I wasn’t going to blog about this for a few reasons.
I changed my mind.
On Monday, Corrigan was having a pretty good morning. This following a rare “sleep-through-the-night” event the night before. When I awoke and realized that he had slept for 9.5 hours straight I was initially, well…a bit greedy…thinking, “I could have used two more hours!” I don’t think I will ever be caught up on the amount of sleep I have lost due to Corrigan.
A few hours after waking, Corrigan seemed tired again so, while slightly concerned that he was so sleepy, I put him back to bed around 11am. He slept until 1pm and only woke then because I went in to tickle him gently awake (he had slept through lunch!)
At his next bottle feed I decided to try the pump again so that he could get outside and get some exercise. We walked the entire 60 minutes that his pump was set to run. At one point we talked to the neighbors for a bit, he made friends with a neighbor’s year old grandson and did a face plant on the sidewalk.
Immediately following his pump feed, once indoors, he fell asleep again.
At the 2nd nap he was zonked (not the above photo…all photos were from third nap) and I went in to wake him after about 1.5 hours. At this point I was getting a strange, uncomfortable feeling in my stomach. Corrigan barely naps once a day. Not twice.
Monday was also Mark’s first day back at work in nearly a year. Old job. New location. I didn’t feel consciously anxious about Mark being nearly 40 minutes away (and with our only working car which isn’t our car anyway) but by 6pm I knew I needed another set of eyes to check out Corrigan.
Remember, lethargy is a sign of increased ammonia which, as I am sure you are sick of hearing, can cause brain damage, coma or death within 8 hours if left untreated.
I had made a big dinner which we all ate, once Mark was home, in peace and quiet because Corrigan was asleep. Again. *cue Mama freaking out at this point*
He had fallen asleep, just moments before Mark walked in the door, on his beanbag. He looked uncomfortable so I moved him up to the couch but put the beanbag on the floor next to the couch in case he tumbled off.
We ate our dinner and then I wanted Mark to try to wake Corrigan…to see if he found him “difficult to rouse.” We picked him up from his beanbag and moved him to the couch. We propped him up, we gently tickled his feet, we sang his favorite dancing songs and the most we got was this…
It just didn’t make sense that he would take three naps in one day. We were one week from surgery and I was worried. Maybe he had some sort of infection ( though no fever?) from the procedure. Maybe his little body was making all of these extra proteins fighting some sort of hospital-acquired super bug and ammonia was multiplying as we were talking?
We decided to err on the side of caution and take him to the ER to have his ammonia levels checked. Of course, by the time I finished running around gathering up ER supplies and re-packing the hospital bag (that was not yet unpacked and re-organized from last week’s trip) he was up and running. Literally. Running. Laughing. Being totally normal.
Blah. I succumbed to my fear instead of my rational head though. I had watched him sleep, and woke him before his own body directed him to do so, all day. It was nearing bedtime at this point and when he acts strange before bed I feel the most uneasy. What if I lay him down, the ammonia is rising, and I shut the door on a tragedy? He would simply fall asleep and probably not wake. Ever. And I know that I can be slightly dramatic but that is for real with this disorder.
The uncertainty of this stupid, hateful disorder is one of the hardest things of all. I find myself wishing, all of the time, that they could just make an ammonia tester, similar to a glucose monitor, that would allow me to obtain a clean, fast-flowing sample of blood (at home!) and return a clear, reliable result in minutes. Instead, I am left to observing possible signs of impending crisis. Really clear ones like…too sleepy. Or, clumsiness.
*rolling my eyes*
Long, long story short, I packed up the poor kid. Took him to the ER. Exposed him to about 45 people who all looked like they were dying from the plague (the staff put Corrigan and I in an empty room so that we didn’t have to wait among the cootie-folk…they rock) and forced him to endure yet another round of blood draw/chest port access/being retrained by 3 people.
For an ammonia that came back 34. And blood labs that showed no infection.
Mom of the Year, I am.
All I could think, and yes I know that it wasn’t ladylike, was “suck, suck, suck, suck, SUCK!”
Everyone acted according to the emergency protocol. The staff worked quickly and took great care to make sure that Corrigan was a priority. He was fine.
This was the second time, since July, that I have taken him to the ER with concerns and had great ammonia results returned. My fear is that if I keep this up, if I keep getting this wrong, if I lose my instinct than I become that Mom that cried wolf. That maybe, over time, the staff will be less likely to jump to their feet when we walk in the door…that his blood won’t get priority at the lab…that I will be that mom, the one that can’t tell sleepy from lethargy.
When I was ready to leave, the doctor came back in and said something along the lines of, “It must be hard to never be able to put your feet up, have a cup of coffee and enjoy the fact that your child is napping…of never being able to let down your guard” and I wanted to cry. I wanted to thank him for summing it all up in a way that let me know that he understood why I was there. That he gets the disorder and all of the anxiety that it entails. That he understands that I would rather let my baby get some sleep but that I can’t. That I am not just being insane. That I can never ever relax because what if….what if…..what IF?!?!?!
I wasn’t going to blog about this. This second mistaken trip to the ER…mainly because I know a lot of newer Urea Cycle Disorder families have found themselves at this blog. Some are just reading and lurking and others have emailed and made contact and I want to be an example for them. I hated hearing the words, “you will know” from doctors when I would pleadingly ask them HOW WOULD I KNOW when Corrigan was hyperammonemic.
I had hoped that by year two we would have some sort of perfect grasp on this mess. That I would know Corrigan so well by now that there wouldn’t be a chance in Hades that he would have so much as gas that I wouldn’t know about. Yeah, missed that peptic stomach ulcer. Still can’t get the “is he, or isn’t he sick” thing right either.
All I want is to see this
and think, “Aww, how cute, wonder if he needs a blanket”
instead of, “Aww, crap. I wonder if his body is failing to break down that nitrogen and ammonia is hurting his brain”
This stuff is hard.
and I have no idea when it will get easier.
I need a hug and I imagine, so does Corrigan. Poor kid. Tough kid. What a life.