August 18: Day +47

Mommy enjoying those peepers! Even if they're half open...

Hello, and thank you for coming. Let's get right into it. Overall, Bella is still having trouble with her blood pressure, and Renal and ICU are fighting over whether she is too wet or too dry inside now that her crib's scale has completely gone bezerk and we really don't know how much she weighs. Today's been a little rough for Angelique and me. Two reasons:

1) We are still picking ourselves up and dusting ourselves off from being blindsided by this LVOT obstruction business. At this stage of BMT, we thought we were done throwing any new organs into the mix. Having a developing heart issue was just not in the cards, and yet, what do we really know about what should or shouldn't be in the cards? It's BMT, after all.

2) The waiting. It's like when we were told we were looking at V.O.D. but couldn't give her the one treatment to stop it for over a week. I know that that saga ended in our favor, praise God, but hours feel like days around here and days feel like weeks when you are waiting. What are we waiting for? Tomorrow's cardiac MRI. We're also getting a Chest CT scan of her lungs while we're down in imaging to get the best possible picture of what is currently plaguing Bella. We won't have the results from the test till next week most likely, and everyone agrees that we can't move in any direction till we see that MRI. So we wait.

Here's the worst flippin' part of it all. We have to discuss what 'might be happening' somewhat to prepare ourselves, even though we won't know for sure for a while. These are the conversations that wear parents out. They are the hypothetical scenarios that keep all parents up at night for any reason. What if this? What if that? That stuff can drive you NUTS! The conversation that was had in rounds this morning by Dr. Steiner and Dr. Tolar was that kind of conversation. Dr. Tolar implored me not to jump to conclusions about this LVOT thing till we see the images, and it isn't so much that the options are scary (which they are), it's that we're talking about something this big at this stage of the game at all.

SuperDaddy!...

On a slightly different note, I have to make a comment about the myopia of western medicine before it escapes me. I've been trying to figure out just how to articulate this following point for a while and I think I've got it. Here goes...

On many occasions, a health care professional will ask, "Her skin looks GREAT!... what do YOU think of her skin?" to which I reply cooly, "Yep, her skin looks good. Now if we can just get her organs to work again, we'll be really stylin'." Then they look down feeling dejected or awkward.

It's not that I'm not excited about what's happening with Bella's skin. I am. It's just that Bella is more than her skin. I haven't heard the sound of my daughter's voice in 45 days, and for the week prior, what I heard was mainly wailing and crying. Her first word? While trying to pull away from mommy and daddy when we needed to suction her mouth, she cried, "NOOOOOOOOOO!!!!" Her second word? When we were done. She cried, "OWWWW...."

No joke.

Now, she lies hidden under machines, tubes, wires, and blankets, and when you so much as remove her blanket and expose her chest to air for a second, she starts to writhe and wiggle in anxiety.

I pray that this too shall pass, but Bella "the Whole" is still missing, regardless of what's happening to her skin. So, medical world, when I seem a little less than excited about the one part of her treatment that is going well, please take it in context; it is good news, but the bad news currently outweighs the good news.

What IS currently plaguing Bella? Two main things:

1) Her blood pressure. She cannot produce enough "umph" out of her left ventricle for her blood pressure to be at a safe level, so she is on medication to help "squeeze' her abdomen to artificially inflate that pressure. Problem is that the medicine reduces blood flow in the intestines, so the longer the problem with pressure persists, the greater the chance of necrosis (dying of tissue) from poor blood flow in the belly.

2) Her lungs. Bella can't seem to produce the right balance of gases in her blood stream without a lot of support from the ventilator.

Bella most likely did contract some sort of infection over this past weekend as well, but it seems at present that Ali's cells are behaving appropriately and fighting it off! That is good news, but what role the infection is playing is unknown because they don't fully understand what kind of infection she got. All we know is her counts shot up and down wildly over a couple of day period, signaling that they were mobilizing to hunt something down.

So, I feel beat up, and beat down, and just plain BEAT... but not beaten. There is some serious emotional fatigue going on. More so than physical fatigue. It's getting our emotional engines rallying up and firing against the weight of the current challenge... when we thought we were SO CLOSE to extubation one week ago today... it's like we just landed on the really big ladder in the game Chutes and Ladders... remember the old commercial? It went something like, "Oh Jimmy! You're going down, Down, DOWN!" LOL. Feels a little like that.

GoofyAli!...

Tomorrow is a(nother) big day. Please pray this trip to imaging doesn't hurt Bella any. Please pray that they get really conclusive images during both tests. Please pray Bella goes back on Prisma safely and uneventfully tomorrow when she returns. Please pray for strength for me. Please pray for focus for Angelique. We ask for all of these things humbly and with gratitude.

Good night.

Fabulous socks of the day...