Mylin had a much better night last night. Being off of feeds made for much more controlled blood sugar. We did one quick basal rate change to account for some natural highs and lows that Mylin’s body tends to have. After that, it was smooth sailing till about 4am. Then it was a combo of interesting blood sugar and a wonky CGM. My slept through most of it, but of course I was up. At one point the CGM was reading a full 50 points higher than Mylin’s actual blood sugar, but because we were still hospitalized we couldn’t find that out until we called out for a sugar check. We were off of all of our “cares” which meant I didn’t have to get up for any meds or feeds, or changes with the exception of unlocking My’s phone for them to make the insulin change.

Unfortunately, My woke up extremely nauseous sick. They spent the day before we left sleeping or hovering over a barf bag. Daniel did “burp” the g-tube and was able to relieve some internal gas build up. We couldn’t get My to eat anything. They tried a Boost weight gain shake and couldn’t make it through half of it. This is nerve wracking for the feeds situation. If the feeds come back, so does manual mode on the pump. We really don’t want that.

Doctors came through for rounds and to congratulate My on doing so well. I told them it was so cute. Last night My said to me, “Mama, can you tell I have been working really hard on my recovery?” They all thought that was adorable. My was asleep for most of that though. They gave us info on meds, discharge, upcoming appointments, and reiterated that if anything comes up at all don’t do the whole “should we shouldn’t we” call. They said absolutely call or come in, that’s what they want! They are still here to work with us each step of the way.

I ran back to the Ronald McDonald House and washed and dried all the bedding and towels. I re-disinfected the entire room including door handles, light switches, table tops, remotes, and sinks. Then I sprayed the hell out of the room with Lysol. I am not risking My catching whatever Eisley has. We kept Eis away from the hospital, and tried our best to keep everything separate. They had a doctor come in this morning and ask about what I was doing to change the room over for Mylin’s arrival. She had nothing to add to what I had done.

I gave cards with hand written notes to all of our main team. Christie cried. She really is an Earth angel, this girl. She is such a comfort to have there. Like having a friend who knows this surgery like the back of her hand, and whose absolute goal in life is to give these kids a better one. By the way, she has been at the hospital every single day that we have been there! Every one since June 30th!!! So wild.

Twinnies and I are on the plane now, awaiting our first flight of the day. All in all we have about 12 hours of travel between the airport, flights, layovers and home. 😮‍💨✈️ Eis is feeling better for the most part, and has been able to eat. However, that girls lips are so purple, and I was like what the heck!? She said, “Is it not freezing in the airport?” No girl it’s not. Well all be more than thankful to sleep in our own beds tonight.

My was originally supposed to be discharged before 3pm. However, due to how sick they are, it’s being delayed. No official word on if that means another night or not.