Well that was a rough ten days. Whew.
Corrigan has been home for a few days now. I apologize for not updating sooner, we have been settling into a new routine here that involves more pump tube-feeding than Corrigan is used to (I usually gravity feed him instead of using the actual machine) so I have to entertain him through five long, immobile feedings per day for another day or so,
The frustrating truth is that we may never know what exactly happened to make Corrigan so sick. There is some evidence that his protein levels were very low coming into this illness, yet we had no vomiting leading up to the sick-event and hadn’t missed any protein/calories on my end.The g-tube makes getting exactly what Corrigan needs into him easy, so if he is not eating well by mouth on a given day, I simply make up the difference through his tube. He hasn’t had a growth spurt, so far as we know and was recently seen by his team, so I have no idea how those numbers tanked but it likely contributed to how quickly he tumbled into a crisis.
He was also dangerously anemic, and again- no one can tell me why that happened, but there is a virus that can affect those numbers and is suspected as the viral part of his crisis-cocktail. The blood transfusion worked wonderfully and though I didn’t see results as fast as they told me I might, within two days he had some pink in his cheeks and his energy was returning. However, from all of the blood and fluids, he put on more than 11lbs in two days and I won’t share the photos here, but the ones I were sending home to Mark were alarming. He couldn’t even smile, he swelled up so much in such a short period of time.
Now that he is home, he is recovering quickly. There is just something about being in familiar surroundings to help that process along and while he isn’t really taking the stairs on his own quite yet, he is getting up off of the couch frequently and playing. I had asked transportation to stop sending the bus for this week, and was not sure if he would be back in school next week or not, but he is improving fast enough that I think he will be ready for next week and I have let the bus driver know.
The doctors always told us that while Corrigan’s immune system isn’t likely weaker than a normal child’s, the effects of even the most simple of viruses and infections could cause greater problems and hang on far longer. That definitely was the case here.
I’ve never seen him sicker, aside from his neonatal crisis, and never more scared since I brought him home at 17 days old. At one point he had six medicine pumps on his IV stand and leads on his chest to the monitors-he was weaker than a kitten and breathing so rapidly, it’s just crazy to me that another child, one without an underlying metabolic condition, might have just had a few days of fever and a rash, but Corrigan was in such terrible shape.
This was our first stay in the the new Children’s Hospital at Johns Hopkins. Five years ago, when Corrigan was first born, there were giant schematics on the walls in the lobby at Hopkins that outlined the new Children’s hospital. “Opening in 2012” seemed like a lifetime away at the time, but the years have flown by so quickly.
* The Life-Flight from our home hospital to Baltimore was a total shock. It was probably naive of me to think that those days of rescue helicopters were behind us, but we have had two really long stretches of stability in the last five years and the other times he has needed moved, ambulances have done the job just fine. I thought those rescue copters, in the past, were because he was so little and in danger of decompensating so much quicker, but clearly that is possible at any age and the nurses literally only gave us 46 minutes notice that the bird was on the way for my boy. I didn’t expect to cry so darn hard when it flew up and over the mountains in front of me but wow, I was a wreck.
* I have the most polite little man and I didn’t even know it. We have been working on “please and thank you” since he was a baby, and he has been using them well for years, but during this hospitalization, he would thank the nurses without prompting and even when he was so parched, lips cracked and bleeding, would croak “I’m firsty. Pweeze?” There was a security guard at our local hospital whose job it was to make sure traffic stopped as the helicopter rose from its landing pad. I had ran to the edge of the road to record the flight. I knew how much Cor loves helicopters and would want to see it later, and as I was recording, I was crying hot, fat tears. The guard, when the bird flew away, came over and said “Is that your little boy? He is so cute” and when I nodded my head without word he said, “and so polite! When they wheeled him past me on the stretcher he waved at me and yelled “Goodbye! Thank you!”
That’s my boy.
*11lbs of fluid weight is startling. I had no idea he had put on so much weight, he just looked so puffed up, but when we needed to change his bed at one point, and I went to scoop him up quickly, my poor back instantly realized what 11lbs felt like. Wow.
*When your child pees off 6lbs of fluid in one day, well…your day revolves around urine. And when that child is hooked up to 6 lines and is only 1/3 potty trained and the idea of a bed pan is so far-fetched you laugh yourself stupid, you rely on diapers.
*side note: There are no diapers that can contain that amount of pee.
*I’ve said it many times over the years, but there is a clarity that comes from Ammonul (rescue meds for his disorder) that cannot be compared to his regular meds. While his ammonia never got super high, it was crucial that he stay on Ammonul while he was fevered, and while it wasn’t a huge hourly dose, a drip really, I still absolutely noticed how clear and fast his mind was working by the end of the week. His ammonia labs were coming back at 17, and we have seen numbers that great on Ravicti too, but his brain at 17 on Ammonul is different. I think I could have taught him calculus on Saturday. After someone gave me some Ammonul so that I could understand calculus, that is.
*The helicopter landing pad was directly outside of Corrigan’s hospital window. Maybe 250 feet away and two floors up, I had a front row view of each and every landing there last week. On Thursday I counted thirteen rescue copter landings. In the subsequent three days, there were two. What on God’s green Earth happened on Thursday?
*Nurses are amazing human beings. Many of the staff in the new unit are new-to-me nurses and, at first, I was bummed to recognize so few faces. Over the years, the old staff at the old building became so much like family, but the nurses on the current unit are just as dedicated and compassionate as any I have ever come across in my life. There was not a single nurse error this week. Zero. They were on the top of their game.
*In the hospital, Child Life Services brought by a few toys for Corrigan to play with, but he only felt well enough to play the last few days. I had requested a doll house, because his therapists all use them to help him learn Life Skills and they found a Fisher Price one for him, as well as a huge firetruck and a magnetic board that had dozens of magnetic letters and numbers. He was perfectly happy with those three toys for the last 3 days of his stay.
However, when he came home, it didn’t take long for him to be irritated with his toys, and honestly, it seemed as if he were overwhelmed by how many there were. Too many to choose from maybe? There’s been a lot of half-played-with messes and toys thrown in anger and frustration since he has been home.
*My husband can clean a house! When I walked in, I was stunned. This place sparkled. There was not a dish in the sink, all of the wood was not only dusted but polished. It smelled good in here, which is tough with our stinky old dog around, and it was such a relief. He probably shouldn’t have shown me what he was capable of…the cat’s out of the bag now!
*I miss my bed. Corrigan was working on something respiratory at the start of the week, and I don’t know if all of the crazy antibiotics helped keep it from turning into something ugly for him or what, but thanks to the ten times he coughed directly into my eye membranes ( I love you, baby!) I have a roaring case of bronchitis and am unable to sleep in anything more than a metro-train nap position…straight up, head back, snoring like an idiot. Oh, I keep trying to melt into my bed, but minutes after I go horizontal, I hack up a lung and I need to move to the couch. This all just feels like insult upon injury to me.
But hey, it is only a smidge of what brave Corrigan had to deal with last week, so I am trying to keep my complaining to a minimum but ugh. I feel like poop.
So there’s the wrap-up. Mystery illness, crazy hospitalization, home recovering. I am so thankful for modern medicine, truly I am. I am also thankful for the thoughts and prayers, phone calls and emails and meals that you brought to Mark and Connor in my absence. And for those of you that came by to celebrate Connor’s 16th birthday while Corrigan and I were downstate…thank you for trying to keep things normal for my biggest boy.