After being gone since Monday, Daniel is finally back. It was nice to be able to get away from the hospital for the first time since Monday. I did come over to the Ronald McDonald house yesterday, but just to get a shower and wash clothes. Today I took the twins over to the Ymca and we all got to get a little workout in. It was much needed.

Mylin continued to have a pretty horrible night last night. They were in so much pain. The pain was also making blood sugars skyrocket. On top of that, our CGM is having a ball with reading 20 to 30 points higher than the blood sugar actually is. This made for lots of extra calls to the nurses station and extra finger pokes. I don’t think neither Mylin or myself ended up getting much sleep until 4 AM. Even then people are in the room about every two hours. Like I said by 7 AM it’s pretty much nonstop. I had finally fallen asleep for just a little bit and then our surgeon came in for the first time in a few days. I could barely wake up. With Mylin’s blood sugar alarm going off all night, it’s a different kind of big startled awake. You’re not only woken up out of nowhere, you have to pick up your phone and login and focus enough to take it all in. Then as I said in a previous post, nurses shake me awake to ask me to see the CGM numbers or to make changes to the insulin on the pump. I always feel so fumbling trying to get Mylin’s passcode into their phone and then the passcode again as it tries to scan my face to see if I’m Mylin twice before it actually lets me put in the code. It’s a lot for the middle of the night. Then there’s the part where you have to make. Basal or Bolus changes and really make sure you’re on it. I will say the hospital does a double check so they have true nurses check the information put into the pump. There was an interesting situation this morning, where I was woken up and asked for the pump app on the phone. It was a new nurse. I’ve never met before. She told me that they were going to do a bolus and a carb correction. I said oh did Mylin wake up and eat those chips from last night? She assured me that Mylin had not eaten the chips. I was like oh where are the carbs coming from? She told me they were coming from the feed going through mileage G-tube. I said did you add more than usual? She said no it’s just the usual feed so we carb correcting for that and I was like I don’t think you need to do that. The other nurse was like wait yeah what? Then I explained that we are still on manual mode and we have a basal dose on board to deal with feeds as they come. I was so glad I caught her because the amount of insulin she was about to program the pump to give was five times the amount that was needed for just the blood sugar correction. That stuff is so scary!

Mylin woke up still in a lot of pain then and pretty nauseous. By the afternoon, some of that had lifted, and they were able to have a little bit of a lighter energy about them. It makes the whole room feel lighter. Blood sugars have still been bopping up into the high zone before coming back down to a little more normal and then hopping back up to high. They think the pain is what’s causing that too. I asked the doctor about the situation with the bench yesterday and how that caused all of this pain. He said they probably just pulled something that hasn’t been used to moving or you know just a more minor tweak that hurts quite a bit more with everything else they have going on right now and the surgery recovery.

I used a rinse-less shampoo cap for the first time. We were laughing all the way through. Mylin said it was too bad. They didn’t still have their walker to be the perfect accessory to go with their little granny cap. That kid cracks me up. I was impressed with how genuinely clean hair actually looked afterwards!

We did our nightly walk, and Mylin couldn’t even make it to the end of the hallway before being an excruciating pain. A really nice security guard happened to catch onto what was happening and offered to run and get us a wheelchair. Mylin had to be wheelchair the rest of the way back to the elevator and back into the room. When I left a little bit ago, Mylin was in tears again with pain. I felt bad, because I was trying to get them to laugh. I got one smile and when I tried again that’s when they started crying and said it hurt hurts to laugh and I’m in a lot of pain Mama can you just not right now? (It sucks because there’s a lot of times I can lighten the mood by getting Mylin to laugh. Just yesterday when we were changing out the insulin pump and the sticker was pulling really hard to where Mylin was in pain, we were laughing so hard. We were just being totally goofy to where the nurse said I can’t tell if it tickles or if it hurts. I told her we are just weird and this is what we do. We kind of laughed through the pain.) It was bedtime anyway and I thought it was probably the best time to let Daniel’s calm energy take over.

Daniel starts his 24 hour cares tomorrow. This means he’ll call out every time. Mylin needs a blood sugar check. He’ll be in charge of putting bolus and basil adjustments (with nurses to double check after he does the input of info). He’ll have to help guess the carbs. It’s a really good way to prepare for going home. We will also do our GI 24 hour cares either tomorrow or Sunday. They already gave us the information pamphlet on that, and it definitely sounds like no sleep. There’s a lot of things we have to do leading up till midnight. And then after that, there is medication every two hours and finger pokes every three hours. There’s a whole list of medicine and where it goes whether it be by mouth or through the J tube and then how you have to flush the J tube. It’s literal pages of information. It’s a bit intimidating, but I know we’re up for the challenge.

It’s been an interesting day in Ohio. We got to live out the worst air quality in all of Ohio history. I love being on the 11th floor for that reason. We got to watch the smoke slowly, kinda come in through the trees yesterday. Then this morning we saw it completely hover over the city even to the point where you couldn’t see the freeway and you could barely see the beautiful church in the distance. Stepping outside, not only hurt your lungs, it smelled like there was a campfire in the distance. Then the storms rolled in and they pushed the smoke out. It’s a thunder and lightning storm out right now. I told Daniel I’m so jealous that he gets the 11th floor view of the storm. The twins and I had our blinds open for a little while just watching some of the big lightning.

We’re closing up shop now and I’m hoping for a really good night sleep for the first time in a week. I had a heartbeat in my head almost all day from either the lack of sleep, all the smoke or combination both.