Here we go. Again.

You know how most kids start to get sick and so you put them in jammies, treat their symptoms and make them comfortable with cuddles and blankets until the yuckies go away?

Yeah, me either.

My kid gets sick and medical professionals take half of his blood volume for labs, after jabbing a 3/4 inch needle into his chest.  Then they pump his body full of strong rescue meds, throw him on a rescue helicopter for transport to a bigger facility and then he spends days in a hospital bed while everyone tries their darndest to get him healthy enough to return home. That’s just what happens when he has a fever and a bad return on something called plasma ammonia. Oh yeah, did I mention he always ends up needing to be cathed to get a urine sample and they almost always have to wake him up out of a dead sleep to do it? My God, no wonder the kid has trust issues.

So yeah, the second half of 2013 can suck it.

After an 8 day stay for Corrigan in July, an 11 day stay for Connor in September and this week’s stay again for little Cor, I am wiped out.  I am sorry but I have no more fake smiles and cheery platitudes to give.  I am sick to freaking death of my kids suffering and I don’t know who to punch in the throat about it.

Any volunteers?

Monday was my 39th birthday and I woke to a child that refused to open his eyes.  I dressed him for school assuming that he was a little bit tired from our Sunday leaf-peeping adventure but when Mark had to carry him downstairs for the bus, alarms in my head started clanging.  Outside, in the cool morning air, he roused enough but his eyes were glassy and he seemed manic.  Just as the bus pulled up for Corrigan, Mark turned to me and said, ” I don’t think we should send him, do you?” and I agreed.  He told the driver to go on without him and we went back inside to a screaming smoke detector and a house filled with furnace smoke.

Corrigan promptly forgot how to walk through a doorway and instead walked into a wall.  The alarms in my head suddenly were louder than those of the smoke detector. While Mark ran to figure out what was happening with the smoke, I was running to grab all of Corrigan’s lifesaving medicine in case my house was on fire and from a room away I heard Corrigan vomit.

He was citru-sick* , no doubt about it, I would have bet all of the money in my account that his ammonia was elevated and after grabbing my hospital bag and racing him to the ER, our suspicions were dead-on. I don’t really have the energy to go into detail about how the day went at our local hospital, suffice it to say it was a stressful one with many unnecessary decisions made without my permission or input, and Corrigan ended up on a helicopter, once again, to Johns Hopkins.

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(his little hand resting on the flight nurse’s leg for comfort. Ugh, my heart)

We only have one working vehicle, so normally when I race down behind the helicopter or ambulance, I leave Mark and Connor behind with no way around for food or errands, and Connor was in the last week of his marking period with many tests still to make up from his hospitalization last month, requiring him to stay after school. Not knowing if I would be gone a long time, I made the decision to live with what was in my smaller hospital bag and take the flight with Corrigan.  It was my first time in a helicopter and honestly, it was awesome.

Don’t get me wrong, it is NOT awesome to be flying in a helicopter because your baby’s brain is under attack and time is of the essence and all that fun stuff, but he was stable and sadly, pretty used to it all, so I kept one eye on his heart monitor and the other on the amazing view from way up in the night sky.

The night before he got sick, Corrigan slept 12 hours and was awake only 2-3 hours before he conked out in our local ER.  He then went on to sleep for the next 14+ hours straight.  I call this his “ammonia nap”.  He responded beautifully to a quick bolus of rescue meds (as always, thank God!) which was a relief because if I didn’t know his ammonia was no longer elevated, I’d have been having a stroke at how deeply he was sleeping, assuming he was slipping into a coma.  He was able to be roused and his pupils were reactive, but he would only wake enough to yell at whoever woke him and then he would flop back onto the bed and open-mouth snore for another few hours. It was disconcerting and way too quiet.

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(this is what an ammonia nap looks like. Taken over 14 hours. Looks relaxing)

We landed in Baltimore at 9pm and even though they were prepped for our arrival and supposedly had a room for him on his regular unit, I sat beside his bed in the Hopkins ER for another 5 1/2 hours. NOTHING at Hopkins happens quickly, I mean…unless you’re coding or something, but thankfully many of you kept me occupied (and sane) during my 16 hour (total- minus a 51 minute flight) ER bedside vigil with texts and emails.

He woke when we got him up to his room but even with a huge amount of sleep under his belt, he fell back asleep with me at 3:30 am and still slept until almost 8am the next morning.  Elevated ammonia is no joke, and while his levels were not “scary, scary” high when I first took him in, he obviously has very little tolerance anymore for much of a bump due to how well his new medicine keeps his ammonia controlled. When he was a baby, and on a different medication, his baseline ammonia was nearly double what it is now, putting him only a slight bump below the levels they would normally hospitalize a child with his disorder, but because he was used to hanging out in the 60’s and 70’s- we would sometimes not even know he was in a dangerous situation until his ammonia was far higher than it was this week. Now that his baseline ammonia is much closer to “normal” each day, not much more than yours or mine, his brain has no more wiggle room for increases and that’s a good thing.

