultrasound on her heart). That should only take about 15-20 minutes. Then they will be able to start the surgery. So, I should be getting a call any time now.

As far as how long the actual surgery will be, I have no idea. Most surgeons don’t commit to a time, which is understandable.

Handing her over was easier on her this time (vs. November 20th when she got her ear tube), but it is definitely getting harder on us. Most of the time, I’m pretty good. I’ve gotten pretty callused as far as that goes. But, that time in November, and this time were definitely harder. I dream of the day when we are done with surgeries.

I think ignorance is bliss. Knowing what’s ahead as far how she’s going to look is way worse. The last time we did this surgery I was so focused on the positive changes the surgery would bring in her face and the hope of getting decannulated (removing the trach) that I didn’t really think of how she would look post-operatively (bruising, etc.). Now it's more like the other way around.

Well, they just called and said that they started the surgery around 9:30. They took her back at 7:45. She’s going to call every hour.

Tom did some searching on how to get us access to the internet and found that we can rent a Verizon mobile broadband. So he went to go get that, which will make today and the next several days, much more bearable. It makes me wonder how we ever got along without the internet!

Oh, I forgot to tell you that I got a call yesterday that Harlie’s communication device has been approved by all parties and that they will ship it within the next 2-3 weeks! YAY! I am so darn excited! Of course, she won’t be able to hear it until she gets her hearing aid (on January 4th). But during that time we can be getting it all programmed and specific for her. For example, there is a button that she can push that will say “My name is Harlie.” Oh, I just can’t wait!

Thanks for continuing to think of us!
~Christy

Surgery Update #1

This is Christy's mom: she just called to let us know that they took Harlie to the operating room at 7:45 a.m. She does not have access to the internet but will give us updates throughout the day. They gave Harlie Versed so she wasn't stressed.

Christy asked for some, too, but they wouldn't give her any.

We appreciate all the well wishes being sent her way -- Elaine

Surgery rescheduled for Thursday

So, we went and checked in. The nurse that was assigned to us said that she heard the surgery was a go for today. So they started the process to get that blood work they didn't do yesterday. Of course she had to print a new sheet since I balled up the one from yesterday.

Last night, I e-mailed her cardiologist with questions and a heads-up that they wanted the operative info. She e-mailed me back and gave me the name and number of the person I needed to get the ball rolling with the operative notes. So, before they took us back, I ran down the hall to make that call. Then the nurse had me sign a release so that information could be faxed and she went and got that going. And she called the lab and had them come up to get the blood they needed.

Getting blood was terrible, as usual. But over fairly quickly. As soon as they were done Harlie signed get dressed, shoes and let's go. It was still fairly early (maybe around 9am) and the nurse said that she heard surgery was scheduled for 1:30. So, I went on ahead and got her dressed to help calm her down. I was thinking there was NO way were going to sit in that room until 1:30. I'd probably take her for a walk or something, which would require her to be dressed anyway.

Right about then, Dr. Magee came in. He said that he would rather not do surgery today. He said that he doesn't want to force them to do it if they aren't ready. And he didn't want to start her surgery at 1:30, then go through shift change, etc. He wants everyone working on her case to be fresh and ready and focused. Agreed.

Luckily, he said he would re-arrange his schedule and make himself available tomorrow (Thursday). He just needed to call Dr. Dilustro (neurosurgeon) to make sure that he could be available, too. So, they left to get that straight. Right then, the cardiac anesthetist (CA) came into the room. He introduced himself and started talking. He said all the right things - apologized for yesterday and started to work to put my mind at ease. I am very happy that he is NOT one of the docs from yesterday. I guess they gave him the job of clean up duty. Which is fine by me. Actually, I preferred it that way.

He better explained why they wanted the information they wanted. If only that had been done last night. They just wanted the cardiologist here at the hospital to have the information on hand should an emergency arise. The echo - they want an echo before surgery to have a baseline echo - so if something happens, and they have to do another echo, they will have a comparison pre and post op. Sounds great. He also explained that in June 2008, they didn't have cardiac anesthetists. Ah, got it. They are still working on the internal workings of getting a patient properly flagged for a CA.

Clearly.

Then he said that there is nothing stopping him from proceeding with her case. Nothing was going to change from that point to tomorrow, so why wait? He seemed completely confident and competent. I told him that maybe he should talk to Dr. Magee, and see how he feels. Oh, I also told him about the other doc's comments (Well, we don't want to kill her) and he completely cringed. Karen has communicated to the right people about what was said, so we'll see what happens there. If nothing else, I think he should know that was out of line for educational purposes on what to say or not say to a parent.

After a while they all came back and said they had moved her to tomorrow's schedule. Normally, on Thursdays, the first case is scheduled for 8:30am (instead of the standard 7:30am) because the docs have conferences in the morning. But the CA is not going to his conference so they can start at 7:30. Dr. Magee said he wanted the best people in there and they are all coming in early just for Harlie's case.

