Little man became very sick on Saturday from his disorder. His ammonia reached 295 and he was transported to Johns Hopkins last night. We were joyful to learn that rescue meds worked to bring his ammonia down to 57 by midnight however it has been slowly creeping back up today to the 150’s.
Corrigan has had a terrible few days, he’s been suffering the neurological effects of the ammonia and is very uncomfortable when awake. I will talk more about yesterday later, it was truly dreadful, but right now I just want to make a post to mark the date for my records and possibly post updates on this post in the coming days.
Corrigan is sleeping right now and we are awaiting repeat ammonia labs drawn within the last hour. We appreciate your prayers.
Update: Sunday 2:50pm
The lab misplaced his blood for ammonia draw. It was a very important result we needed to determine the next step. The lab did locate the sample and is running it but it will not be reliable now. More
blood will be taken, and we wait again.
Update: the misplaced sample came back at 111 which means we do not have to redraw until tonight (8pm) because ammonia labs may be falsely high but even if that result is not accurate it would only mean it was even lower than 111. Trending down again, very encouraging. However, Corrigan is still sleeping. He is rousable but angry and agitated when awake. It’s so quiet here. I miss the sound of his sweet voice.
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Update: Corrigan is awake. I was surfing through tv channels trying to find cartoons for him to watch. Nothing but a regular show on Disney was appropriate for him. We watched a few minutes and the real dog starting “talking” with whatever effect they use to make it look like his mouth is moving along with the words. I so wish you could have seen Corrigan as he realized THE DOG WAS TALKING- he turned to me with so much confusion, touched his head and said “ambulance yes?!?” I’m pretty sure he just asked me if he had hit his head and was hallucinating. Ha.
Update: 6:50pm Sunday
(See above photo!)
We had a few good hours of happy and fun. However, he is hungry and still NPO per doctors orders and not at all happy about it. It’s hard to hear your kid beg for food and have to tell them “no”… Especially a kid who rarely wants to eat by mouth. They’ve pages the doc to see if he can start to eat again soon.
Update: 9:55pm Sunday
Ammonia now 63
Update: noon Monday
Corrigan’s ammonia is in the 50’s. Slowly inching down to his normal number. They’re slowly adding protein back to his diet today and will get him back up to his full amount tomorrow if his ammonia holds steady. In order to stabilize him, especially his amino acids, I was told to expect that he an I will be here until at least Friday or Saturday. *sigh* It was expected, and the best thing to do considering our distance from this hospital, but it won’t be easy. He’s already sick of being here. Please pray for Corrigan and I. That this time together will be a blessing to us and not a six-day power struggle. In the meantime, here’s my sensory-sensitive, new spoon-user attempting the art of jello consumption!