This was also the first time since his first year of life, that he has had an elevation that was not due to a virus or bacteria. He had no infection, his labs were beautiful.  He didn’t have a runny nose or cough prior, no ear infections or strep.  He simply went to bed completely fine on Sunday night and woke up in a neurologically changed state.

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The upside to this week, if one were prone to looking for one, (and I’m not really in the mood to be all “here’s the silver lining, yay!”) is that absent from all other symptoms of virus or bacteria, Mark and I are able to tell when he is “just” citru-sick*.  You might not understand what a relief that is, but for us it means that Corrigan’s body gives us clear signs and Mark and I are attuned to them.  It was so much harder when he was an infant, and we had to guess his mental status based on if he were cooing more or less than usual.  I mean, c’mon-babies cry…but when my baby cries, his brain might be under attack. Or he just might be angry his diaper is dirty. Babies sleep a lot, but my sleepy baby might be slipping into a coma.  Babies horf up fluids, but my baby vomiting might mean he is in crisis.  It was so stressful, so many false alarms but we caught many events too.

It is different now that he is older and it is comforting to know that his signs are not subtle ones. He was extra sleepy, he wasn’t picking his feet up well, he was off balance, his eyes were glassy and his speech was hyper. He was laughing at silly things in a laugh that sounded different, almost creepy.  (He seriously laughed at the number 11 on one of the monitors for a good 5 minutes in the ER when we first arrived)  He still vomited, as he nearly always did when he was little and in crisis, which was good to know was still a good indicator, and a new sign was that he was rubbing his forehead back and forth on the couch when I brought him in from the bus stop.  Headache?

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It was a brief stay, thank goodness, and we were home by Wednesday evening.  I say “thank goodness” because I don’t know how I could have lived with the few things in my smaller hospital bag for much longer. I didn’t have stuff for my contact lenses, nor my glasses. I didn’t have a stitch of makeup in that bag, or even shampoo or deodorant.  I only had four quarters for the coffee machine and while I had a travel pill box full of Benadryl (??) I only had two pain relievers on me.  I get terrible headaches at Hopkins and this time was no different.  I was woefully unprepared, leaving my larger Hopkins suitcase behind, so that I could hop on the bird with my boy. It all worked out though.

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Corrigan was, as always, so well-behaved while in the hospital.  On Tuesday, refreshed from his 20 hour sleep adventure, he was a little antsy at the start of the day and I feared it was going to be a rough stay, but it didn’t take him long to understand that he was hooked up and not going anywhere, so he settled in like he always does and was just a spectacular patient.  He is so undemanding when in-house like that. Child Life is an enormous blessing to us at Hopkins, Caroline either remembers or takes notes, but she walked in that morning with all of Corrigan’s favorite things. Doll house, school bus, and building blocks, plus a great visit from the therapy dog.  So many eskimo kisses between Olive (the dog) and Corrigan!

I don’t know how he sleeps so well in hospitals, even when they ordered neuro checks every four hours, which required all of the lights to be turned on, he was good-natured about the intrusion on his sleep and promptly returned to dreamland when they left and closed the door.  He also practiced his social skills, and did a great job, by remembering to say “Good Bye” to people as they left the room and often waving, though sometimes his hand was backwards and he was waving to him own face. ha.  He was polite and calm and seriously, this is not what I envisioned when he was little.  Maybe it is because it is all he knows, so why fight it, but whatever the reason, hospital stays with Corrigan are pretty alright, especially when he isn’t puking his guts up from a terrible bug, or weak and needing blood transfusions like last time. It is actually a good chance to spend quiet, one-on-one time with a child who normally never stops moving and doesn’t like to stop to talk.  I enjoy hanging out with him and talking with him about the things we see on tv, or in the room and we grow even closer (if that is possible) during these stays.  On Tuesday he looked at me and, as clear as a bell and out of the blue, said ” I. YUV. YOU!”

gah, I could cry now remembering it.

okay fine, I am crying.

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Anyway, I suppose I am less angry as I have typed all of this out.  Uploading these photos and seeing Corrigan like this, well hell-it isn’t about me and it isn’t about life being fair. You know?  It is about doing the best you can with what you have been given and enjoying the good days. The healthy days.  There are far more healthy days than sick ones, even though recently it feels like the first part of this sentence is a lie, but modern medicine is amazing.  Connor is healed up from his abscess, Corrigan recovered super fast from this last incident and we are all home together again.

Also, my house did not  burn down. Apparently furnaces smoke when they heat up cobwebs and dust, so all is well.

*Citru-sick is a term I use on this blog to differentiate between illnesses like colds/flus/sinus infections/ear infections and when Corrigan is “sick” from his Citrullinemia.

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