I think we are all happy with this plan now. And even with a 7:30 start (which usually requires a 5:30 arrival time) we don't have to be there until 6:45 since they have done all the pre-work necessary. So, hopefully tomorrow will go smoothly and quickly with all the best outcomes.

Now I am TIRED. I didn't sleep well at all last night. I had to be up at midnight to turn off her feeding and start her water. Then I had to get up again at 3am to turn off her water - then I couldn't get back to sleep once my mind started going. So, I think I am going to go and rest for a little bit since I don't have Cooper to be chasing after. I miss my boys!

Thanks for all your wonderful support. I will do my best to update the blog when I can.

Take care,
Christy

Major Snag with Surgery

Today sucked. We drove to Norfolk, met with Dr. Magee and Dr. Dilustro (neurosurgeon doing the harvesting of the bone from her skull). All was good. Went downstairs to surgery to meet with anesthesia.

And that's when things went downhill.

We met with an anesthesiologist - and was told that he would not be the one that has her case for tomorrow. No biggie. That's normal. After going over her history, the anesthesiologist said the Chief of Anesthesia has her case and that he would call him to give him a "heads up." I jokingly said, "You mean warn him?"

He was gone for a long while.

He came back and said that the Chief did not feel comfortable being on her case. He said she needs a cardiac anesthesiologist. Well, DUH! Frankly, I didn't even know that CHKD had cardiac anesthesiologists. And the last time she had this surgery there, it wasn't mentioned and her anes was fine with her. But now they want one and he didn't know if one was available. I asked how we can find out if one is available (it was getting late in the afternoon by this point). He said that he needed to call and see if he had left yet. Plus, they wanted a copy of her most current echocardiogram (which was in August). In fact, he asked me if we had it with us. Sure, it's right here in my back pocket. NOT! Then - he KEPT TALKING! HELLO! Stop talking and starting dialing! So, I interrupted him and told him to go get on the phone already! UGH! While he was doing that, Tom jumped on the phone to call her cardiologist in Richmond to have them fax down her echo report.

When Tom came back, he started to get really mad. But I told him to calm down, let's not worry yet. If one is available - then we're in and all will be okay.

So, now it is getting really late and we're still supposed to go get lab work done so they'll have blood ready just in case. The surgery area is now completely empty - we're the only people in there - not one employee (well, except for the poor anes who had to deal with us). I tried to overhear his conversation - but couldn't. While waiting, I ran back up to the 5th floor and found Karen (Dr. Magee's coordinator) and gave her a heads up that something was amiss. Then I run back downstairs.

He finally comes out and says - in not so many words - that yes, a cardiac anes is available, however he is not comfortable, either. WHAT?!?!?!?!!?!?!?! I had to say, "Are you telling me her surgery is cancelled?"

"Yes."

Now I AM MAD. HOPPING MAD. MORE MAD THAN I'VE BEEN IN A LONG TIME.

"He wants a new echo, more information and he wants to meet her."

Okay, fine, tell him to call her cardiologist, come here now, or get here early in the morning, meet her, do the echo and problems solved.

No, he can't come now, and the echo's are all booked up in the morning on other cases.

Then pull an echo off another case.

Silence.

I don't remember exactly the correct order of all that was said, but this is a summary of what I said...

It is so unprofessional for them to make this decision and not ask to talk to me on the phone. They had this guy, who had nothing to do with her case, come and relay the message. I've been around the block. I'm seasoned. I'm her mom. This is major surgery - a huge big deal to cancel - and I deserve to talk to the guy making this decision. They need to put their heads together and come up with solutions. Think out of the box and TRY HARDER!!!!

I WAS PISSED.

At one point - and I can't remember exactly when it was said (and it was said more than once) "Well, we don't want to kill her."

Well, THAT'S professional. He kept saying that after they "cut her open her heart rate could go sky high." I really can't believe we had that conversation.

After I let my feelings be well known, I went to get our stuff. I took the paperwork for the blood work and balled it up and threw it on the floor. Oh, that is so not like me. But, like I said, I was PISSED.

He followed me and said he would try again.

Again, he was gone for a long time. This whole time Harlie is just playing, being so darn good. It makes me so sad that all this is happening and she doesn't know. I know that's better than her knowing. But, it still makes me sad. And, honestly, I am very glad that the circumstances aren't so that Harlie can understand what's going on. Because if she understood his wonderful, "Well, we don't want to kill her" statement, I would have his head.

While he was gone, I called her Richmond cardiologist. He told me that he's had trouble with this facility before. Which is so not comforting. And - even with major trouble - they never once picked up the phone to call him. Which, of course, I offered to get one of her cardiologists on the phone. I mean, if you're a cardiac anes, and you want more info on a patient's heart condition, wouldn't you call her um, hold on, let me think now.... oh yea, her CARDIOLOGIST?!?!?

Well, in the meantime, Dr. Magee has called and spoken with this dude. From what I hear, he said they better get their stuff in gear, because this surgery WILL happen tomorrow. I was told he was pissed, too.

The dude comes back out and says that it is possible it could still happen tomorrow. Luckily Dr. Magee only has one other case tomorrow, so they are switching places and letting him go first in order to buy them time to get the information they want to feel more comfortable with Harlie.

