You would think we would have learned this lesson well enough by now (to expect the unexpected) as it seems like every time we come for checkups, something unexpected pops up. This trip it was 2 unexpected surgeries that popped into our schedule just during the first day of appointments. We started with the typical lab work and BMT clinical visit. No surprises here, though I was hoping for more guidance on whether we should continue weekly ERT, there is just not enough data out there to lead us in either direction. So we are left to contemplate this important decision on our own. This was the only expected part of our day.
We then went had neurology. I guess if I were keeping better records it would be 3 unexpected add-ons to our schedule. Neurology added a full spine MRI to his existing brain and cervical spine MRI just to rule out any neuro related issues affecting his toe-walking and wetting problems. I really think the toe-walking is related to his hip/femur surgery but I guess having a full MRI does have its benefits. I didn't count this as an additional item since he was already scheduled for an MRI already.
We then headed over to Gillette's to see Dr. Walker, his ortho surgeon. He is healing very well from his hip/femur surgery, however, it appears the bracket on the left leg is starting to come through the other side of the bone and it appears cloudy around the top part of the bracket that sticks into the bone which may indicate an infection. The screws also look like they may be coming loose so long story short, we decided it best to remove the brackets as soon as possible which happens to be this Friday. Normally, this would't be that big of a deal as we knew we had to get the brackets out eventually but there is an "unknown" to this equation in that we don't know for sure if there is an infection and if there is, what kind it is and whether or not we will have to be admitted to the hospital for overnight or even longer. Normally the bracket removal can be outpatient but he won't know until he sees the bracket/bone on whether he wants to start him on IV antibiotics or not. You would think if there was an infection that he would show other symptoms such as a fever but then again this is Coleson and he is a good "hider". He rarely shows clinical symptoms. So we asked for his MRI to be moved to this hospital so we could avoid back to back sedations or so we thought.
Then we went to Audiology and ENT. We actually got mixed results during his hearing test. His left ear has improved from last year, while his right ear has worsened. Traditionally his left ear was worse than his right but the right tube is still in but seems to be plugged which is affecting his hearing.... so when we saw ENT right after, he suggested we put in new tubes in both ears. So we scheduled this for Thursday. Unfortunately these are 2 different hospitals so we can't do this all in 1 shot. But tubes are fairly quick and are a light sedation so I guess that gives me a little relief. Coleson is going to hate having these back to back but I am hoping praying that this is it for him....
Today we got confirmation of his ADHD. This is pretty typical in all MPS patients no matter what type so they were going to provide us with better tools to implement into his IEP at school to hopefully help while we contemplate medicating. The only other thing we had on the schedule was his bone density and DEXA scan which requires him to lay still for 4 minutes. We haven't been successful doing this in prior years.
Tomorrow is Endocrine and ophthalmology. We hope to get more clarity around his thyroid medication with Endocrine and don't know what to expect from ophthalmology. Will try to update as we learn more.
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