September 9: Day +69

Check out the new headgear... and eyebrows!

Whew. Long day.

Started at 2:30 when the phone rang. I was in the middle of entertaining Paris Hilton in my parent's garage when it rang. Not cool. Now, I don't particularly like Paris Hilton, but in the dream I was a teenager, so I figure what teenager isn't stoked if he finds himself with Paris Hilton? I probably should just stop talking about my dreams with you all.

Anyway, you remember me taking you through the terror of the middle-of-the-night calls. The worst is when they say, "We need you to come... as soon as possible..." It's the phrase I dread the most, and I got it last night. Turns out Bella's breathing tube... well, Bella spat out her tube a good couple of centimeters during her late night partying (thanks to Sam yanking her off her sedation meds yesterday... finally caught up with her last night) and they didn't want to set it back in without me. Plus, her headgear was no longer holding in place, so we needed to adjust it to a new spot and anchor it there.

By 3:30, I was back home, and by 4:30 I was back asleep. By 8:00, I was back in her room again. No big deal; if she hadn't been sedated and intubated through most of this transplant process, there would have been MANY nights of a lot less sleep than last night. It's just those darn phone calls.

It was a better day. We took it slow. We let Bella sleep for as much of the day as we could get away with. By 3pm, we had a bunch of things we needed to do with her, so nap time was over. Respiratory therapy spent the entire day ordering new headgear, adapting exiting headgear, brainstorming and trying their best to find a better solution for Bella's tube. I give a lot of credit to Becca and Judy for really spending most of their energy today on Bella. Judy is even going home to SEW Bella a new cap without seams that we can use to anchor the tube securely. She ROCKS. They both do. Here are pictures of some of the models we tried... first on me. Why? Because my head is only 6 cm bigger than Bella's. No joke. Her head is 50 cm! Mine is 56 by comparison! Her head is that big to begin with, plus it is FULL of fluid.

My Lance Armstrong impersonation...

My pilgrim woman impersonation... hot, I know...

We ran the dialysis at even for intake/outtake, and actually achieved it all day and night! Bella's blood pressure was strong throughout the afternoon and evening, and her vascular fluid volume was good despite running at even. This is an improvement from when we were just having to run the circuit at +10 mL an hour due to her capillary leak issue.

We talked more about extubation versus tracheostomy today. Right now, neither are a good option. So, our hope is that Bella's vascular fluid volume holds steady so that we can continue to run her even like today. She burns off between 250-300 mL a day on her own, so at that rate, if we could run her like this for a week, and we planned for a Friday extubation, we could theoretically get 1.5-2 kilos of fluid off her. That would greatly improve her chances. Right now, there is simply too much fluid on her chest. It takes the vent almost double the amount of pressure to fully ventilate her lungs as it should.

The good news is that if we (mommy and daddy) feel that she is making headway, we have the final say on when we have surgery, because nobody moves a muscle till we sign the consent for surgery form... so that relieves us a little.

We skipped a pressure support trial today to give her a chance to rest after yesterday and last night's madness. She needed the rest. No problem; everyone was on board with that. We'll start them up again tomorrow. We'll probably do one in the morning and one in the evening, then do three on Saturday, maybe. Maybe we'll give her a day off in between; it all depends on the vasculature not leaking anymore... please pray/intend for this. No body in the hospital who would actually be involved with the surgery or care afterward wants this trach. It would be a no brainer in any other kid, but we all know Bella isn't any other kid!

Okay, it was a long late night; I had to do a full bandage change this evening as well as Bella is leaking, blistering, and shearing all over right now. The fluid is literally popping and oozing out of her through every window it can. Not fun right now on the skin front.

Still, it was a good day; Bella has better headgear, her wounds are properly tended to, all her line dressings are fresh, and she's net -20 as of 10 pm! Life is good. Stay tuned...

God night.

Fabulous socks of the day!