Whenever I would mention, to Corrigan’s team, how many months it had been since he were last “citru-sick” they would stop me from speaking with lots of “shush’s” and whisper, “Don’t say it out loud.” I would laugh and tell them I don’t believe in jinxes and smile confidently. I wanted them to celebrate his stability, or at least acknowledge that we were having a good stretch. Is that too much to ask?
Oh wait. Did I just post a honker of a celebratory post this week, cheering loudly that we had reached the two-year anniversary of zero hyperammonemic episodes and then, days later, my little peanut got violently ill and was hospitalized for hyperammonemia?
Yep, jinxed it.
Around 4:30 am, on Wednesday morning, I woke to the sound of Corrigan crying. When I went into his room he had vomited twice and was still retching. I took him downstairs where he continued to vomit until he stomach was completely empty. I felt disoriented and frightened. We had just gone 733 days without a moment like this and my instincts felt dull from lack of use.
We ended up in the ER a short while later and his first labs came back with an ammonia of 97. Normally, our team begins rescue meds when ammonia is 100 or higher. There were calls from our ER doc to Hopkins on what the best next step was and while I appreciate the desire to follow advice from our Baltimore team, way too much time was passing by as Corrigan was getting sicker and sicker.
By the time the D10 arrived he was actively vomiting every few minutes, despite two doses of Zofran. His tummy was totally empty so his vomiting was incredibly painful for him, even as he fell asleep from exhaustion, he was throwing up in his sleep. It was the most pathetic thing I have ever seen.
His repeat labs showed his ammonia had risen to 155 and then things started happening quickly. There was some uncertainty if they would ambulance him to Baltimore or not, since past protocol was that he could stay locally for rescue treatment as long as his ammonia was under 150. Again, a close one.
They decided to see if his number dropped after a 90 minute bolus of rescue meds and thankfully it returned to normal levels in that very short amount of time. We were spared the transfer and moved to pediatrics. Corrigan was lethargic and still nauseated by the time we got into our room but completely lost his mind when we tried to put him in the hospital crib. Another nurse and I later discussed how badly he freaked out and likened it to a cat leaping out of a tub full of water. He didn’t care if he broke his neck, he was screaming, scratching and clawing and nearly hyperventilating. His heart rate went through the roof and his eyes were wild with fear. It was horrible to watch. I asked for him to be put in a regular bed and had to sign liability-release paperwork in order for that to happen. I was not allowed to leave his room at all. He was calm when they placed him in the regular bed.
His ammonia stayed stable, in fact it was eventually as low as 18 (his “normal” is in the 40’s) and his other labs did not show any infections or anything so we are unsure what brought on this crisis. He was incredibly exhausted from his hours of vomiting earlier in the morning and fell into a deep, 4 hour nap.
The pediatrics team was not willing to stop his rescue medicine in order to draw repeat ammonia’s through his port, so they did a regular stick in the crook of his arm. It was the first time, since he was an infant, that we used anything other than his port for a blood draw but they got it on the first try and Corrigan was upset, but not terribly so. However, hours later when they wanted to grab another ammonia, they were confronted with a child that was frantic over the idea. Thankfully by then it was evening and Mark was there. Though Corrigan was so panicked that it took all of Mark’s strength to restrain him and when it was all over, we were all in tears. We were also sweaty, scratched to pieces and so heartsick to see how these hospital moments were affecting him.
In between those few ugly events, he was such a good boy. I was worried about how I would keep him in that “adult” bed and prevent him from ripping the tubes from his chest but he was relatively easy going about it as long as I sat on the bed with him or, when he was especially frustrated, I would lay beside him and stroke his hair as we watched TV. He was sweet to his nurses otherwise and wanted everyone to hold him. He sang the alphabet song to anyone that would listen and he slept like a champ through the night.
I was still in my pajamas and neither of us had combed our hair. We were quite the sight, for sure, but it was such a relief that he still responds so amazingly well to the rescue meds that I didn’t care too much. Thank God I had two boxes of Tic Tacs though. ha.
