September 5: Day +65

Happy Sunday!

Bella is stable. They are running Prisma to give back 10 mL of fluid every hour now. The thinking is that they usually run it to take off the same amount as they put in (net zero), but by the evening, Bella's vascular volume begins to wain so they end up giving her fluid boluses to make up for it. So instead of giving her 110 mL every night when her blood pressure crashes, they'll give her 240 mL over the course of the day and see if her pressure will hold. They figure she burns off/evaporates about 300 mL of body fluid every day (called 'insensible loses'), so IN THEORY, they won't be putting on any excess fluid per day.

We had a physical therapy consultation today which went GREAT. The PT gave me all sorts of exercises to try with Bella to work on passive range of motion. I had been trying not to think about the impact 2 months on her back is causing, but I had lunch with a fellow BMT mom who is a PT, and after that, it kept bugging me. Well, it was bugging Angelique, too, and she kept on me to get a consult, which I finally did. Thanks, honey! We also put a splint on her right arm to help it from contracting permanently. I am happy with the way it looks, and the PT was really helpful in guiding me through where she thought the best places of support would be, and I set the splint. It will be on for 2 hours, off for 2 hours, on for 2 hours, etc. from 8 am to 8 pm daily. This will help keep everything stretched out, and hopefully won't cause any blistering in the process. Be sure we'll be monitoring that closely.

We also finished the treatment-dose steroids today, and I'm sad to say they didn't have as big an impact as I hoped they would. To be fair, they definitely allowed the docs to go way down on her vasopressors, but in the end, she still is on both a bit of norepinephrine and a steadily increasing amount of phenylephrine. Rats.

Thursday looms.

Gosh, I really don't want Bella to get a tracheotomy.

Nobody wants the trach, but everyone accepts that at this stage of the game, it will allow us to wake Bella up, and hopefully being on less sedation will be the secret to the hypotension. The breathing tube at this point is causing problems every day in Bella's wind pipe and mouth, so it will be good to get it out regardless. Plus, there is no way at this rate that Bella's blood pressure instability is going to let the docs pull off the 3 kilos of fluid required to safely extubate her. Ugh.

On top of this, Bella got two more wounds and 2 big blisters on her thighs overnight when the nurse caring for her had to deal with a blowout. Latex gloves. DRY latex gloves. It says over and over in her care plan to use aquaphor on gloves when doing diaper care. Nursing has to wear gloves to deal with body fluid, but man, gloves are an EB kids biggest enemy in their room. Throw 3 kilos of extra fluid onto the girl, and the wounds come so much easier. Every time I see another dime-sized area of skin sheared clean off, my shoulders sag, and my blood boils. It happens when I'm not there, and it messes with me...

That little voice on one shoulder says, "See, they can't be trusted when you're not there. Those wounds are numbers 13 and 14 given to her by staff."

The voice on the other shoulder says, "You can't control everything; you just gotta let it go."

Frankly, voice number one makes a very compelling argument. Again, I know that I can't be there every second to watch every single move every staff member makes. It's awful. I remember when Bella was in the NICU, they injured her several times while we weren't there to protect her. When she got sick in October, and when she was hospitalized for her G-tube insertion, we made a pact that we would ALWAYS have someone (Angelique or myself) in the room with Bella at all times. This was exhausting, but effective. We were in each hospital for 5 days, and they felt much longer than that. Number of injuries? Zero. There is simply no way to logistically stay in Bella's ICU room 24/7. There is no room, and I need sleep. Every night. I wish I could be heroic and run on no sleep. My body doesn't allow it. It gets sick within 4-5 days. Each time I try to be heroic, my body reminds me I'm just a mere mortal, and shuts me down whether I want to be or not.

So, I go out and have fun with Angelique and Ali, and get a good night's sleep each night. Result? I haven't gotten sick yet, but Bella has gotten injured more than a dozen times.

Try and have that not mess with you.

In other news...

We hit the Renaissance Festival today! It was an absolute BEAUTIFUL day here today. Perfect temperature, partly sunny, just right. It was GIGANTIC. It exceeded my expectations. Ali got to meet two fairies, a princess that gave her a gold coin that she promptly threw into the enchanted forest pond for good luck, ride a llama by herself, a horse with daddy, and an elephant and camel with mommy AND daddy! A.m.a.z.i.n.g. One of Bella's followers on the blog from California owns one of the merchant shops at the fair, and let us pick out a gift on them! The manager there couldn't have been nicer. He went into the back and found a hand-carved leather-bound journal that has the most beautiful fairy hewn into it. Ali is a coloring FANATIC. She has to color every day or her head will explode. So, this book will allow her to funnel all her creative passion and energy for months and years to come. Thanks to Mark and Marcie!

Also, one of our dear friends from church, Sara, has organized a TEAM BELLA for the CHOC WALK coming up in October. CHOC (Children's Hospital Orange County) is our home hospital, and the one Bella spent her first 12 days on earth in. If you live in Southern California, would you please walk for Bella? Remember how I challenged you to do something in your community? Well, here it is. CLICK HERE to get involved.

Happy Labor Day tomorrow! Enjoy the show...