September 10: Day +70

Heaveno!

Remember the phone call story?

Got another one! I swear.

It's 3:30 in the morning, and the room phone rings. I launch into the air and answer the phone as my heart rate explodes and adrenaline rockets into high gear.

The last instructions I left the night nurse were:

1) If she had to call, call the room phone

2) Don't call.

She followed the first part at least.

The reason for the call?

The Prisma circuit had a malfunction and shut itself down.

That was it.

Nothing for me to do about that. I told her she gave me a hard attack. She apologized; she thought I would want to know.

Today, we politely let the staff know that it is not necessary to call us if and when Prisma crashes.

Moving right along. It was actually a really good day for Bella in several ways:

1) Her new head gear stayed nicely and did not cause any collateral damage

2) Despite being off Prisma for nearly 6 hours, they were able to pull off all but 90 mL of fluid for the day!

3) This meant that Bella's not leaking out her vasculature, because her blood pressure held all day and night.

4) We did a pressure support trial again and Bella did great.

Now for the bad news:

Sam came in and had "the talk" with me today about extubation and the tracheotomy. Basically, it went something like this:

"Her tracheotomy is scheduled for Thursday unless fluid magically starts flying off her over the next 48 hours. There's no way she's ready to be extubated Monday. There is simply way too much fluid; it takes way too much pressure from the vent to adequately open her lungs. She's gonna poop out from 70 days of atrophy and we'll end up having to re-intubate her. We waited a week, but we need to wake her up, and we need to take that tube out of her throat. We don't know what her airway is going to look like when we take out the tube (respiratory therapy is pulling blood out of her airway currently). It may be way too scarred and we may need a trach anyway."

That was pretty tough to hear.

I know it's his job to give it straight, and as much as he wants to see an easier way, he doesn't see one. To him, a trach is not a big deal if it means Bella gets better. We understand the logic, but he's not the one who will have the problem of caring for a trach in a kid who is so fluid overloaded you can't even see her throat. Her skin is literally bursting and peeling off right now due to the fluid excess. There is no room for a plastic apparatus sticking out of her throat. I genuinely have no idea how they plan to secure it safely without causing damage to her neck, and how we're gonna clean and care for it while also rolling her onto her side to care for her ulcer every day. Ugh. Sorry if I sound like I'm whining or complaining, but it somehow feels like if Bella ends up with a trach, we somehow let her down. I don't know. Spend 68 days in an ICU and try to retain your sanity, clarity of thought, composure, and ability to be flexible. The overarching grief at this point has become constant and increasingly painful. When we are thinking and operating tactically moment by moment, day by day, I can still function. But when I remember my daughter Bella, the pain is crushing. To have gone into this looking so good on paper and so good clinically, and to be where we are at this point, so far off the road we envisioned, it's easy to feel completely lost.

Even though I believe that God has a plan and that this is all part of it, it doesn't stop me from feeling this pain.

Despite all that, I can still feel pain and be grateful. For what?

1) Bella is still alive, and frankly, I don't sense that her life is in danger if we continue to manage her kidney failure as we are, and support her blood pressure as we are.

2) We are able to be here as a family.

3) Angelique has a job that allows her to work from home.

4) We don't drive a car except on the weekends, which means a lot more quality time together.

5) Ang and I walk Ali home from school every day.

6) We have more offers for home cooked meals and BBQs than days in a weekend.

7) Not a week goes by without cards and gifts showering us.

8) We have absolute amazing tenants living in our condo back home.

9) Angelique's income and benefits allow me to devote all my time and energy into being Bella's primary caregiver.

10) My internship and work in several hospitals prior to coming here has prepared me to feel at home in the hospital and unintimidated by ANYONE in it.

11) We have 9 meals a week prepared for us by hundreds and hundreds of well-meaning, generous volunteers.

12) We get to live in a 900 sq ft furnished apartment 2 blocks from the hospital and 2 blocks from Ali's school for $750 a month, all of which is reimbursable through our insurance.

13) There are 5 kids with EB here on 5D and C right now.

14) 800+ people from 40+ countries are reading this gratitude list today.

15) You are one of those people.

In all our lives, there are constantly two lists: things that bring us down, and things that lift us up. The question is not which one is bigger. The question is which one are you paying more attention to?

God night.

Ali attacking me with a frozen bag o' broccoli...