The usual Christmas crisis (blog post for my records)

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(sharing a Coke with a friend)

    Well, he did it once again…a touch of hyperammonemia the week of Christmas, his consistency is pretty admirable!  By my count, and help from the TimeHop app, Corrigan has been in the hospital the week of Christmas,  or the days after, for four out of six years of his life, I suppose he really likes those donated Christmas toys they hand out or something!  He hated being there, but he liked the racing cars, construction cars and cool puzzle that he was given!

For my notes, I will recap…

His school called me on Friday afternoon, after three of the staff that works with him all reported that Corrigan seemed very “off” and after confirmation from the classroom teacher, who used the word “distraught”, I headed over to get him.  They reported that he was pulling at on his teeth, so I took him straight to the pediatrician for a rapid strep test that showed a positive result in just minutes.  With an antibiotic prescription in hand, we headed home but on the way he began violently vomiting, so right to the hospital we went instead.

(Edit: How lucky are we to have staff that is so attuned to Corrigan’s personality, and noticed that his agitation seemed different than his normal level of agitation, and that because they spoke up, his brain was spared several more hours of attack?)

His levels were high at 162, but as usual my boy responded amazingly fast to the scavenger medicine and within 90 minutes his levels were pretty close to normal.  He remained on that drip for the day and his numbers fluctuated a bit here and there but he spent Sunday at home and is nearly back to normal!  The best part, aside from the fact that I have a kid who responds to treatment so quickly, is that we were able to stay hospitalized locally instead of transported by helicopter or ambulance, a HUGE change from two October’s ago, when the ER doc was an egomaniac and lifeflighted a child with an ammonia of just SIXTY downstate. Ridiculous then, and mind-blowing now, but that is the risk when dealing with ER doctors that are only floating in the ER for a few weeks before they move onto the next facility. There are no longer doctors that are familiar with Corrigan, but thank God for the nurses and other staff who go to bat for Corrigan, speaking up on his behalf and help the attending physician better understand his specific case and how he is best treated.  The doctor this time was kind, willing to learn and helpful, the emergency protocol is such an important document for a child like Corrigan. It is sort of a “recipe” for his care, and it eliminates the panic that I sometimes see in a doctor’s eyes when I walk in with this kid who should be drunk on ammonia, but is instead hanging out quietly and oblivious to concern.

Staying local is always such a blessing. Even though I have my Dad and Step-mom close by when we are sent to Baltimore, there is just something…and I can’t explain it…about looking out my window and seeing familiar mountains and landmarks and knowing that my bed is just ten minutes away…and that the local Cavalry doesn’t have to battle the traffic and parking that my poor Daddy has to deal with just to bring me a sandwich and a hug at Hopkins.

Speaking of our Cavalry, hospital time leaves lots of time for thinking, and by my best guess, Corrigan has been admitted for hyperammonemia roughly 20 times in his life.  I was thinking about the people that consistently show up time and time again in these circumstances.  There are nurses that always poke their heads in to say hello and offer hugs when they see Corrigan’s name and friends who know me from outside of the hospital but work there and still make it a point to come down from housekeeping to talk to me for hours. Staff that remember the things that he loves and search the hospital for bubbles or beach balls or coloring books. My Dad, well there is just no way I could have remained as sane (ha!) as I have in the last years without his willingness to drop everything for Corrigan and race to the Hopkins ER to meet the helicopter or ambulance.  My step mom, Mindy, who always packs the PERFECT bag of things she thinks I might need in the hospital and even though I think I keep a pretty tight and organized hospital bag, she ALWAYS has a few things in there that I can’t believe I never thought of.  And then there are friends like Mary Anne (Happy Birthday TODAY, Mary Anne!) , who race to the ER in seconds when she gets my text, and has even driven downstate to get us home after discharge. And yet even others that order us food for delivery from all of the way up here in Western Maryland, so that we don’t have to eat hospital food for yet another meal. And even more friends and family that run over to take care of our pets, or check in on Connor!  Family have driven in from Virgina and Deleware when he was very very sick, just to hold his hand and be there. There are the Grandparents who lift us in prayer and start prayer chains and friends online that share my statuses asking for even more prayer, who send me messages in private but know that I have my hands full with Cor and can’t always reply, and never judge me for it. Oh, and nurses like the one that ran to the supermarket to get something for Corrigan that they didn’t have in the building, how awesome is that?  I’ve also realized that in 20+ hospitalizations, 98% of them beginning here in our local ER, there are a few faces that I have never see, not even for a few minutes, walk into Corrigan’s room and that was a big lightbulb moment for me. People are busy though, I understand that.    (Edited: You know, I re-read this and it is just like me, you know, to say something like, “hey some of you have dropped the ball, but here is my excuse for you” and you know what? I won’t lie, my feelings are hurt and I am tired of spending my life smiling and pretending things are okay. It isn’t okay.  and I don’t know why I never realized it before, or why I only realized it now, but I have and it sucks. I mean, not once?   We aren’t worth 5 minutes? )

Okay, so that was a weird paragraph, I know. I just wanted to acknowledge the people that are always there, whether it be 2am or two days before Christmas and know that I owe you one. No, I owe you MORE than one, I owe you a million. You make it all bearable and a hell of a lot less lonely.

So back to Corrigan, that kid is amazing, as you already know.  However, he was not feeling this hospital stay at all. This stay was far different than any stay in a long time, but I believe that is because he is used to Johns Hopkins. I think that when he is there he knows the location, recognizes the nurses, remembers the paintings on the walls, and being sick at Hopkins is what he knows.  He hasn’t been allowed to stay locally in almost 2 years, so he was totally out of his normal element and didn’t recognize where he was.  He spent a lot of time repeating “I fine!” and pointing at the door to his hospital room, begging to go home.  I am so thankful that his stay was brief because keeping him in bed and happy was a tough job this weekend.  But even still, he was polite, kind and used his manners frequently without prompting.  Hearing my little boy say, “I thank you!” to a nurse who just stole two tubes of blood from him, is one of the most bittersweet sounds in the world, you know.

But hey, he is home, doing great and nearly back to normal! Despite that ammonia number being far higher than his baseline, we didn’t see too much of a neurological change in him this time, both in the midst of the crisis and now afterwards, which is wonderful.  He seems bright, sharp and completely normal, which is a tremendous blessing!  On the evening that he was admitted, he had just fallen asleep in the ER before they came to move him upstairs, so when we left the darkness that he prefers in the ER room (ammonia headaches, ugh), to the brightly lit halls, he immediately pulled a blanket over his head.  When he was rolled into his room on the 6th floor, he woke up, looked around and asked “Santa Claus?”

Christmas is ALL that he can think about this year, and I am so glad that he got that little bump in the road out of the way so that he can enjoy all of the magic of Christmas in a few days. He is so ready.

Speaking of TimeHop….here is a photo from six years ago today. D’awwwww, Daddy and Corrigan. Mark still wears that sweatshirt and those blankets are still on my couch.  Creatures of habit, we are.

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