(Daniel)

Today felt surreal. In a good way, but surreal. We got to bed late last night but Mylin immediately fell into a deep sleep. 6 hours of uninterrupted sleep felt great compared to getting up every hour or 2 in the hospital. My alarm went off at 6am for Mylin’s first round of meds. I couldn’t go back to sleep so I got up and got some work one. Mylin woke up later feeling good. We went down on got breakfast. This felt monumental because it was our first time counting carbs outside of the hospital and without nutrition info for the provided meal. We looked up an average for the different ingredients used, added things up, and then used the low end of the estimate. Thankfully we were pretty close. Mylin’s blood sugar got up to about 150 2 hours after eating and dropped back down. After breakfast Mylin went back to sleep for a while and I spent some more time working. As it got close to lunch I woke Mylin up and they took their first shower since surgery! It already felt like a transformation seeing how they were doing to start our first day out of the hospital, but the shower took it to a next level. Their hair looked clean and happy. They were in regular clothes! Crazy what a difference that makes. At lunch time we had round 2 of carb counting by estimate. Things went pretty smoothly again this go around. I know it won’t always be “easy” like that but I’m thankful for a soft landing to get us started. After lunch I got back to work and Mylin spent the time working on art.

Our first post-op appointment with endocrinology was later in the afternoon . It was there I learned that Mylin is the first TPIAT patient they’ve ever had who could switch to auto mode on the insulin pump prior to hospital discharge! Roughly 90% of TPIAT patients have their spleen removed and require the medication hydroxyurea. Hydroxyurea causes accuracy issues with continuous glucose monitors from Dexcom and is a major reason most patients can’t use auto mode at first. The second, is that you can’t use auto mode while tube feeds are happening. The pump algorithm’s don’t play well with the unnatural pattern of carb intake happening sustained rate over multiple hours. Mylin was doing well enough with keeping down food that tube feeds were shut off a few days ago. Automode was a game changer for us, leading to more peaceful nights and steady blood sugar in the hospital. Well, the endocrinology team was also very happy we got on automate so early. They said Mylin’s blood sugar has looked great and been much more stable than TPIAT patients usually are.

It was also good to get Mylin a little bit more physically active. Just walking back and forth to the kitchen area in Ronald McDonald was more then they would do in the hospital. We also got more walking in from the garage to the endocrinology office. Mylin is notice some improvement from slowly increasing movement too. They commented how they can finally straighten their arms out. Their arms were very stiff and sore due to the position they were in while in the hospital for the 3 weeks.

Dinner was a more stressful carb counting scenario. The meal had lots of small portions such as scoop of corn salad with beans, homemade tortilla strips, a small piece of corned bread, a baked potato, broccoli, and green beans. The baked potato was the easy part! We did our best to estimate and chose caution to avoid overdosing on insulin. I’m really tempted to be a weirdo that travels with measuring cups and a food scale to make things easier.

Mylin was begging to see super girl. They were feeling good, and movies are a relaxed setting, so I was happy to oblige. Mylin also really wanted a movie snack. I let them have some, but I had to really drive home to take it slow. I let them have a small portion of popcorn and half of an icee. I won’t lie, the icee made me so nervous. It’s pure sugar. AMC had nutrition info on their website and I used that calculate the carbs and then took a couple grams off to be conservative. This time it bit me and Mylin’s blood sugar went high. At the end of the movie they were sitting at 220. Not ideal. If it’s still high in 30 minutes it will have been 3 hours and I can do a correction bolus. Overall we had a really good day. Mylin didn’t have pain or nausea today. They were energetic and chatted me up all day. I feel emotional just thinking back on the day. I had to fight back some tears while the diisc team was describing how transformed Mylin appears to them. Mylin has been so sick, so often the past couple years. Today was one of the best days I remember with them in a very long time. They still have a long way to go with recovery, but man I can help but feel all things at how much better they already are.