This morning at 3am I thought I would lose my mind. Hope finally fell asleep after a dose of sedatives, but just 1.5 hours later was woken up by one of her pumps beeping. At 6:00 am I asked the doctor to come and see me. The resident that arrived had no useful ideas, other than stopping her feeds - something we are trying very hard not to do. I began crying in my overly exhausted and emotional state and shared my frustration with how things work. He agreed to give her a second sedative to give her at least a little bit of sleep. By 7:00 Hope and I fell asleep and were able to sleep until 11:00 with only a few interruptions.
The charge nurse informed me that Hope was under the "teaching" teams care. I immediately requested to have her taken off the teaching team and put with the experts. I'm all for residents learning, but I just want to go home and I've been pretty patient with them so far. I want experience now.
The doctors had been patiently waiting for me to wake up, and started flooding in when I finally crawled out of bed. The cardiologist confirmed that Hope will be presented on Tuesday afternoon at the cardiology conference and will likely be sent back to Edmonton as soon as they can schedule her for a heart cath. Shawn and I both feel this is best for Hope. I'm dreading that long wait while she's having the procedure without Shawn there. I've gotten stronger though, I'm sure I'll survive.
Today the GI team spoke to me about Hope potentially having a problem absorbing protein. An issue that is sometimes seen in kids after the third surgery but almost never after the second. Hope likes to be the ONE baby that defies the odds and they've decided to look into this further. Later in the day they discovered that her potassium was dangerously low and they ran potassium into her PICC line for many hours. Her blood work is now back to normal.
Hope has been having crazy amounts of diarrhea for days and is now off feeds and on pedialite to keep her hydrated. She is also back on isolation as they are wondering if she has an infection in her tummy of some kind. I know what you're thinking, "seriously? How can this child have so many issues?" We feel the same way.
We're clearly in for another long haul before we get close to discharge. We are settling back into the idea of a long hospital stay and are working to keep our spirits up. I'm continuing to work at finding volunteers to sit with Hope through the dinner hour and even over night. We've found that if we can have dinner together as a family, we feel more connected and less stressed out. It's also a blessing to be there for Sadie and to put her to bed as often as I can. Someone else staying at the hospital through the night allows me to have a few minutes with Sadie in the mornings and gives me the rest I desperately need. I can't imagine only sleeping like I did last night and trying to function each day. We are so thankful to all the crazy people that have already given up a night of sleep to sit with Hope. You are a great blessing to our family and we are sincerely thankful for you.