September 20A: Day +80

Heaveno!

And the days just go on and on...

It is Day +80 today. That no longer has any meaning. It used to mean that we'd be hunkered down in the Ronald McDonald House, going to clinic once a week, and staying out of sight watching endless re-runs of Mickey Mouse Clubhouse until Day +100 when we'd head back to California.

When you forecast how things are going to go in transplant, there are milestones, or average milestones, that most kids reach that you figure you will too if you are on track and things are going well. You figure you'll be out of the hospital by day 50 or so and hanging out at RMH and the clinic, expecting the occasional fever to land you a night or two back on 5D. Such is the way with many of the other kids here right now. I see their moms at RMH, then, I see them back up on the 5th floor. Trust me, they're not visiting friends.

As I watch this rhythm of treatment, I cannot help but feel like a stick that has drifted to the side of the river and gotten caught in a little whirlpool, no longer flowing, but instead, floating in a circle away from the progress of the main stream.

I cannot imagine how my next door neighbor feels, who is past Day +100, past the day they were to go home, and instead, on 5C. Our thoughts and prayers go out to Elizabeth, and her mom Marsha.

Sorry for getting off to a weary start. Something about the date and day turning over to the 20th and +80 hit me today. The last 3 weeks have been an utter blur, and the days just had no meaning. Now, I really feel like we're way off base, with no end in sight. Bella hit 15 kilos today. She is so big, it doesn't just hurt us looking at her, it hurts her just being that big. Plus, she is going through withdrawals, so she shakes like a leaf on a tree when she's awake. She cried today a couple of times. That was rough. We are moving into a new realm of pain and suffering with her becoming awake and aware of her pain again. Good times.

Okay, I think that's enough gloom for one day. Onto the good stuff. We changed her circuit and her dressings on her trach today. Her skin looked pretty good underneath overall, and I got to clean around the trach, which made me feel better. We got to clean her ulcer today for the first time since last Wednesday. That, unfortunately, is looking worse, but I really didn't expect any different. The good news is that when we roll her over to clean her head, the trach is infinitely more secure than the ET tube was, so she can hang out on her side as long as nursing has time to lend a hand to hold her (when she's off prisma). When she's on, we have to roll her the opposite way, and this causes the A-line to back up, so we don't want to leave her on that side for any longer than necessary.

She is continuing pressure support trials and tolerating them well.

After cutting out ketamine and weaning the rest of her sedation by 10%, Bella is in a tough spot. When she is awake, her heart rate is 180, her blood pressure is 105 over 80, and her respiratory rate is over 40 breaths a minute. So, she is AWAKE, and PISSED OFF UPSET. We think it is mainly pain from the trach, and withdrawals. However, when she sleeps, her heart rate drops to 120s and respiratory rate drops to 20 (good) but her blood pressure drops to 50s over 30s (bad). It's as if she's not far enough out from under the sedation to keep her blood pressure up when she sleeps, so we have to wake her to revive her. Hopefully, as the sedation wears off, her BP will be able to withstand sleep.

Tomorrow, we'll do dressing changes on her lines, legs, and arms, and ulcer. We won't do the trach again until the new, custom extendo-trach arrives. They had to special order an extension trach that will just be a thin tube for a few inches before it opens up to the big hole at the end, thus making it more comfortable and easy to care for with so much fluid on board.

Please pray that the docs can figure out a way to at least keep Bella somewhat comfortable through this difficult transition process. Please also pray that her body withstands the rigors of withdrawals. Please send us comfort as well as we watch Bella try to cry, speak, and make sound only to realize she temporarily has no voice due to the trach. As a musician, I am hyper-sensitive to sound. I walked in to the O.R. and saw a giant hole in Bella's throat and it didn't even faze me. What fazed me today were the awful sounds of suctioning the trach, and the awful absence of sound when I saw Bella open her mouth and exhale, then begin shedding tears, all like it was in a silent movie. I can't WAIT to hear her yell at me again. Imagining her laugh is just too far out from my view so close in the trenches. I'll just take the yelling at first and be grateful.

Please don't misunderstand the tone of tonight's post. Beneath the worry and concern I feel is a quiet but deeeeeeeeep-felt gratitude to have witnessed Bella's FIRE so intact today. I KNOW she's not giving up, and deep inside, her fire reignites mine. On top, there is a weariness as if I have to head back to the front lines right after a 3 month campaign, but today I smelled victory. I saw Bella's fire, and man, it's an inferno.

God, you understand all things, and feel all things. Thank you for making this mystery of living so palpable, so mysterious, that no matter how many days in a row I live, tomorrow always is 100% unpredictable. I may whine along the way, but I give thanks for this GRAND ADVENTURE called life. It is amazing.

P.S. Children's Cancer Research Fund brought PUNCH PIZZA up to our floor tonight. I told them that had I known last night they were coming tonight... I STILL would have gone anyway. Told you life is unpredictable!

P.P.S. One day, Bella WILL look back and say, "Yeah, when I was born, I had this rare condition, but when they brought me home from the hospital, it went away."

God night.

Ali made an art project out of me after pizza...