It's Been One Long, Emotional Week at Home

It's been a solid week since HD was diagnosed with an incurable, potentially fatal disease. I don't think the reality of that has sunk in yet though. I'm literally acting as his pancreas. 

Honestly though, I feel like the mother of a newborn. I'm exhausted from waking up at 2:00am every morning to check his blood sugar levels. He had a low the other night, in which case I had to wake him up to eat some fruit snacks. But then I was awake at 2:30am panicking about him. Is he going to be okay? Is he going to dip lower before breakfast? How do you go back to sleep after that? How do you shut the worry off at night? All parents worry about their kids but my worry has skyrocketed in the last week. 

I feel overcome with worry throughout the day too. It's similar to the first day you take your child to daycare or have a babysitter over, leaving them in someone else's care. Newborns can't really get into trouble - they eat, sleep, and poop. But my 9 year old, he has a fully functioning brain that tells him he's hungry. Up until last week, when he was hungry, he could just go grab a snack, no big deal. But now it's terrifying to know he can eat when he's hungry. When he's at home with me, I feel like I can keep him safe, but when he's at school, I'm not there to be his food monitor. We've set up snack bins in the pantry, and in the fridge, with labels on everything. Snacks in this bin and this bin you can eat freely when you're hungry without having to get an extra dose. Snacks in these two bins, you can *only have one* between meals. It's helpful though it's not fool-proof, after-all, I'm working with a boy who often has trouble controlling his impulses.

We took him to school Monday after lunch because he was so excited to show his teacher and friends his wristband from the hospital and tell them all about his weekend. I took him into school Tuesday morning, with the assumption that his doctors had sent his medical orders over. They hadn't. He wasn't supposed to be at school without them, so after reaching voicemail after voicemail, I finally left a message for someone. It was frustrating having a list of phone numbers to call, but not being able to reach a person at 9:00am. I returned to his school Tuesday at lunch to give him his insulin and to get a few more things sorted out with the school nurse. 

By Wednesday morning, HD was feeling confident enough to GIVE HIMSELF his own insulin shot! Huge relief! The school nurse, for whatever reason, can't give him his insulin shot at school. I'm not understanding the reasoning. Only he himself, myself, Perry or a "parent designated adult" can give him his shots. I'm lost as to how to figure out who to designate as that person. I'm in an area where I'm still very alone and haven't been able to get a hold of the right person when calling the ADA. Luckily there are two other kids at school who also have T1D so the process of eating and counting and dosing are not new to them. 

He received his diabetes bear in the mail Wednesday afternoon, along with a bunch of handouts and books about diabetes. Along with his bear he received a practice needle of glucagon, his medicine we give him if he has really low blood sugar and is unresponsive. He demonstrated to Ms. Gail how it works, though JP found it all to be very boring, 

We were running low on test strips by Wednesday evening. I was not prepared for how much they were going to cost. The doctor still hadn't sorted things out with our insurance company so in the meantime, we were in limbo, and ended up needing to buy enough to get us through until our insurance was squared away. Unless you have a prescription for them, they are $80 for 50 strips. In a typical day, we'll use between 5 and 7. Yeah.... it'll last us about a week. I was able to *finally* pick up more insulin from the pharmacy last night. Ask me how annoyed I was about this... We were using the pharmacy at Safeway because that is typically where we shop, but our insurance carrier is requiring us to use a CVS pharmacy, so I told them we'd us the Albertson's near our house. Imagine my surprise when they sent it to the CVS pharmacy 25 minutes from my house, located in a freaking Target store. You know what that means?! A lot of impulse buys because, well, it's Target and I love Target. At least it's near-ish to my work, but still very frustrating for me. 

Once I had our insurance debacle somewhat figured out Wednesday evening, Ms. Gail and I took him on a hunt to find reading glasses. He mentioned the other day that reading was getting hard because the words were getting fuzzy. Common symptom. My mom directed us to the dollar store, since you know, they're only a dollar. He found an orange pair he liked, though the pickings were slim. I later found him some brown ones that look way cute on him at Ace Hardware. Who knew they'd have reading glasses for $4?!

I'm also struggling with how to calculate the serving size for the food he eats. This morning, I made buttermilk pancakes because Ms. Gail came bouncing into my room saying that's what everyone wanted for breakfast. She knew this because she told her brothers that's what they wanted. I took the recipe at hand and put it into a nutrition calculator to see how many carbs were in the recipe. We dosed him after breakfast because we didn't know how many pancakes he'd eat. He ate 16. The original recipe said it served 4. I'm living in one big word problem right now. Add this and this and divide by this but if x is too high, subtract this and add one for each of these and add it to the first  sum. Give him too much insulin and he'll go low, give him too little and he'll go high. 

I finally broke down crying Thursday night. The list of things needed to be done kept growing and I just needed help but I didn't know what kind of help. I needed to go grocery shopping, but first I needed to meal plan, but working until 4 or 5 every day has made that difficult. I was fortunate to find a box of mac n cheese in the pantry, but remembered as we sat down to eat that Ms. Gail had gymnastics that night. When we came home I found HD had homework and he *refused* to do. Writng is such a struggle for him. It would have taken 5 minutes, but we fought about it for over and hour and a half. The house needed tidying. HD's pile of supplies kept growing bigger and I needed to find a new place for it all. Perry has been working extra because his store is under staffed. By the time he arrived home, he's tired, I'm exhausted, and just overwhelmed with everything. The tears started rolling by bedtime. Uncontrollable sobbing in the corner of the kitchen. 

I just want to take this away from him. I know he'll be able to live a normal life but it still doesn't make it easier to digest.