Since the epidural came out My has been down right miserable, in their highest level of pain and extremely nauseous. They have lived with that barf bag at their face for the last 24 hours.
One of the parents from my support group let me know this floor takes a lot more advocating and I am seeing that already. I asked the nurse if we should let pain team know that the pain has been at a 9 all night. She said I could let them know at rounds. I asked what time is rounds? She said all times of day they never know. So I asked do we have a way to contact pain team now, and told her pain team has wanted to know this before it’s been this bad for so long. She said she just gave My pain meds and so let’s wait an hour. My is like I am miserable (My can barely talk through the pain). My is also spitting up more as the morning progresses. I did end up going out and getting the nurse and asking her to contact pain team now please. Pain team ok’d a bolus dose of IV pain meds, so hopefully that helps.
My’s blood sugars began rising through the night and have been over 200. Even with an insulin pump site change, they only got it down to 185. I am going to ask if they have contacted endocrinology, because with the TPIAT they run a tight ship and have a goal of 120 or lower (this is to ensure that the transplanted islet cells are not damaged). Upstairs they were calling endocrinology when the sugars were 140. I’m sure this isn’t helping nausea either. Next sugar check is in 5 minutes so we’ll see how that goes… 188 rising again. Diabetes team wants to adjust insulin again
My is taking several meds orally, and I can’t help but to wonder if the feeds bypassing the stomach in combination with the pill going in the stomach are also making that worse.
On top of that they’ve been giving MiraLAX and it’s causing a mess if you catch my drift. The night nurse in the ICU had asked them to take MiraLax out of the mix for now due to some uncomfortable incidents for My. They didn’t and poor My had to have me leave the room and head to the waiting room 3 times in the middle of the night to change and everything and clean up. I asked the nurse to put it in documentation that both the nurse the night before and My wanted MiraLAX taken off or pretty drastically reduced.
Needless to say this kid is pretty dang miserable right now. They’ve also had hourly finger pricks for blood sugar, drain empties, bed turns, pump site change, g-tube inspections… so we’ve also both been up the majority of the night.