My continued to be really nauseous through the night, to the point they kept the bag up at their face for a good portion of it. It sucks, because we really can’t pinpoint anything that we did differently that could have affected them so much. It was all stuff we have already been doing, but when I left for the night, they were too miserable to talk or hear noise at all.

Daniel finished his 24 hour GI Cares this late afternoon. He’s exhausted. Besides having to call out for meds every two hours (then wait a good 10-20 minutes till they got to the room), administering the meds, flushing the G-Tube, and checking sugars… they were chasing high blood sugars into the morning. The overnight feeds really ramp all of that up. We have a little booklet all stapled together of several pages explaining what meds at what times. It’s a lot!

The good news is that My is now eating and drinking enough calories that we get to drop feeds tonight! All nutrients is coming from actual food and drinks! This also meant that around 11am this morning, the insulin pump got to go on automatic mode. This is supposed to make things much easier (as we are already staffing to see, since our careful carb count somehow still made My low after the bolus. The pump had paused insulin knowing they were low, so the entire bolus wasn’t applied. Which would have made them even lower and in manual mode once it’s applied, it’s done.)

Mylin is still set to move out of here some time tomorrow. They are so excited to sleep in their own bed! I spent the morning with Lakyn packing up everything (It was a LOT, because not only did we bring a ton… we had to school shop while we are here. The girls start school August 6th, and with me working a lot of overtime to catch up AND flying back and forth, there just wouldn’t have been much time.) We got a decent amount of it in our allotted bags. I really hate to pay the exorbitant extra bag costs ($100! Please, that’s the price of a couple of pairs of jeans and shirts. Waste of money. Lol) We also had to disinfect the room to prepare for My’s arrival, because Eisley is really sick! We thought she just ate something weird a few days ago, and then yesterday it hit her hard. She couldn’t eat anything yesterday and was sweating like crazy. Then she has been hot and cold all day. Sweating and feverish. Better now than earlier in this journey, but still not great timing. We’re not suppose to have Eisley around Mylin at all right now. So we’ll make a delicate transfer of space tomorrow that includes plenty of Lysol. (Hopefully Eis is ok for the flights tomorrow. Ughhh with a 4.5 hour layover.)

My did feel good today! It was wild to walk into their room and just see them walking all over, not in bed. They have been up and about and even just sitting on the hospital couch hanging out with Lakyn, chatting and playing games. It blesses our little hearts.

Something I forgot to mention yesterday is that the carotid arterial line (the IV that went in through the side of Mylin’s neck into the artery there) finally came out yesterday! That thing was one of the scariest parts of after surgery!! It’s where many of the lines from those towers were going. I remember when we first got to see My in the PICU after surgery, the entire area was thumping with Mylin’s heartbeat. Hard! It freaked me out so bad! It stayed beating hard like that the majority of the time. This line is the quickest way for the body to receive medication. We found out that because it goes all the way down to the heart! (Ahhh so freaky!). Daniel watched Christie take it out. He said first he didn’t realize it was actually stitched in, so the stitches had to be removed. Then once they started to take it out, he couldn’t believe how it just kept coming and coming. That thing is so long! (I put a pic of it below for anyone curious. Anyone grossed out scroll past the next pic till you see the next paragraph.) The other thing about that line is that there were so many lines going in that it was is heavy! When all the lines were in, we would have to hold it up to have it not pull on their neck. Sometimes it had a little clip that clipped it up to a pillow or the bed, and there were several times I in a slight panic (trying to hide it) had to remind the nurses to unclip it while they were starting to have My sit up. Yuckooo. The dressing on it had to be changed frequently, because the area around it needed to be sealed by a bandage. It’s so heavy, that the bandage would get pulled down by the weight. When they changed it out the nurses would have to get in the full gown and mask, and we’d have to mask up and keep our distance. So glad that thing is gone!

I am sleeping here tonight, so hopefully Daniel can get one ok (hopefully even good night) of sleep before he takes it all over on his own while working full time remote. Yikes!

I fly out tomorrow evening and will land in SD at midnight (3 AM Columbus time that we’ve been living for almost a month). Then I have to be at work for a really long day starting at 8am. My in-laws are also flying in tomorrow. Since I’ll be working lots of 10-12 hour shifts and not have many moments to even blink, I’ll need help with the Twinnies. They come home and get right back to sports! It’s always non stop at our house (usually 7 days a week of extracurriculars not counting drs appointments or any of that) even before all of this.

So tonight if you could put it out there for Mylin’s full and speedy recovery to continue, if you could add us in for some good life toning rest… that would be amazing.

Also, this is the rainbow that showed up after yesterday’s thunderstorm and went all the way over the hospital. 🌈❤️