Now that Corrigan is stable, and the crisis is behind us, I can stop updating the previous post. His last ammonia was 30 and today they will wean him from his rescue meds and move him back to home medications. There has been a downward trend in his branch chains over the last few months, despite frequent adjustments in his diet, so the plan is to stay here for as long as it takes to get those numbers as close to perfect as possible. I call this his “reset” and it was necessary to do this two years ago as well. It may mean a prolonged stay but is far better for Corrigan than making adjustments, waiting for outpatient labs from home to be returned nine days later, and then making more adjustments.
There are times, especially when lab results show us that things are particularly low, that we don’t have that kind of time. Our hospital cannot do plasma aminos and LabCorp is our only local option. They send out the sample to the moon or something and it takes 9-10 days before Hopkins gets the results. This most recent crisis a good example of how a long wait can be bad news for Corrigan. The doctor got results on Monday and made changes that I implemented that evening but it wasn’t fast enough and he decompensated slowly over the following five days. Our only good option is to travel 2.5 hours for him to give a single vial of blood and that is what we have done for years but winter weather makes that tricky.
“Whatever it takes” is our mantra but it isn’t easy. One old car with bald tires, inclement weather, and a small patient with PPTSD, ugh. I always pray for a cure but I also pray for the machine that would run his aminos to be funded for our local hospital one day.
All things considered Corrigan is in fairly good spirits! He had a bout of insomnia that had him unable to sleep for 21 hours yesterday and even with his legs so restless and body twitching from exhaustion (??) he was never mean or even all that irritated. I suffer from RLS syndrome myself and I often whimper in frustration at my wiggly, crazy legs but Corrigan was so good-natured about it all. Even when he finally fell asleep, his body jerked and twitched. No one is sure why he had such a difficult time, it’s never happened to him before, but Lord willing it was a one-time event and he can sleep soundly this evening.
His appetite is crazy good! He is eating Fruit Loops (no milk) faster than I can order them and last night he noshed on mashed potatoes and applesauce. This morning he tried diced peaches for the first time and consumed the entire serving!
Once they discontinue rescue meds, he won’t be so tethered to pumps and we can get him out and stretch his legs on the unit. He will be so thrilled. It’s hard to be an active little boy and stuck in a bed for days and days but again, he’s a good sport. Child Life helps to keep his toys rotated to prevent boredom and there are often visitors like clowns, therapy dogs, grandparents and yesterday the Baltimore Symphony stopped by to bring a little holiday music to the floor. We actually were able spring him for his bed to shake some sleigh bells with the musicians! He can now say “oh yeah, I’ve played with the BSO, no biggie.”
I took video but I’m posting from my phone (apologies for errors in spacing etc.) and it won’t upload. I will try uploading it to YouTube a little later and might be able to insert it that way. You’ve probably already seen it on Facebook though but I’d like it here for my virtual library as well.
Thanks for checking in on Corrigan. He’s a tough cookie and recovering well!