October 5: Day +95

Heaveno!

Oh, the roller coaster continues!

It was like deja vu today! Morning blood pressure in the toilet, fluid, pressers, stimulation... and poof! an afternoon and evening of STELLAR pressure... drop the pressers back, pull the fluid back off, and end up back at square one! Oi vay. It's an emotional roller coaster, I tell ya!

So, I've been asking the attending BMT doc about other off label drugs we might be able to use for Bella. Are there other cytokines like VEGF that might be elevated that might have a drug that treat it? A cytokine is essentially a messenger protein floating in your blood. Well, turns out, Bella's TNF levels are really, really high. TNF is a cytokine that induces inflammation, and is the "master receptor" for inducing inflammation. Hmm.... inflammation induces leaky vessels. So, if we can lower her TNF levels, we may end this dance once and for all. Sooo.... turns out there is a drug called etanercept that is used often to lower TNF cells. Sooooo....... tomorrow morning, we break out the etanercept! It is very exciting to working with doctors who are willing to think outside the box and treat the patient that is in front of them, not in a book. This idea is coming from the same doc who wrote her off upon his first visit... you remember... Dr..... D...

I don't call him that anymore, because he has been on board, thinking, researching, and working for Bella for the duration of his rotation, and we have long since gotten over butting heads that first day. I wrote him a long letter of thanks and apology about a week ago and we are on the same team now. There's a great saying I learned long ago....

"Would you rather be right, or productive?"

One of the best gifts I was ever given was a free ticket to the seminar "The Landmark Forum" back in 1998. In that seminar, I learned (shock) that I am not always right. LOL. I learned that it was in fact plausible that in areas of life that weren't workin' so hot, that I might be the one who was "wrong," for lack of a better term. That was really liberating, because being terminally right had cost me countless relationships. Angelique was the first woman I dated after doing that seminar, and I know that she never would have put up with me if I tried to pull "being right" all the time on her! Instead, our relationship is built on partnership, respect, love freely expressed, and dreams realized. A pretty cool foundation.

So, I was happy to apologize and give up being right about him so that we could create a working partnership that would benefit Bella. You could call it "swallowing your pride," "putting your ego in check," or whatever. In order to have any relationship improve that is tanking, someone has to take the first step and be willing to give up being right in order for there to be any room for a new relationship to blossom. Whether or not you really are right is irrelevant. Like the saying goes, "Would you rather be right, or productive?" Said another way, "Would you rather be right, or in relationship?" Bottom line, you always have a choice.

How cute is the pumpkin hat? Thanks to Janet (Jack and Molly's Nana) for knitting all of us hats for the winter, and for infusing love and a prayer into every stitch. What an amazing thought... someone hand stitching something over hours, praying and loving the whole time. I never saw sewing or knitting or crocheting in that light before. Thank you, Janet, for opening my eyes to something so wonderful.

So, tomorrow, we throw a couple of new stitches into two of her lines where the stitches have either fallen out or have been pulled out (ouch - good thing for sedation and pain killers!) We also have a scheduled Prisma circuit change, and arm and ulcer dressings. It will be kind of a busy day.

My favorite part of the day? Reading your words of encouragement to Bella. In fact, I humbly request that more of you write to her. Please, come out of the word work! You invest the amount of time (really only about 2 minutes) to read about her every night, please invest a couple more to write to her! It is the one time of the day that I really feel like a parent. I get to turn my heart on and pour out my love through your words. I promise you... I read each one of your posts with as much intention and feeling as I can, as if I was the author, as if each word were medicine for her mind, body, and spirit. I am so touched by the generosity of your love, kindness, authenticity, and support.

(Don't worry - I don't read her the occasional oddball comments - she doesn't need that - there are a few in every group, and since statistically speaking, if there are around 1,500 hits a day here, we're bound to attract a few goofballs who think negative comments and criticism somehow will either influence me or improve the situation to their liking... silly people :P)

Anyway, I spend either a chunk of the morning, or afternoon, depending on Bella's energy, holding her hand and/or head and reading to her. When I am doing all of the wound care and various other things to her body, I have to turn off my heart so that I can think and act objectively, clinically, and clearly. For example, when I have to change her trach dressing, whew, that's a tough one. I have to slide this big 4 inch by 4 inch dressing under and around the trach while someone else holds it in place. All the while, Bella is craned back on a roll under her shoulders to expose her trach site (It doesn't see the light of day in any other position due to her fluid overload). This position makes her trach squeak and it makes just this very weird, 'not-normal' sound. I have to just think about the dressing in my hand, and the trach it needs to line up exactly under. I can't think about whose trach it is in the moment. I wouldn't be able to function. I'm sure in time, it'll get better, like dressing changes did. I imagine it's no different for someone who has to get used to changing a colostomy bag, an artificial limb, a glass eye, etc. At first, there is the shock of adjusting to what might seemed pretty messed up at first, but after time, it becomes "the new normal." Anyhow, until the trach is normal, I have to clamp down hard on my thoughts and feelings in order to do my job.

However, when I get to read to Bella, all of me gets to be with all of her. This is that very normal, natural relationship any parent wants to have with their child. I could read her any old story and I have done that many times, but Angelina Ballerina is not written for her, to her, with the intention of energizing, supporting, healing her. Many people wish there was something they could do to help, to contribute. Well, here are two things.

1) Write to Bella.

2) Sponsor Team Bella in the CHOC Walk. CLICK HERE to do that.

With your help, one day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

Bella's fabulous socks of the day!

God night.

Ali rockin' to Katie Perry on the Wii "Just Dance" game last night...

This was voted simultaneously the best pose from Ali and the worst dance move ever from daddy by mommy and Bella's night nurse, Linda. I promised I'd post the silliest one... Guess I can never run for public office now... especially because... we were dancing to... The Spice Girls... Yup. It's true! While I didn't pick the song, I didn't sit it out, either. I somehow just felt dirty afterward.

Ali with Annie the therapy dog and a fellow RMH guest tonight...

Arts and Crafts night here as well tonight!