17 March 2016

Surgery #7- Hips and legs

Tuesday Liam went into UNC Children's Hospital for a realignment. He had a femoral and pelvic osteotomy, tendon lengthening in both legs, and a hamstring lengthening in one leg. The surgery took right wround four hours but from the time they took him back until we saw him was almost 7 hours. He was preetty much completely out of it during the first day and adapted well to coming out of the surgery. 

We knew what to expect when we saw him but it was still quite a shock to see his legs casted so far apart. We were told he would have a 12" bar between his legs but it's ove 14" wide itself along with the deoth of the casts so his legs are really 16" apart.

The Dr was happy we went ahead and did the procedure now beccause his left hip was almost out of socket. That shift wore down the side of his hip and reshaped his femur. The Dr shaved down and reformed his left femur and using the piece he shaved off, they bolted it to his hip lengthening the hip back to a normal shape. He didn't need to use cadaver bone so that was good. Liam's right hip needed minimal reshaping but hewanted to do it while they had him under. They then cuts his tendons to lenghten them, these are what pulled his hip so far out of alignment and then he cut into his hamstrings to lengthen these as well due to the new length of his legs. 

Liam's blood clotting factor was low and in order to remove his epidural they needed it in normal limits. In order to do that he got a transfusion of plasma today. Once that was in they took the epidural out. All pain management is now done through oral meds. We are trying to get them at a level that keeps him as pain free as possible but so far today that has been very difficult. If he wakes he cries in pain so he tries to stay asleep.

It has been pretty rough today. Not only does he have discomfort from the surgery he has his legs weighted down with casts and he is currently stuck in pretty much the same position all day long. The swelling on his thighs and the bruising have diminished some and we have lidocain patches on them to try and help just that little bit more. 

I am hoping tomorrow he is a bit better and the pain is more manageable. I miss his silly smiles. We were supposed to be discharged tomorrow but with hiis level of pain we will be here at least one more day.

P.S. UNC has been awesome to us. Every single person we have met has been attentive and helpful with Liam. We have had a team of people in and out of his room every day checking on us and caring for him. Liam's had a pain management team, the surgeon, resident surgeon, nurses, OT, PT, a teacher, case manager, anesthesiologist,  etc... And I have nothing but great things to say about all of them and our experience here.

17 February 2016

Sleep study done

Liam had a sleep study recently that we are still awaiting results on. But you know your kiddo has a sleep problem when you get there for check in at 5:30 pm and he doesn't fall asleep until 4:30 am. 😳 I couldn't believe he lasted that long. He has never stayed awake that long before, 2:30 sure, but 4:30? I can't believe how well he can get by with so little sleep. I did feel very blessed in that with all those wires on his body and head, he was a happy guy the whole time. He didn't fuss one bit. And with everything he had on him I was surprised he did so well. We have to see his ENT in Chapel Hill next month to get the results, but I did walk away thinking that it was probably a good idea we went ahead with the study. Because they wired up everything, his chin and jaw were a part of the data and while we were there he did his weird jaw thing. So I am hoping that will be able to give the ENT some solid info on what he is doing so she can figure out how to help him with it. Now our next step is crossing off pulmonology.

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14 December 2015

A season of firsts

Nothing goes quickly in the world of special needs and after a trip to Shriners in the spring where hip surgery was recommended, we finally got in to specialists in Chapel Hill for a second opinion and establish ourselves with an orthopedist closer to home.  I was thrilled with the level of attention and we got better information than from Shriners.

Liam's left hip is close to being pulled out of socket. He needs surgery to repair both the hip and the socket and while they are in there they want to do some adjusting to his right hip as well. It will be a 2 day hospital stay with a 4 week recover in full leg casts with an 18 inch bar keeping his legs apart the entire time.

He is going to be so thrilled.

He asked me if Liam is in any pain. He hasn't been in his stander for a few months because he started crying when I would put him in it so I assume that was due to his hip. Do you ever get a 'catch' in your hip? That will happen to Liam and he is uncomfortable. And sometimes his hips makes a loud popping noise if we try to do range of motion. But for the most part he seems to not be bothered too much by it yet. He could just also be used to the feeling because it has slowly moved out over the years.

Chapel Hill was actually disappointed we hadn't been seeing them for the last few years to have kept Liam's hip from getting this bad. While there are no gaurantees that it wouldn't have happened eventually, we will never know if we could have prevented this. I am so confused as to how he was able to get to this point with no one noticing.

