Corrigan is back in the hospital but this time at Johns Hopkins. It’s been years since we’ve been admitted here for a hyperammonemic event but this time his ammonia reached 240 and we were fortunate to be in the area visiting family.
Corrigan has been here since Saturday morning and as of today his ammonia is back to his “normal.” However, this is the second hyperammonemic event for him in 14 days so his team wants him to stay hospitalized while they wiggle some things around with his diet and meds to see if we can get him metabolically stable.
He hasn’t had perfect labs since June and the changes they are making at his regular appointments aren’t helping to improve his amino acids. Taking a step back ( closer to June’s diet and meds ) can destabilize him a bit so he needs to be here until at least Wednesday…maybe longer ( groan).
Since we came through the ER for the first time in over two years, Corrigan was given a new Project Linus blanket. I don’t know how to link on a phone post but if you Google ” project Linus” you can learn more about the wonderful folks using their talents to bring comfort to sick kids in hospitals across the country.
In the photo above you can see how faded the tag is on Corrigan’s favorite Project Linus blankie. Sadly he has many beautiful Linus blankets but the pink, blue and white one is the lovey he cannot live without. In fact, I joke that when we hear Corrigan retching, about to vomit, the proper reaction is to first save the blanket and THEN lift the child to make sure he doesn’t choke. And by “joke” I mean, “I’m dead serious.”
A puked-on blanket means nearly two hours of washer and dryer time and when you need to take a sick and frightened child to the ER you MUST HAVE BLANKIE!
He will not eat, drink or relax without it at least nearby but his new blanket has piqued his interest and is now always entwined with his old one. I dare to hope we may have a backup blanket but I can’t force that kind of connection.
I do know that I’m so thankful to those that hand-make these beautiful blankets. I was excited that this new one had the actual name and address of the lady who made it…I’m going to send her a photo and a thank you note.
Corrigan is doing great here. His ability to adapt is something to marvel…especially if you know how active he is when he is not hospitalized…I hope his patience holds for several more days!!
(This is the first time I’ve ever blogged from my phone so please forgive me if this is wonky)