My had a really good day. NO nausea, as in none. It’s literally been YEARS, no exaggeration, YEARS since My hasn’t had any nausea!! It feels crazy to even type it.
They did have some top of the incision pain, and back pain. The recliner flung their feet up on them so I think that started the abdominal pain. This morning when they went to get up the GJ tube sticker got stuck to their Fuggler (weird stuffed animal with real looking teeth) and pulled the tube pretty good. I think that’s probably another culprit.
My ate really well too. They had 1/3 of an açaí bowl for breakfast. Linner they ate almost an entire omelet, 2/3 of a baked potato, 2 pieces of bacon, a chocolate chip cookie, and a 16oz crystal lite peach tea! I wasn’t sure how they would feel after that big one! However, I think it was much more balanced than the one that really got them a few days ago and were starting to figure out things insulin wise. Then later in the evening, they asked if we could walk down to the 1st floor and get ice cream. They finished two scoops! We are a little high with blood sugar right now, but not crazy. We had calculated a slightly higher dose of insulin that the pump was suggesting and decided to go with the pump, so I think that’s why.
Blood sugars are still a back and forth game. We did several adjustments throughout the day for both bolus and basil insulin. Part of that because we were still chasing blood sugars all night last night. (I think Daniel said they didn’t go to bed until after 3am because of issues with that.). Another part of that is that they are switching Mylin’s formula in the feeding tube to be formula that our insurance would cover if we were to need to go home on feeds. The formula that our insurance covers is lower and carbohydrates which means we need less insulin.
I am currently on the DISC 48 hours. This means I am supposed to be watching Mylin‘s blood sugar all the time on my own and then if I need to do a blood sugar test, I have to call out for the nurse. Then I am right there with the nurse and get all the information. When we make any changes, I have to be a part of that. I’m basically being trained to be able to take over the reins after the next few days. I’ve been doing it all day. I changed out Mylin‘s pump site and gave them a new pump. I have been adjusting all of the blood sugars and checking in with the nurses and doctors. It’s nice that they do it this way though because the nurses and/or doctors are here to tell me if I need to adjust anything or if I got a step wrong. This way, I’m not just flung into it as soon as we leave.
There is also talk that I will be starting G.I. 24 hours tomorrow or the next day. What this means is that I will also be in charge of feeds and making sure the tube area is looking good. Mylin also currently has a patch over the drain, so just checking and seeing how that looks.
The craziest part, is that even with how insane things still feel, there are talks about us being discharged by end of this week. My mind is blown. This is literal weeks and weeks earlier than I thought we would be discharged. We aren’t just sent home after we are discharged. We will be sent over to the Ronald McDonald house for several weeks possibly even over a month just depending. Once at the Ronald McDonald house, we will have daily appointments that we will walk back-and-forth between the Ronald McDonald house and Nationwide Children’s Hospital for.
Daniel left today for some important work meetings and won’t be back till Thursday night. I told him of course I might be bringing Mylin back by myself. Life is just crazy like that. We’ll see how that goes.
It’s really encouraging to not only see Mylin have such a good day, but to know that they think Mylin is doing well enough to be discharged soon. Even as intimidating as that all seems.
I have a slew of CVS prescriptions I need to walk across the street and get. Because of course our insurance will not cover prescriptions from the hospital pharmacy. The team sent over all the medication’s and equipment. We will need to be able to continue the level of care. Mylin is getting at the hospital at home. Our goal for the next 24 hours is to wean Mylin off of the intense pain medication‘s and just get down to nerve medication and over-the-counter pain medication. It just blows my mind that it was just two weeks ago tomorrow that we were on the second floor waiting for Mylin in surgery that took 16 hours! What a flip’n whirlwind, rollercoaster, lifetime in two weeks… just SO MUCH!!!