Easier Done Than Said

Cuddling together in bed the morning after surgery #4.
Cuddling together in bed the morning after surgery #4.

We did it!  And it wasn’t that bad, granted we were prepared for battle, a catastrophe, prepared to be at the hospital forever and then locked home with a screaming uncomfortable child for a week.  Turns out, the doctors were right when they told us this was an easy one.  Aleck went in for surgery on Thursday morning and by Saturday morning was asking to be put on his shopping cart so that he could walk around the house.  We made him hold off just one more day to make sure our little guy was AOK.  Stayed at Lurie for one night and by 9am our discharge paperwork was going through.  He was eating, he was drinking, and enjoying himself though every time they came to check his vitals and give him more pain medicine it was quite a scene.  But he calmed down easily and enjoyed the constant TV and IPad entertainment, and still talks excitedly about getting to sleep in a “big white bed” at the hospital.  His X-Rays looked good and we got to take his cute little plate and screws home with us.  Looks like we’re going to have to make some kind of project out of his plate and the piece of his Spica cast that I kept.  What do you think, should we hang it over the fireplace?

The botox in his arms went fine and will probably take a few more days to really come into effect.  We are excited to see if there is any change in his arms and their movement and also preparing ourselves for the challenge that could accompany this difference in his upper body mobility.  For the two weeks before the surgery his OT and I collaborated on a bunch of videos of Aleck doing different tasks, playing different games, with and without his finally finished Batsuit, so that we can easily recreate these once the effect of the Botox begins.  We also did measurements so we can compare and contrast the before and after hoping that if this does give him additional range we can use all of this to build a case with Blue Cross Blue Shield to get another round covered.  Only time will tell.

Aleck also had an endoscopy while he was under anesthesia last week and just like every other GI related test we’ve done, it showed nothing.  For many people this would be good news, a sigh of relief, but of course as parents looking for answers it’s just frustrating.  To make matters worse, during our appointment on Tuesday before the surgery, we went to see his ENT (ear nose throat) and confirmed suspicions I had that Aleck’s adenoids had grown back.  I guess they aren’t removed entirely, simply shaved down, and bad acid-reflux can cause them to grow back.  Last year when he had that surgery his nasal passages were blocked 100% by the adenoids.  In just one year they’ve grown back 80% which means that he’s 80% blocked from breathing through his nose.  Those of you who are keeping score, this means we are looking at surgery #5 to remove them again.  However, it doesn’t make any sense to remove them before getting his acid-reflux under control, unless it gets so bad that he literally can’t breathe out of his nose.  Poor little guy, wakes up every morning with seriously chapped lips from breathing out of his mouth all night long, and when he was teething last month his lips would be all bloody and cracked on top of it. So what was our GI’s response to all of this?  Well, he doesn’t even know about the adenoids problem since he prefers to talk to me through his nurse and she decided she didn’t want to be in the middle of it as I probably exploded on the phone when she told me that his plan of action is to prescribe periactin, a decongestant with the side effect of making him hungry.  If I want to talk to him myself I can sign up for the “My Chart” program through Lurie and then wait 5-7 days for them to mail me a password so I can log in and email my son’s GI.

Needless to say, we are actively looking for a new GI.  Already have an appointment with one for the middle of the month but will want to meet with two before we settle into a new person.  Unfortunately most of the recommendations I’ve gotten are for people through the University of Chicago which is just so inconveniently located, but they are known for their GI program and if they can help us find a solution to all of this it’ll be worth it.  No matter where we end up I’m pretty convinced that our new course of action with Aleck with involve another round of food diaries along with eliminating all kinds of food from his diet which makes me incredibly nervous.  He’s so hard to feed, so hard to get him to consume enough food to keep him going, when they tell me no more diary and no more soy I’ll probably break down and cry since at that point I’ll honestly be clueless about how to feed my own child again. It’s going to be a ton of more work for us to get him eating and feeling healthy, which is of course what we need to do, but so incredibly daunting with everything else that’s already on our plate.  If we didn’t have so many other issues we are working on with his mobility and progress in therapy I know we would have changed doctors ions ago since this is so overdue.  I’m still waiting on a recommendation from Aleck’s ENT as well since I would like these two doctors to talk to each other since sometimes it feels like I’m not being taken seriously. After all, this GI, though a lovely person and someone I’ve known for years (love his wife, warm wonderful people), he’s not been taking any of Aleck’s issues seriously enough for me and now I’ve got the adenoids to prove it.

3 Replies to “Easier Done Than Said”

  1. Dear Lynn, Criag and of course Iron man, Aleck
    you all have been thru so much,,,,,i hope you find the RIGHT GI Doc……….enuff is enuff
    once again such great parents, such a good lil boy..you all may be surprised and when this is all done,,,,,hopefully you will catch a break <3
    thinking and praying for you all

  2. Lynn, you and Craig and Aleck continue to amaze. I know it’s reputation, but Last year I left UofC for Northwestern GI and was much happier. And the Chief of UofC GI, who was my doctor when I left, also just moved to Northwestern. Clearly they are on the up and up. I can give you my doc’s contact info tthough her specialty is Crohn’s, she might know a good pediatric GI closer to you.. And she’s a mother. 🙂

What do you think?