I should be asleep. It’s bedtime. Everyone else in my house is asleep. But my mind doesn’t want to rest right now. It is running from one topic to another to another and I finally decided that rather than hiding from blogging what’s on my mind, I’m going to dump it all out here in one cathartic rant.
My baby is turning three on Monday.
And turning 3 means that this week is his last week of early intervention. Today the last therapist came to our house that they will ever send. Tomorrow will be his last structured play class and then Friday will be the last of Musikgarten. We’re taking gifts to his classmates tomorrow and the Friday.
It is bittersweet to be saying goodbye to therapists who have become friends and allies, who have gotten Patrick from barely rolling over to an active, happy little boy who 95% of people don’t even know struggles as much as he does. It is scary to feel like we’re starting over.
It’s really a positive step forward. Last week Patrick and I went and spent the morning in his preschool class. It was amazing! His teacher is so kind and so knowledgeable! She is determined to learn how to take good care of him. And Patrick’s face just lit up with excitement as he got to sit with peers and listen to stories and sing songs and do crafts.
He is going to thrive in preschool!
So long as we can keep him healthy. And that is the one scariest part for me. Patrick had follow-ups with 3 of his specialists last week. And so I spent the first part of last week drafting an “Emergency Care Plan” for his doctors to sign off on that would summarize every scary short-gut related emergency that Patrick could have and how the school would need to respond to it. It was 10 pages long. It could have been longer.
And I made a list of everything that I do for Patrick during the time that he is in school so that the doctors can write orders for the school nurses (There are two on site at all times at this school) can do those things for him. That was 4 pages long. I think my assembled notes and new “Care Notebook” are over two dozen pages.
I have one meeting tomorrow to try to cover it all in. And all the pressure of worrying about setting appropriate IEP goals, too.
But mostly, I’ve been able to hide from that. We’ve had enough else going on.
For example, on Thursday morning, I was rushing to get Patrick to an appointment with his surgeon. And, in the blinding, rising morning sun, another driver didn’t see me. We were both going under 5 mph and so the damage is minimal and the other driver does body work for a living and will repair it. But it’s one more thing.
And on Monday morning, while treating diaper rash, I used some stoma powder.. only to have Patrick’s eyes swell up and him start to sneeze. And then while I was looking for what could possibly have caused that reaction found several articles linking severe cashew allergy with pectin allergy. When we saw the allergist for Patrick’s flu shot (Which took 3.5 hours to get!) I showed him an article and asked about it and he said that there was no standardized way for him to test for a pectin allergy.. but that I could probably safely assume that Patrick is at least allergic to inhaling pectin powder. So now I’ve added pectin to the list of possible allergens for Patrick. And have virtually no idea what that will mean.. except no stoma powder. Which I can live with. Until after transplant when he needs a stoma.
And then, because of a bunch of other crazy circumstances, naptime got all thrown off yesterday so he slept into his TPN break. And when he woke up, he was screaming. But I calmed him down and thought things were ok. Until he started to lay on the living room floor instead of playing and whimpering. Thats never a good sign so I checked his blood sugar and it was on the low end of normal. So I gave him some formula.. and I called Brian and we decided to start his TPN early. And then his blood sugar had a quick spike, and then he was ok.
Until today when I got him up from his nap… and he was happy and seemed ok for half an hour, when he got really clumsy and was falling down a lot.. So I put him in the living room chair and ran to get his glucometer.. and walked back into the room to see him just topple head first out of the chair.. and then start screaming. He was ok. Couldn’t even find a goose egg. This time his blood sugar was low, but just barely out of the normal range. So I gave him more formula to drink and some bunny cookies and called his dietician.. Who wasn’t all that concerned, except that she said that a rapid drop in blood sugar could cause problems and to watch more closely. And she told me to start adding corn starch to formula and give it to him BEFORE he gets lethargic as his TPN tapers off. He’s got a mild allergy to corn, though, so I don’t know about that. But at least I’ll make sure he gets some formula and some cookies earlier…
And by the time I got off the phone, his blood sugar was back in the normal range.. But I didn’t feel any better because I don’t know why this is happening every day. It doesn’t seem exactly safe, even though i can stabilize him quickly and safely at home so far.
They’ll do a bunch of labwork on Monday. At least, I hope they will. So that hopefully we can get some answers. And I just realized that Monday is also Halloween and his birthday… and that will be interesting logistics. But we’ll make it work.
And, yeah, speaking of that… Monday is Halloween and his birthday! I have his Halloween costume. And I have some stickers I can trade him for the candy he’ll get trick or treating. And I have an undecorated hat box for a birthday cake, but can’t quite put my finger on how to decorate it this year. And some favors to go inside the box that may or may not correlate to the theme.
And I have a birthday video that I was supposed to get in the mail no later than today… except I didn’t.
Because on top of all of this, Brian was up sick all last night.. with a stomach bug. And today he has a fever. And that viral combination is a Short Gut family’s least favorite as it can mean bit gut complications and an admission if a fever appears. I was sick this morning, too, but it passed quickly, at least most of it. But my poor husband is miserable.
And I’m just praying Patrick doesn’t catch it. Because, if he does, then my attempts to plan for his birthday will have to be relocated to the hospital. Of course, maybe he’s already got it and that would explain his slow motility and crazy afternoon behavior this week. Or maybe it’s nothing. It needs to be nothing. Because Patrick deserves another birthday at home.. even if I didn’t plan a party.
But just in case, I’d better come up with a plan for and finish the cake tomorrow.
And I need to schedule 2 doctor’s appointments. And fill a prescription or two. And arrange to have my car fixed. And do my visiting teaching.
Can you see why I can’t focus? And why tonight it’s hard to sleep?
But I’d better sleep.
Patrick gets up at 6 a.m. That will be great for school. It’s not so great now.
Patrick Hoopes 