September 30: Day +90

Daddy reading your letters from his phone (Droid X)...

Heaveno!

It was mostly a quiet day for Bella.

In rounds, Dr. Somani wanted to set an aggressive goal of taking off 200 mL of fluid by midnight. This was a reversal from him wanting to take it super slow, and Sam encouraging all to go super slow. He wanted to see if the avastin really did the trick. We were running her -5 an hour (the Prisma dialysis machine was set to pull out of Bella's blood 5 mLs per hour more than we infuse in through IV meds and nutrition) since midnight, but he wanted to ramp it up since her blood pressure was still 100s over 70s.

By noon, we were off vasopressin altogether!

However, by 3pm, it was just like old times. Take off too much too soon, and by the afternoon/evening, kerplunk.... Bella's blood pressure tanked again. First, it was just when she was sleeping hard, but then later in the afternoon, mean pressures were in the 40s even while we were changing her trach.

By 8 pm, we needed to turn the vasopressin back on and we ran her even on the circuit for the rest of the day. By the end of the day, we will still be -100 at least, and on the same pressers as overnight. The question will be if Bella's BP will rebound back up, or did we do something to mess it up (again). I suspect we might even need to run her +10 per hour over night to give her back a little volume and go up a little more on the vasopressin to give her some head room.

The reality is that Bella's vasculature recruits fluid back into it from her tissues at HER rate, not ours, and we need to find the sweet spot... her rate, and stay there. I completely understand testing her to see what she was capable of. How will we know unless we try?

I kind of felt like a heal as I was reading all your congratulatory letters to Bella, because by the time I read them to her this afternoon, her blood pressure had dropped in HALF, and I was hoping to inspire her to rebound. She is really beat from her withdrawals; she slept all day, and barely moved. I made sure today they didn't withhold her sedation even though she was sleepy. We get into this vicious circle with sedation. She is too sleepy, so we hold scheduled meds, then she gets way too agitated, so we hit her with PRNs (meds-on-demand), and by the time they work, its hours later and she's SNOWED by the stacked drugs and exhausted from the shakes, then it starts alllll over again. This just happened again yesterday. Too many PRNs after going back on the circuit and BAM, knocked out today.

However, having said all of the above, we are still WAAAAY down off pressers, steroids, and might drop under 15 kilos tomorrow morning for the fist time in 10 days. Now, we need to just run her even and let her insensible losses (the amount of fluid she naturally burns off) do the fluid loss.

We are not out of the woods, but at least there is a lot more sun shining through the branches!

:)

Bella's Guestbook, where staff have been writing the most beautiful notes to Bella about what they have learned since meeting her...

While I'm sad that Bella's blood pressure tanked yet again, I am more hopeful than before that she is improving, and most importantly, we have the full support of the docs to fight for her again. Dr. Doom is ON BOARD with Bella, and we are ON BOARD with Dr. Doom! Turns out he works with my good friend Logan, who had a lot of really nice things to say about him. I wrote him last night to apologize for writing him off on day one, and for making him the antagonist of the story. Hey, every good story needs an antagonist, and I thanked him, because he mobilized YOUR support like never before, and so without him, things may not have turned around, and we certainly wouldn't have had the avastin on board.

Mina and I in action cleaning and changing Bella's trach...

We got Bella's custom extendo-trach today and put it in with the help of our stellar ENT resident, Mina Le. She rotates to Hennepin County Hospital tomorrow, and we are going to MISS HER! The new trach definitely lets Bella actually move her head! When we sat her up to change her ulcer bandage, her head was bobbly compared to yesterday when it was locked in place by the bigger trach and velcro holder.

Look, even more cheeks to kiss! Behold, the extendo-trach is low profile till it squeezes out from between Bella's many chins...

The first two butterflies arrived in the mail today from Colorado! The walls are filling up. Thank you, and KEEP 'EM COMING!

One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.

Stuffy Gloom, M.D. hangin' with Bella. That's the name Ali gave him...

Here is Stuffy doing I don't know what with Ali's newest bear from Child Family Life that has a custom trach fitted onto him! He will hang out with the dog that has a central line placed in him. What a motley crue...

Ali and mommy were treated to a bald eagle, a hawk, an owl, and a falcon at RMH after dinner!