We are home already!
Praise the Lord.
Corrigan was admitted to John’s hopkins at around 5:30pm, on Easter Sunday, and he was discharged the following day near 7pm. That is the shortest stay we have ever had. Amazing!
Corrigan’s ammonia was 149 when we arrived at WMHS emergency room and was a pretty normal 56 after the 90 minute bolus of his emergency meds. Per protocol he still had to be transported to Hopkins via ambulance due to his hyperammonemia and his ammonia was an even better 44 when he arrived. Corrigan typically hovers in the upper 40’s/lower 50’s on his ammonia during his healthy times so it was a bit frustrating to still have to travel to Hopkins for maintenance that could easily be handled locally. I have contacted his primary metabolic physician about this matter, via email, this morning and am hoping that all parties will get together ( local pediatrician…peds department folk etc) soon to implement a new plan on treating Corrigan locally when his Citrullinemia is quickly under control with ammonul.
I was completely stunned when the doctors walked in around dinnertime yesterday to ask if I felt that Corrigan was back to normal and if we wanted to go home. Of course, medically they knew he was stable but they were asking if I felt that his personality was back to how he acted daily. I have to mention that this time, strangely, Corrigan became very “manic” when he was in our local ER, shortly after his infusion began. He was moving around quickly in his bed, faster than he has ever been capable of moving at home, and his eyes seemed very whirly and unable to really focus. He would move toward something and then stop almost halfway to grabbing it and then laugh and spin his head oddly and swoop the other way. It was hard, alone, to try and keep him safe as he was frantically whipping himself around. Also, the laughter and smiling was a little bit funny but really it just freaked me out. It did not seem to have a purpose or be in reaction to something concrete…it was more like he was on some very interesting drug that were making him drunk. I called his geneticist and she did not think that it was a reaction to the meds or a reaction to the ammonia increase in his brain but I know that he was definately NOT himself…it was brief but very strange.
The metabolic doctors that were on-call this week felt that Corrigan was very stable before he even arrived in Baltimore and because he took to his bottle so quickly and kept it down (and had continued good ammonia labs every four hours) that he was better off at home than in the hospital that had several virulant respiratory issues flying around the floors. The risk was great every hour he stuck around that he might catch something that would knock him on his butt for far longer than usual so off we went.
This morning Corrigan awoke with a very messy nose, red and watery eyes and frequent sneezing. It seems that Little C has caught a cold and while nobody wants to see him sick it is, again, a good thing that there seems to be a REASON for his hyperammonemia on Sunday morning. His little body was fighting the virus intruders and he became citru-sick from all the proteins flying around inside of his system. Remember, in all of this…the doctors want answers and “we have no idea” is never an answer that works in our favor. I do not know why he has weathered colds and flus at home sometimes without becoming citru-sick and why other times a simple cold knocks him on his butt but we can only make guesses. Perhaps it was the slight dietary changes we made after his well-visit on Weds. Perhaps the tiny increase in protein in his diet that was warranted due to his growth when coupled with the proteins made during his body’s fight to stop the cold virus just was too much for his urea cycle. We don’t know and darn it..the liver just refuses to send us a memo and inform us when it is going to act wonky.
For now, Corrigan seems fine if not just a bit uncomfy from his leaky nostrils. He is eating well and playing…he does not seem sleepier than normal and I am happy to be home with the family. It is WAY better to be here wiping noses and sweeping up dog hair than away from friends and family with a sick baby tethered to a hospital bed with wires, wires and more wires.
My computer is still out of business…so no photos again. There has been little time to make the long tech support calls that are surely going to be needed to get it up and running again. Business is finally picking up a bit for Mark (thank God!) and he is working those phones dead everyday! I can barely find time to post this blog let alone try and translate tech-speak to layman’s terms to try and fix it myself…so it sits there mocking me with it’s sleek design and alluring blue lights…tormenting me with it’s refusal to tell me if it is ever going to give me my photos back. I cannot sweat that stuff right now anyway…the small stuff. It’s all just data and pixels. The important stuff is down the hall, wiping his snotty nose all over the comforter hanging off the side of my bed.
Anyone want to email me a box of tissues?