October 2: Day +92

Heaveno!

Well, an okay today for Bella... it was kind of a win... 2-1 in favor of Bella... (I have English Football on the brain... tomorrow Arsenal travels to Chelsea - big match up)

Points for:

We changed her dialysis circuit today, but will still end up even for the day on fluid in and fluid out. This is a definite victory as we are usually 200+ up on fluid on circuit change days. She also tolerated going back on Prisma extremely well today. Definitely in her top 5 circuit changes to date. We never know what to expect on circuit change days... some days she's tachycardic - her heart rate goes through the rough -... some days she's hypotensive - her blood pressure goes through the floor. Some days, she looks like she's withdrawing. Today, she opened her eyes for a couple of seconds a couple of minutes into the new circuit, and wiggled around for about 30 seconds, then was back to her recently snoozy self.

We weaned her ativan today and you would never have noticed. That's two good days in a row of sedation weaning, without any negative effects. We are rotating one item a day now, whereas last week we were weaning one item every 12 hours. This new pace is working better for her in terms of her being comfortable. In fact, I can see tomorrow going the same way, which is a good thing.

Points against:

We had to go up on vasopressin today to .0006 from .0005. Even after the increase, Bella's blood pressure has remained right at the minimum acceptable level, and hasn't allowed us to pull any fluid today. She was really lethargic all day again (like yesterday), and regardless of what we did, we couldn't get her pressure to have much head room, like in recent days past (passed?).

So, we came out on top for the day, but not without being scored on. As a goalie and defender, I like to keep a clean sheet (maintain a shutout), but I'll take the win over a draw or loss obviously any day of the week.

In other news, we took Ali to see Legends of The Guardians, the new animated owl action movie. Who knew you could make an action movie for owls? Ali sat through just about the entire movie - save one bathroom break (innocent enough) - and actually liked it! I thought it was going to be too scary for her, but she claims she liked it, so... Great! We then hit Macaroni Grill and a little shopping in the mall for fun. Still, it was hard to keep our minds off Bella. We know we need to unplug and recharge as a unit, but it still gnaws at me that no matter what I'm doing, my baby lies helpless in a hospital bed, for another day in a row. At least that feeling doesn't persist constantly. I know that she has a nurse in her room with her 24/7, so she is completely safe.

At times, I am able to be present and laugh at Ali or Angelique or the movie. Tonight, while waiting for our table, we played "hot potato" with the little buzzer they gave us, and we spontaneously adapted the game to say some noun before the words hot potato before handing to the next person, and it couldn't be the same thing as had been said. Ali was right there hanging with mommy and daddy for what seemed like forever! Man, that kid is S-M-A-R-T (very objective opinion, I know).

Cooling off a head booboo with... a bottle of smirnoff ice? Hey, cold is cold. What's in her mouth? Best guess wins...

Thanks for all the specific prayers, wishes, thoughts, and intentions today! It was so nice reading to Bella. I really enjoy that process. I get to feel like a daddy again, not just a caregiver. I love just resting my hand on her head or sticking my finger in her hand while I read your words to her. See, when I am working on Bella, often I have to turn my heart off to manage whatever the situation I am dealing with. For example, when we did the trach dressings and change, I am not yet accustomed to that giant LOUD hole in Bella's throat. It is rough for me to get used to. But when I'm doing those changes, I have to be very clinical, or my heart will break if I consider how far down the rabbit hole we are to be dealing with a trach in the first place. Similarly, when I am changing the dressings on her 4 lines (dialysis catheter, med line, arterial line, G/J tubes)... I need to not think about all the tubes going in and out of our daughter to keep her alive, I just need to look at the patch of skin or dressing, and not "see" our daughter. It's my defense mechanism to avoid being overwhelmed by it all.

However, when I am just reading to her, I'm not reading to her skin, or a wound. I am reading to the self inside that little patient. I am reading to her soul. It's still safe to do that; I know I can't accidentally hurt her by doing that, so I can leave my heart on, and I KNOW that she can tell the difference between the two experiences, because I KNOW that I can. SO, thanks for continuing to give me material to read to her about.

Open note to all our friends/family that did know us before the blog... just fill us in on what you guys are up to. You know what we're up to! We miss hearing from you, and it would be fun to fill Bella in on the seemingly mundane and ordinary. Frankly, it would be nice to read about the "normal" life since we are nowhere near that right now. (You didn't have to be friends or family to do this by the way. We really LOVE getting to know all of you a little bit more every day you share)

The wall continues to grow!

Thank you to all of you who have answered the call and let us in a little on your lives. I feel like we are getting to know you, and we feel closer to you every day. That means a lot to us. I bet you guys are starting to learn a little about each other as well. This IS a community. WE ARE a community. We may be here to follow and support Bella, but inevitably, we learn to support each other as well. I LOVE when I see someone comment on a comment and begin a thread of a conversation! We ARE connected. Through Bella. Think about it. SHE did this, and she hasn't even spoken a word yet. Just BEING strong, and just BEING as joyous as she was before transplant despite her disease, SHE inspired Angelique and I to step up in our own lives. If she could maintain that wondrous state, what did we have to complain about?

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

God night.

Fall is upon us...