October 6: Day +96

Peepers!

Heaveno!

24 hours is plenty... whew!

Today was non-stop. Circuit change. Lines change. Arm dressings change. Sutures in, sutures accidentally out. Sutures in again, sutures out again. Gel foam in... I'll get to it all.

I'll tell ya, we are now using heparin in the Prisma circuit instead of citrate, and it has made all the difference when changing out filters. Bella used to HATE it when we would change her filter. It was quite an ordeal. See, every 72-96 hours, we have to change the filter on her circuit (I've probably told you this before). Whenever we would start up the new circuit, Bella would either get tachycardic or hypotensive. Now, on the new heparin circuit, she barely notices when we turn it on. We have also tweaked the process a little where we go back on just before her scheduled ativan and methadone, and we go on at a really slow rate, then ramp it up over a minute or so... like we're sneaking it on so to speak, and it works!

We went back on the new circuit a little behind schedule at 12:30, but it was all good.

Next up, new sutures. Bella's med line and her A-line were missing a suture in one of the wings on each line, and the other remaining suture was pulling out in each, so we got surgery to come up to re-suture them. The problem was they never told us when they were coming. I made the mistake of not setting EVERYTHING up in the morning, thinking naively that they would answer one of the many pages the resident made, trying to ascertain what time they were coming. Nope. They just walked in the door at 2;30 like it was nothing and BOOM! "Hey, let's do this!" Problem was, I wasn't ready. So, I ran around trying to get stuff ready on the fly, which is not my style, and the place got pretty disorganized pretty quickly. We got the new stitches in, the surgeon left, and about three minutes later, it happened.

I can't even say exactly how, but somehow, a portion of the a-line tubing caught the corner of the cloth under her arm (the chuck) and before I could blink, I was looking at the A-line hanging upside down from her arm. It tore one stitch right out of her arm, and it tore the skin along the wrist line above the other stitch. So, while the second stitch was still in skin, the skin was no longer attached to her arm.

Despite all the progress Bella's skin has made, it is still as fragile as warm butter.

So after trying to re-stitch it, the wave form of the A-line disappeared. We wrapped the line, hoping it was just spasming, and let it hang out for a while, no dice. No wave form. So, one of our stellar residents, Andrew, tried to take out the sutures and start over, but no matter where we tried positioning the line, we couldn't get a wave form again. We even brought in Dr. Kooy, the attending ICU doc, and both he and Andrew tried to run a wire in and replace the line, but no dice. So, we lost the A-line.

Andrew, one of our amazing current residents, in action trying to save the A-Line!

On top of this, Bella's hemoglobin and platelets are low, and she is on heparin, so she is leaking blood and bleeding from anything that is open, including the new suture sites. So, it was A MESS trying to put her lines back together. I had to completely redress both her med line and the A-line twice (then cram gel foam in the x-A-line hole), they were bleeding so much this evening.

I want to be mad about the whole thing. I want to be mad at the surgeons for not calling back. I want to be mad at myself for not prepping in advance, knowing that surgeons like to just come in when they have a minute and can't return calls easily. I want to be mad at myself for trying to sneak an hour of side work in when I should have been tending to Bella. I could have easily been ready if I had put my computer down (even though it was the first time since Friday I had logged in to do any extra work in the first place).

However, I'm noticing that when I allow myself to BE mad at either myself or the surgeons, one, it doesn't change what happened one bit, and two, I feel lousy. I am noticing that getting mad over what has already transpired really isn't very useful to me. I don't really like it, and it's not bringing the A-line back. Still, why is it that I can't just shrug it off? I HATE to ever admit that I might have made a mistake. I put more pressure on myself than you could imagine, and when I make a mistake at anything, ESPECIALLY Bella's care... man, it messes with me BIG TIME. I think it's because I want to think I am perfect and everyone else is to blame for every mistake that ever occurs. It's much easier to point the finger at others, and when I can't, I take it out on me. Overly critical? Maybe. Human nature? Probably.

I like to say that I am a "Recovering Perfectionist." It's not always easy admitting I'm not perfect, but here goes... :P

I am not perfect.

There. I said it. The word is out. Now, the whole world knows my big secret! LOL. I'm pretty sure I'm more worried about it than you, so I'll go ahead and drop the whole thing now. I just thought it would be interesting to share about how making mistakes as an adult, especially at work (I consider my role at the hospital with Bella my principal work right now), gets under my skin. Can you relate?

Mommy getting to hold Bella up today!

In other news regarding Bella's ongoing blood pressure roller coaster, it was a little less of a coaster today. Going off the circuit actually helps Bella's blood pressure in a couple of ways, so this morning, instead of having out normal toilet pressures, we had generous pressures. By the end of the day, we will probably be even for the day regarding fluid in and fluid out. This is a victory on a circuit change day, because back in the day, Bella would be up 300-700 mL in a circuit change day. We're learning! I hope that this learning curve will serve baby Elle now that she is on Prisma as well.

We held off on administering etanercept today. There is a similar drug, infliximab, that might be a little more accurate in targeting the exact nature of Bella's elevated TNF receptors. Dr. Wagner wanted to do a little research on his own before giving the okay, so we are waiting on him and his thoughts on the drug before we administer it. The good news is that Bella's life isn't in danger, so we don't have to rush into a decision on this.

In other news, Bella did a 12 hour pressure support trial today and did great! She was on pressure support from 8:30-8:30, and she'll rest overnight, then we'll do it again tomorrow. We are moving toward a point where we can take her off the vent real soon! We are excited that we are making forward progress here, even if we are a little stalemated on the blood pressure saga.

So, tomorrow, there will be lots of dressings to redress no doubt that will be soaked with thin bright red blood, and we'll get a visit hopefully from Dr. Sidell to place a new A-line in Bella's right wrist. The honest truth about the A-line is that it was on borrowed time; most A-lines peter out by this point in their lifespan anyway.

Thank you ALL for stepping up with the letters to Bella today! Holy Cow! We didn't finish reading them to her because things were so hectic for so long today, but keep 'em coming! We are so lucky to be at the center of this experience. To learn to love someone from far away....

Oh! I forgot to tell you this cool story....

A friend of mine set up "Google Analytics" on our blog so we could see where people visited from, how many people visit, etc. Well, I was looking at the visitors and length of time on the site today. Know what I noticed? Thursday and Friday, September 23 and 24, there was a SPIKE in activity on the blog.... like HUGE, not only in the number of visitors, but the amount of time they were on the page. That Thursday was the day that I felt abandoned by the ICU and BMT docs. That was when you started writing to Bella. THAT was when Bella's blood pressure mysteriously JUMPED and became hypERtensive after being 30s over 20s for Tues and Wed of that week...

Know what I saw when I looked at the graphs? I saw YOUR energy literally lifting Bella's blood pressure practically overnight. It was fascinating. I don't bother telling the docs this, and I know that correlation does not automatically indicate causality, but it sure made the hair on my arms stand up a little, and even better, it lifted the weight of my heart in my chest. It reminded me that there are powerful forces eminating from outside of Bella's room that are impacting her as much as the forces inside her room. THANK YOU for BEING that force. I am tired at this stage of this journey, and you may be, too, but PLEASE, don't give up. I need your strength when mine fades, as it has these past two weeks. Thank you for refilling our tanks, day in, and day out. I don't know what I would do if there weren't any comments to read to Bella. I am so grateful for you, I can't even express it here. It is a feeling that is beyond words.

Please, keep holding this vision with me...

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."

God night.