My had a rough night last night. Blood sugars started rising just after My went to sleep. They were getting pretty high for where the hospital currently wants to keep them to ensure those transplanted islets stay healthy. My had just had a small bolus of insulin (so we were still in the 3 hour window of not being able to do another), and the ramped up basals for night feeds were just an hour out. I confirmed the rising blood sugars with the nurse, and I kept an eye on them. When the night feeds came on board, that exacerbated the situation even with the larger basal rates. Mylins blood sugars were rising a point a minute for awhile, and even made it and hovered into the 220’s. We did get the ok for another small bolus. After a bit the sugars came down. At one point they were down 25 points. That took some time, and I thought finally we are down trending. Then they slowly started rising, and at one point in just 5 minutes the blood sugars came up 13 pints landing us back in the 200s. I can’t lie, I was feeling stressed. They eventually did come down. There were some more basal rate changes, and eventually another tiny bolus was given. We were literally up all night. Between the every 3 hour finger pricks (that I have an alarm set for) something was constantly coming up. Mylin and I were both exhausted this morning. My voice is shot.

We eventually did get My’s sugars steady, and My was able to get some rest and sleep in.

My is still having some pain around the tummy tube. We think it’s likely from when it got stuck when they were sitting up yesterday. It’s a little red, and has some discharge, but I guess it all looks healthy. They complained about nausea a little more today, but also have gas in their stomach. The surgery caused delayed gastric emptying, so this can be expected.

Besides that, My is doing really well. It’s wild how much more energy they already have while healing, than what they did with that dying pancreas. I haven’t chatted My or seen them awake for so much in so long (and that’s wish them still taking hours long naps).

It sounds like we have a discharge date! Monday! It would have been Friday, but they want to give Daniel a chance to do the 24 hour diabetes care and get the hands on education like I have had. Especially since I am only a few days away from heading back to San Diego with the twins for 10 days (😕 I can’t even think about leaving yet). I am guessing I will start my 24 hours GI Care with My tomorrow, unless they hold off till Friday and have Daniel do both simultaneously. It’s so wild to think that we were told we’d likely be hospitalized for over a month and more than likely two, because My was such a severe case. Yet, here we are 2 weeks and 1 day after surgery and we are talking discharging. We’re hoping to get My off these feeds before we go, which not only make things easier in general, but also help with the night time highs. Meds being weened or switched over to oral has all been going really well, so that’s all set up for discharge.

Now, discharge doesn’t mean we’re outta here outta here. That just means we’ll move Mylin into the Ronald McDonald House, and we will do most of the care, while attending daily appointments at Nationwide Children’s Hospital.

I am seriously hoping we find a good rhythm with the insulin before that time comes. Day time is overall fine, and we seem to be able manage blood sugars well. Mylin’s body seems to ramp up blood sugars on its own when My falls asleep, which then puts us in a situation when feeds start and raise the blood sugar too. On top of that, My seems to be a slow insulin responded, so once it’s up it takes quite awhile to come down. Due to this there has been a few times they have dropped real low later in the night. It’s a very delicate dance with night blood sugars and insulin.

We continue to be encouraged by how many people across various departments of the hospital have commented on how well My is doing so quickly. During one interview today I had mentioned getting older kids Mylin’s age involved in care pre-discharge would likely be helpful. The woman on the other line said while she could see how that would be great, every other kid has been sleeping or really out of it and her team came back and commented that Mylin was the most aware, asking questions patient they had seen so early on when they visited a week or so ago. I think for My they really were at a point that every day was so bad before, that they felt the changes pretty quickly. I can’t wait to see what they do fully healed!

Here’s hoping for some rest tonight (I say as no joke, the night scaries blood sugars are already starting to rise).

On a bonus good note, Mr. Pickles (the bald nurse, Jon, as he wrote on the room board our first night out of the PICU) stopped by and brought My another gift. This time he brought a pancreas stuffie! My loves it! He is just so awesome!