She woke at 0740.
I stood in during morning rounds and requested that they remember to wash their hands before they come into the room, as the night before there had been a nurse come in during all the excitement who clearly should not have reported to work that day who coughed into her hands outside the door only to come straight in and start touching things. I also reminded them to take care how they move Evie, given her OI, as there have been a few instances now where she's been handled in such a way that I was half-surprised she didn't break a femur.
We had another echo-cardiogram, the results of which I haven't heard, but admittedly, I did pass out and sleep for a few hours this afternoon. My understanding is that her heart looks great, and appears to have suffered no ill effects from last night's excitement.
I had been unsuccessful in acquiring any denture wax as Evie's aunt had suggested, and the orthodontic appliance in her mouth was causing her enough grief that one of the dentists were called in to remove it. They were confident it would be quick and easy to remove. Long story short, it didn't go well, but it got her agitated again. She rolled over and slept for a bit, only for us to discover that she had been bleeding all over herself and her bedding. The splint on the PICC line put in last Sunday was soaked with blood, which was very traumatizing, because it was the best access we had to provide her with medicine and fluids. Upon further inspection, it wasn't the PICC, but her left thumb IV which we'd used the night before--it had come out while she was fitfully sleeping on her side, and she'd bled onto the other arm's splint. We were all relieved she hadn't lost the PICC, but it forced the issue that we had to put in another IV of some type. I campaigned for the cause of planning ahead to make certain we wouldn't be in a situation again where we couldn't provide medicine/fluid/whatever because there weren't enough available lines and to make sure my little pin cushion wouldn't have to endure this again, as she has managed to break multiple lesser IV lines during this hospital stay.
After much discussion, it was agreed that we'd attempt to put a PICC line in her other arm. Typically, they sedate you to put in a PICC line, but Evie hasn't been stable enough to have sedation be an available option. Armed with an ultrasound wand and a sharpie, two independent technicians marked the best opportunities for success as they knew they probably only had one chance.
Just as they were getting ready to perform the PICC insertion procedure, the dentist showed up again with one of her superiors who was supposed to be "the guy", so we delayed the PICC insertion so that he could work his magic. Several botched attempts later as Evie reached her unhappy place, they left with the device solidly where her orthodontist had put it. It was poor timing, as Evie now needed to pluck up the courage to hold still for a PICC line insertion, without being sedated. I tried to help her calm down, but had to leave as I wasn't allowed to be there for the procedure which lasted around 45 minutes. I didn't know how long it would take, and as I wandered back into PICU to ask a nurse, Evie began to shriek like a banshee. Heart-wrenching.
Gratefully they were successful. Heather arrived shortly after that and Evie was thrilled to see her. Gratefully, the constant flow of doctors from every discipline under the sun began to slow in the afternoon, and Evie's sleep deprivation took over and she rested -- so I did too. The rest of the day was rather uneventful. Heather had brought the dental wax with her and tried it while I slept. It didn't work--what she needs smoothed are two long wires, which don't have much to grab onto like braces... I may try it again though if Evie keeps struggling with it.
At this point, we're back to the dance between glucose and insulin. Her pancreas is producing insulin, but given the higher amounts of glucose and other sugars which are part of her IV cocktails, it is difficult to dial in how much additional insulin she needs. Her numbers all looked great this evening, and she has been able to get off the vast majority of the drugs which she had to start late last night to keep her with us. She absolutely loved the time she was able to spend with her mom. Health-wise, her body is significantly improved from 24 hours ago.
Our current goal is to leave ICU (and not come back!) To do that we need to:
- Get off continuous dialysis (which requires:)
- Stable functioning heart
- Eliminate the need for IV administered insulin
- No more Milrinone -- CHECK! We turned it off tonight :-) ... and we should be turning off the epinephrine as well.
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