I am hoping we can schedule surgery towards the end of the school year so Liam won't have to miss much school. I meet with the surgeon next month to talk to him about delaying the surgery and if he thinks that would be ok to do.

Next month we also meet with someone new: pulmonology. After a check with an ENT specialist, who has seen people do the weird thing he does with his jaw, she wants us to rule out anything pulmonology wise  (asthma, etc) before we look at ways to help him with this muscle issue. That also led us to a scheduled sleep study in February to see if Liam is having any apnea episodes with this while he sleeps.

After those things are done, then maybe we can look at doing something to help him with the dystonic movements in his throat and jaw. She said she wouldnt even really know where to begin right now and wanted to make sure there wasn't something else going on that needed more attention.

So here we are, in a season of firsts with new doctors, new procedures, new tests, and new treatments. Praying that things get easier for Liam soon.

05 October 2015

Finally what seems to be an Answer.

I mean, would you want to sleep with that stupid thing around your neck??

Over a year ago, my sweet Liam started a new thing with his 'mouth'. While maddeningly frustrating for him and us, we chocked it up to it being one of Liam's newest stims (a behavior that is used to stimulate yourself in some way- honestly the best way to describe it) and waited for it to pass.

When Liam was just a wee thing he would chew on his inner right cheek. He did it for so long that he actually built up a callous in his cheek. After a year of that he moved on to sticking his tongue out and biting it. I have lots of cutesy pictures of him doing it. Then he moved on to sucking in his bottom lip and biting it. Lots of cutesy pics of that too. And then the newest one started. He would open his mouth, lock his jaw, and sound like he was choking. It's real cute let me tell you....

We thought this was another stage and it would pass but as the year, now year and a half, of doing it has rolled on with no end in site, it has had me asking questions to everyone in the medical world he sees. I mean, he will even do it if he wakes up at night! We first started out with OT who was working on oral motor issues with us. She had no idea what he was doing, is it on purpose? is it unintentional? is he doing it due to his CP? We worked at prompts to get him to stop when he started and let me tell you, he would work for Katie, cooperating like the cute little guy he is, but when he got home, nothing. He would actually gag on me if I tried the prompts. And you all know he can vomit at the drop of a hat if he gags from all of his years of experience.😳 So I quit that super fast!
After that we had PT look at him. If you need a PT, this is the one. She knows her stuff, loves her kids, and kills herself weekly loving on babies to make their lives better. She had the same wonders we did about Liam's purpose in sucking in air and choking himself. She would do a move that would make him stop it instantly. But watching him do it with her made me realize something, Liam wasn't 'always' doing it on purpose. Then one day during therapy instead of stopping him, she let him go on and on and on. Over and over he would cock his jaw open and compress his airway, then inhale deeply, close his mouth, then start again. And she was at a loss.

We had an appointment for Liam's yearly pediatrician check up ( thank God my little medical conundrum is healthy and we only have to go once a year) and when I showed her, she'd never seen it before. Not surprising, Liam humbles everyone I tell ya.

The following week we had a highly anticipated visit with a specialist in Chapel Hill to speak with him about Liam's hips. When I told him why Liam was wearing a neck brace and what would happen if I took it off, he nodded his head. I knew then this appointment was going places. I took it off and Liam performed right on time. Choking and sputtering away.

I told him no one I had talked to knew what he was doing and was hoping he could help us. He asked a bunch of questions and that brought us to the real issue and a solution (hopefully). liam is not doing it on purpose. His dystonia is causing either his neck, his throat, his jaw, or his pallet to contract and making him do it over and over every day. He said he has seen kids with it and recommended us to an ENT in Chapel Hill that can help us further. He also suggested we try Liam on Baclofen. This is a drug I know much about from being in the CP community and one we have never needed for Liam because Liam isn't too spastic in his muscles.

While I am thrilled to have a cause, I admit I am not thrilled about Liam being on the medicine. It has to be taken 3 times a day because its effects wear off after 6 hours. We were to start this week with only one dose at night to get him used to it because it (can) makes them sleepy. I was worried about how sleepy it would make him and so far on day 3 he's not shown any side effects. So tomorrow I am adding in dose 2.

We are praying this medicine helps him. He is so frustrated with this jaw thing and to have a medicine help him stop doing it would be a game changer for him. He wouldn't have to wear the stupid neck brace all the time, he wouldn't cry at night because he's woken up and he's sputtering for air, and he could concentrate better in school. 
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