Surgery Update

Alex's hamstring lengthening and tendon release surgery was on Thursday.  The original plan was to have the hamstring lengthening and double capsulotomies behind the knees.  Tuesday afternoon I was driving Alex to therapy and I got a phone call from her doctor.  I was a little surprised to hear from the actual doctor, I have to say.  And I was even more surprised when he said that he had been thinking about Alex's case and he was calling to tell me that he wanted to do a different procedure in place of the capsulotomies.  In his opinion, the capsulotomy surgery is very 'insulting' to the joints and a difficult recovery - including having to be in hard casts for recovery.  He proposed putting plates in behind Alex's knees with titanium screws to keep her knees straight as she grows.  It's a slower process, but one that he feels will be much more successful.  I'd be lying if I didn't say I didn't care what kind of surgery it was as long as she didn't have to have the hard plaster casts.  He said they would have to do X-rays before the surgery to make sure her growth plates looked ok before we would know for sure if that was an option so I didn't want to get my hopes up in case she had no room. 

Thursday morning we loaded her up and headed to UVA hospital in Charlottesville.  We were to be at the hospital at noon for a 1:30 surgery.

 

Alex couldn't eat after midnight so by the time we got to the hospital it had already been about 20 hours since she had a blenderized feeding and 14 hours since she had a tube feeding and she was starting to get hungry!  It did not help that they did not call us up for her pre-op until after 3PM.  She had been SO good all day sitting and waiting.  So good.  As soon as we got to the pre-op room and she saw the hospital bed and the equipment in the room she turned and looked at us with a real funny/worried look on her face.  Immediately her mood changed and she got really agitated.  Aaron was talking to her and telling her what was going on and he always seems to make things better.

 

 

Once all of the action started and people started coming in the room she got even more upset and she wanted absolutely no part of the nurses trying to get her vitals.  When the anesthesia doctors came in to talk to us they saw how upset she was and wanted to give her some Versed to calm her down before they took her back - they wouldn't let me or Aaron go back with her while they put her under so they wanted to make her as calm as possible.  The Versed seemed to have the opposite effect on her and she got a lot more agitated.   X-ray came in to get the pictures of her knees and that was a battle.  The only thing that made her calm down and smile again....

being with Daddy

 

But then it was time and we had to say our prayers over her, kiss her good-bye and pray she was in the best hands.

 

 

It's probably the single hardest thing for a parent to do is to watch their child go from this

 

 

to this

to this.

 

The surgery took a little over two hours and we were able to see her around 6:30.  The X-rays showed she was able to get the plates so thankfully she didn't need the hard casts.  Unfortunately, that hasn't really made a difference because she has been crying and moaning ever since she woke up in the PACU. 

 

We pulled out all of her favorite books and toys but she could honestly care less.  The night nurse had her pain at a 10 and they gave her tons of different pain meds and Valium but it hasn't made a bit of difference.  

 

She has three incisions on each leg and her legs are wrapped in ace bandages and she also has knee immobilizers on that have to stay on for three weeks.  We are supposed to take her bandages off tomorrow morning and we see the surgeon again the first week of January and we will likely switch over to the special braces we had made for her in anticipation of the surgery.

 

 

Her feet are really swollen but the surgeon said that's normal.  Alex has such poor circulation from not being mobile so her feet are always freezing.  It's been very odd to touch her feet because they are now extremely hot to the touch.

 

 

It's hard to see her so uncomfortable.

 

 

For very brief periods of time the Valium seems to kick in and she gets a few minutes of relief, but it does not last long.

 

 

Before we left the hospital they wanted physical and occupational therapists to come in and get her up.  We got her dressed and manipulated her wheel chair a bit and they wanted her to sit up for at least an hour so we took a walk around the floor.

 

She and Aaron were checking out the mountains in the distance.

 

 

You can tell how medicated she is.

 

 

 

The hospital was full and one of the nurses said they were on diversion.  The pediatric floor was full and lots of the kids were under contact precaution so after seeing all of that I really wanted to keep our walk short - and even more importantly, I wanted to keep our visit as short as possible - I couldn't wait for our discharge papers.  I do have to say, Aaron and I were so impressed with UVA.  Everyone from admissions to the PACU to the floor were absolutely amazing, everyone was so kind and they couldn't do enough for you.  Not that we would like to have a 'hosptial of choice', but Aaron and I commented as we were walking around that our experience there was second to none and we couldn't have been more impressed. 

So we were hoping that getting Alex home would make her happy and more comfortable, but unfortunately that is not the case.

 

She is allergic to Codeine and the pain meds they prescribed for her are a synthetic form which they said she wouldn't have a problem with, but it is making her so itchy and she's practically scratched the skin off her nose.  She's had 3 nose bleeds so far so we've discontinued that and are hoping the Valium and ibuprofen can keep her comfortable.

 

The knee immobilizers need to stay on to help the hamstrings keep their stretch but her doctor did say we could take them off for a little bit if it was going to make her more comfortable. After two days of crying we gave it a shot.

 

 

Still miserable.  It is so hard to not know what's making her so unhappy.  I KNOW her throat hurts from being intubated.  She sounds so hoarse.  Is it the medicine making her itchy, is it her incisions,  is it her stomach from all of the meds?  Is it from being in the immobilizers and not being able to move?  There are just too many variables to know.

 

 

She did manage to sleep for a little over an hour and Aaron and I just smiled.  There was just something about her arms behind her head that made us laugh.
 

 

Thank you so much to everyone who has called, e-mailed, texted and facebook messaged us, it really means a TON when you're in the hospital to know that people are thinking and praying for you.  Please pray her pain begins to subside and she can get comfortable soon.