Mason is a happy boy to be home, even if it's infusion night!
Today we went to Children's Hospital (first time there for a sedation) to have his EUA (exam under anesthesia). He was also getting some labs drawn while he was out.
The reason for the exam was that at his regular eye checkup a couple weeks ago, his intra-ocular pressures were very high (30+) which is very rare for him, even with his history of glaucoma (usually they're in the high teens. low 20s). He wasn't upset at all for the non sedated test so this was a very surprising finding--usually he's screaming his head off and they're still not too high so that he was calm and still high that was odd. He doesn't use drops though so we had to rule out a pressure problem by doing it again sedated.
I was praying that the reason for the elevation was not a deterioration in the glaucoma situation per se, but rather a temporary effect of his ear drops (ciprodex, an antibiotic/steroid combo) that he has been off a few weeks now. (Last year when I was on a similar steroid ear drop I had an eye exam and MY pressures were high, which they've never been before! And steroids are known to be able to increase eye pressure-but docs don't usually remember to say anything about it.)
Anyway, overall today went very smoothly.
First answer to prayer - the pressures were great in both eyes!! Although we had to sign a waver saying he could get a laser treatment to relieve pressure if needed, he doesn't even need to go on drops! Yay! :D Maybe it really was just the steroid ear drops! Here are a few other praise reports...
- No need for intubation! (they just used gas)
- They found a vein for IV backup after he was sedated (took a few tries but thankful they got one)
- They were able to draw the labs (one was drawn incorrectly but at least they got the others and saved him some awake stress).
-Some unexpected good news: his lens is no longer adhered to his cornea as it was in the past in his left eye! Now it is just a cataract, which could be fixed with a lens implant, depending on how well his optic nerve in that eye can see even with a new lens (the visual evoked potential testing, like an EEG of his eyes, will be in mid April and will guide us further on the potential for repairing his cataract).
-He did okay in recovery (not happy but not big distress either - and he was 100% himself the minute he hit the stroller and knew he was headed home!)
So thanks for your prayers, we are happy it all went so well and maybe some potential for vision improvement to pray for direction on in coming weeks!
You can continue to pray for him as he has some unresolved GI distress issues for about a month now (an upper GI xrays series yesterday didn't give any clues). We are going to be asking about something called "bile reflux" because of how we have seen neon green on his feeding tube gauze in the past couple weeks and bile shouldn't be sitting in his stomach. If that's the issue maybe they can give him something to help move out the bile. Just not sure how they can "know" without another test sedated which we are not eager to do anytime soon.
I'm really sad for this kids they are too young to experience this. This is the reason why I always went to eye exam irmo sc for my regular eye checkup.
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