September 6: Day +66

Check out those bushy eyebrows comin' in!

Hello! Hope you all had a wonderful Labor Day!

Well, like I said yesterday, nothing like threatening Bella with an impending tracheotomy. She had another good day with the ventilator. She's done so well, that they've weaned her all the way down to a rate that they often extubate kids at. The vent is set to give her 15 breaths a minute, and she is breathing between 25-30 times a minute, so that means she is taking a breath on her own in between almost every breath the vent gives her. The breaths she is taking are good, full breaths. Right now, the team is thinking they'll let her take every other breath for a day or two to slowly strengthen her lungs. She is battling two enemies: atrophy and edema. She hasn't used these muscles on her own in over two months, and sitting on top of them is 9 pounds of excess fluid. So, we need to take it S-L-O-W this time.

Is there a baby in there?

I pleaded with Sam, the attending ICU doc who I am rapidly becoming buddies with, to grant us a "stay of execution" from Thursday's trach surgery. he agreed that if Bella continues to rally, we can hold off on the trach, but the minute she stalls or regresses, we gotta do it. Fair enough. I shared with him my concern about keeping it clean and the skin breakdown it will cause due to all the excess fluid in her neck and chest, and he agreed they are valid points. So, Bella is not a good candidate for a trach between having EB, a BMT and FO (fluid overload), AND she is not a good candidate for extubation due to the FO.

Once again, caught between a rock and a hard place.

Some other good news is that we discontinued versed today! By tomorrow, we will be off it completely and on ativan to help with the withdrawals. So, we are definitely making progress. Also, we ran Bella's Prisma circuit to give her back an extra 10 mL of fluid every hour today and she didn't need any extra fluid tonight! YAY!

So, pretty pretty PRETTY please LAY ON THE PRAYERS THICK that Bella continues to do well breathing, and that her capillary leak goes away, and finally, that her kidneys begin to work again. Also, we want to wish our primary nurse Lori a fun-filled and relaxing vacation! We will miss you dearly, but you have more than deserved it!

Bella's buddies, and a card Ali made all by herself...

Thank you again for praying for Bella, and for our family. May God bless each of you as well.

Ali rocking the kung fu in her new wellies...

Ali pretending to be a baby in daddy's arms in Bella's room...