This morning, Corrigan awoke ill with his citrullinemia again. His initial ammonia reading at the ER was 322. Those of you familiar with “normal” ammonia levels probably gasped at that number. So did we. We prayed weepingly that God would remove the ammonia from his brain and prevent brain damage.
A few months ago we had a port put in his little chest to ease the blood draws. Today, however, they seemed to have many problems accessing that port. It took three attempts and IV therapy to get the blood to flow and when it did it was slow. We do not know if it clotted in two weeks sincel ast flushed or what…but we wonder if that initial high ammonia was due to the beginning problems getting that port to flow.
As the morning progressed, he became increasingly lethargic and eventually was unable to focus on anyone or anything. Subsequent ammonia readings after his 90 minute bolus came back at 283. We were very upset, as were the doctors, and plans were made to fly him out quickly by medevac.
I should have known that NOTHING occurs quickly in a hospital. I have rushed home to shower and pack up things leaving Cor at the ER with Mark and it is nearing 6:30pm. We arrived at the ER at 9am. No one seems to be able to tell me HOW this child is getting to Hopkins because the medevacs now say the weather is too bad to fly and the ambulance transport team from Hopkins was unable to get here until near 9pm this evening. WHY ON EARTH we can not just be admitted to the pediatric unit here, locally, is beyond me. I keep being told, over and over, that the local pediatricians are not willing to treat him here. They are afraid.
When Mark arrived at 5pm Cor’s ammonia came back at 129. I asked them to test him again because I would think it would be below a hundred…which, this morning, the local pediatrician on-call agreed that he could stay here, locally, if his ammonia was under 100. They will NOT retest. I am so frustrated and tired and now I have a three hour drive ahead of me and Corrigan has an ambulance ride down to Baltimore…when he will be considered “stablized” before he even leaves the building.
Cor’s breathing was very rapid as was his heartbeat earlier and it was cause for a bit of concern. Like a runner htat breathes quickly to get rid of extra CO2….Corrigan’s body will do the same thing to try and expel the ammonia. After a short while that seems to have ceased as his numbers continue to tumble lower.
Last time, 19 days ago, Corrigan was at a 50 before we left the building…and 23 hours later we were discharged to return home. I anticipate that again unless his little body might be fighting something unseen/unknown…because otherwise this mama is very exhausted…and I think that Daddy might have said some not-nice things to the doctor today…and with all of this foul mood running amock…we are prob. better being back home as soon as possible.
Thank you for praying…pray that Corrigan’s trip down is event-free and that he gets better very soon!