So, instead of being there at 5:30am, we will get there at 7am. She will be given some Versed to make her feel very relaxed and then they will do an echo. And they will call her DC cardiologist to get the operative notes from her last heart surgery.

Tom says that he thinks it's a long shot that surgery will happen tomorrow. I'm trying to be more positive. But, I do agree that I need to prepare to walk out of there tomorrow and go home.

Here are my problems with this whole situation:

1. As a parent, I need to feel completely comfortable and confident in the people that are taking care of my child in a dangerous situation. I need to feel good about her surgeons, and their abilities. And I need to feel good about the guy who is keeping her alive and properly sedated during surgery. The latter, not so much.

2. Do I push it or do I run? While running wouldn't be a hard thing to do (meaning I dread this surgery and the recovery) it MUST happen in order for us to move forward. The decision to do this surgery is not a choice - it is a necessity. And running would just be putting off the inevitable. And, well, we haven't run from anything yet so far, so why start now?

3. Do I really have a child that is THAT scary of a patient? Is she THAT risky? Because this is number - oh, I've lost count - 12, 14? And we are not done. I cannot begin to think that way. I will go crazy and I will be of no use to her if I become that scared.

I tried to explain that to him. If every time we were afraid of the "what ifs" and didn't go forward, she wouldn't be here today. Living afraid is not an option for us.

Do you know what his response to that was? "Well, it could be that 14th time that something goes wrong."

Nice.

Honestly, I try not to judge. But c'mon!!! These are the guys that are supposed to be making me feel better. They are the ones that should have some confidence. This guy was young and an idiot. And I remember his name.

Well, it is late and I still have some e-mails to send. I'll update as soon as I can.

Thanks for all your well wishes. Please keep us in your thoughts and prayers that the right thing happens tomorrow and that all will be okay.

Thanks,
Christy

Photos

In light of her upcoming jaw surgery, I thought I would post some pictures of her, pre-surgery. In most of the pictures of her, she squints her face all up. That's what happens when she forces a smile. I guess it has something to do with her facial nerves or something. Anyway, here she is just laughing comfortably at home. I snuck around and took these pictures without her knowing. If only I could get her to smile like this on purpose!

Preschool friends

The other day, Harlie had her last day at preschool until January. Her surgery is on Wednesday, December 9th. She will look too rough and scary for her preschool friends for at least two weeks. And by that time, it will be Christmas break. So, she will stay out of school until after the holidays. Her teacher and head of school told the students this week that she would be gone for the month. After asking lots of questions, they worked on this poster for Harlie. If you click on the picture it should get bigger.



How sweet is that? I have to admit that seeing it brought tears to my eyes. It is a totally different experience to have her "friends" affected by her surgery and recovery time. I'm not used to that. And I feel bad that they know before Murphy does. We will tell him on Monday. I just didn't want him to worry about it any more than necessary. But I am the worst liar and when Murphy asked me what the poster was for, I definitely paused for a while trying to come up with something. Oh, I am so bad at that! I ended up telling him that Harlie had her last day at preschool for a while and they just wanted her to know they were going to miss her. Which was the truth, of course. Luckily he didn't ask me why she wasn't going to go to school. Whew!

Well, just a short one tonight. More later!
~Christy

Child Study Meeting

The child study meeting for Harlie went well. I forgot exactly what happens in a child study meeting. Harlie's first was in June. I did not attend because it happened during her heart surgery hospitalization.

Basically people from different specialties (speech, physical therapy, developmental, counseling, etc.) attend the meeting and decide what areas to test, or evaluate Harlie in - to determine what services she qualifies to receive. So, in June, they determined, based on the information they had (her medical history), that she should be tested in her speech and physical abilities. She was evaluated in both areas during the summer, and at an Eligibility Meeting (where the evaluators were in attendance) it was decided that she was eligible to receive speech and physical therapy through the county's school system. That's when they wrote her Individual Education Plan (IEP) which spells out goals we want her to achieve in both areas. So, in summary, she can't receive services in an area where she's not tested.

Anyway, after a few month's therapy with the school services, her speech therapist thought we should look into getting more services for her. Especially in light of her hearing impairment. So, we met to go over things again. This time around, they are testing/evaluating her in five different areas (speech, audiological, medical, developmental and something else I can't remember right now). The reason they are re-testing her in speech is because there is a test for hearing kids, and a different test for non-hearing kids. The last time, she got the test for hearing kids. So, this time she'll get the other test.

Over the next couple of months she'll be tested in those different areas (except for audiological since she just had her ABR test). I think she has to be tested every year. Once all the tests have been conducted, we'll have an Eligibility Meeting, where they will determine what services she's eligible to receive.

Even though I don't know how things are going to go with her testing, etc. I do feel that everyone on the "team" wants to give her the right tools to help her to succeed. And I am so grateful for that. While I do wish we caught her hearing impairment sooner, she's still only three - and with the right tools, I think we can catch her up.

Take care!
~Christy