A few weeks back, I was in bed and unable to sleep. I was thinking about Corrigan and hospitalizations when it occurred to me that maybe the rescue meds that were at our local hospital had expired! What if we needed to run him in only to find that they could not use the medicine?? What if they would not re-order new meds to replace the expired ones? I wouldn’t blame them, they hadn’t seen us in years, and the Ammunol is super expensive. Thankfully, my friend is an ER nurse and she made a few calls. The one medicine was due to expire this August, she told me, and the other did not expire until January 2012.
We needed it in perfect timing. A few more weeks and we might have had a problem on our hands. Now that he has used it up at this visit, they will re-order more without question and that worry is off of my shoulders. Because this was our first time being hospitalized since our two hospitals merged into one brand new facility, I had some concerns at how it all might go down. Like I mentioned before, I was feeling rusty and out of sorts, but my friend Stacy told me that it was just like riding a bike, it would all come back to me and it did. Every single person I talked to mentioned that I should be a nurse.
The irony is that the one thing I knew I didn’t want to be “when I grew up” was a nurse. I do not have the patience, and people skills, that I see in the nurses we deal with. I could not handle watching others in pain, deal with the daily abuse or handle the long hours. I am also pretty terrible at math, but my goodness, I admire those that take that job on with such desire to help others. I’d rather not know about IV solutions and how to access a port in my child’s chest. I’d rather not have to be the “expert” on this disorder. When they are all deferring to me, when the pediatrician himself leaves notes to “trust what the mom says, she is the authority on this”, it scares me to death. I don’t want to be the authority. There is so much that I do not know, or understand. I want someone else to make confident decisions to help my child. I appreciate, sooo much, that they do not fight with me when I make suggestions. I am humbled by their respect but it is terrifying to me, especially since I was not feeling so confident this time around.
We ended up home in a day and a half. When we were discharged, Corrigan walked out of the unit holding my hand and exclaiming “BYE BYE, ZEE ZOO” (bye! see you later!) and even stopped to tell the man who was painting the hallway “goodbye” too. However, a few hours after we arrived home, Corrigan was vomiting again. He has an arginine sensitivity and the arginine was at an increased level in his IV bag so the thought was that he needed a day or so to let his nausea subside a bit so we are doing a slow 24 hour feed of only 60ml per hour. We are trying this at home to prevent a return to the hospital. This morning he woke with color back in his cheeks and has not vomited at all. He is bruised up from needle pokes and his poor torso looks awful from the sensitivity to the medical tape but he looks good!
Before I wrap this up I wanted to share this weird little story with you. Last weekend, Mark and I were cleaning out the guest bedroom and things were turned a bit upside down. I had the hospital bags in that room but didn’t pay much attention to them. Later that evening Corrigan came down the steps with the Emergency Room bag trailing behind him. He brought it over to me, while I was sitting on the couch, and started rooting through it. At first I told him he couldn’t but when I saw some of the shirts he was tossing on the floor, I realized that nothing in that bag, nor in the others ( I have one for the ER, one for if we are hospitalized, and a suitcase if we are transferred out of town) would fit Corrigan any longer.
The clothes in the bag were size 24months and he was now in a 4T. For some reason, instead of tossing the bag aside and dealing with it later, I went through his closet and found some “new to us” hand-me-downs (Thanks Connie!) that were exactly the size we needed now and re-packed the ER bag. I changed out the smaller diapers for the size we currently need, I updated some of the other stuff and then stuffed the bag in the downstairs coat closet.
We needed that bag five days later.
I do not believe that it was an accident that Corrigan schlupped that heavy bag downstairs and put it in my lap. I also don’t think that it was an accident that I got my big lazy butt off of the couch and repacked it all that moment. We were being gently guided and I am thankful. In the chaos of Wednesday morning, it was a relief to simply reach in the closet, grab the bag, and race to the ER. I needed every single one of those outfits for poor Corrigan, due to his vomiting, and the hospital did not carry the size 6 diapers that we needed-but I had them in the bag too.
I am back on the bike now, and sadly that means that my anxiety is back full force, but it was a good run. Two long years. Here’s hoping we get another two!