August 25: Day +54

I'm pretty sure today was a good day. Lots to share...

First piece of good news is the esmolol is out of the picture! They D/C'd it early this morning, and this afternoon, when they did another echocardiogram on Bella, her outflow obstruction was still gone! Her heart sounded great to the cardiologist, Dr. Pyles, so... where were we... oh yeah... It was as if 10 days had mysteriously disappeared, because while we eliminated this whole heart theory, we are still back to where we were 10 days ago to the T... blood pressure that is just too low.

The good news is that there is a buzz of brainstorming and consulting and just plain 'fire' going around the docs about Bella. The docs are so frustrated that they can't figure this thing out that they are calling everyone they know, consulting, literally racking their brains trying to find the solution. We like this.

Again, her problems are:

1) low blood pressure

2) kidney failure

3) acidosis (blood pH is too acidic)

4) fluid overload from leaky vessels

So, the next place we are poking around is in the world of sedation. We have gone up quite a bit on her sedation over these past 10 days and it could have a part to play in her low blood pressure. So today, we started by cutting one of her drugs (precedex) in half. From there, we are going to wean her back on the two narcotics (have to move slower on those to avoid withdrawals) she's on, versed and dilaudid, in an effort to wake up her body. Her mind is awake as evidenced by her pupils now remaining dilated, so we think if we wake up her body a little more, this will allow it to 'kick into gear' more on its own.

We are also going to install an arteriol, or "A" line in her wrist. This will measure her blood pressure on a constant basis and will be far more accurate than the cuff.

Here's a depressing fact:

Her right lower leg has been SQUEEZED by her blood pressure cuff over 5,000 times in the past 52 days. She gets her BP read at least 4 times every hour, and every 3-5 minutes any time we start up a new circuit. That's roughly 100 times a day, every day, for over 50 days now.

Here's a miraculous fact:

Not one of those times caused a blister.

Thank GOD! No, seriously, THANK GOD!

So, an A line will be put in by the bedside, and that will help us get a better view into her pressure.

We also weaned back the steroid hydrocortisone to 6mg every 6 hours, down from 8, which was down from 10. So, we are at just above a half dose of what she was getting, and I really don't think we'll be able to go any further, given her adrenal insufficiency. The goal is to wean 20% every 3 days if she'll let us. Dr. Pyles also doesn't think her hypertrophy is necessarily linked to the hydrocortisone. He said he could see it on the echo from July, which wouldn't have given the drug enough time to do the damage, plus she is a little old for that reaction; it usually occurs in much younger infants. So, if we need to leave a smaller dose running, I'm not as worried about it as I was a week ago. It's just amazing the pretzel you have to turn yourself into regarding whether all these drugs are good for Bella or bad for Bella, and at what doses for what period of time in combination with what other drugs... DIZZYING... almost. I am pleased that I feel like both Angelique and I have kept up with the conversation and the implications of the various drugs Bells is on. I remember when Rafi was going through her transplant and her daddy, Brett, would write about the various drugs and doses... I was really intimidated. I was intimidated when Marybeth wrote about Sam's drugs as well when Sam got her transplant. It really is much easier to follow when you're here all day focusing on nothing else... and have access to wikipedia on your laptop! lol.

SO, there is a "second wind" in the air about "solving Bella" on the unit which we feel really good about. Where's House when you need him? He would have had this whole thing solved in 44 minutes, LOL. Oh, Hollywood. Thank you for completely distorting reality for us all.

In other news...

Today, there are no pictures largely because I was in front of cameras instead of behind them. Today, we filmed a DVD for Bella of mommy and daddy and Ali. The Child-Family Life dept. coordinated with the music therapist (yay!) to assist us in shooting a video for Bella that could be played in her room when we're not there. This will be particularly good distraction material when she is out of her drug induced coma, but the auditory stimulation in the meantime will be beneficial.

After the video session, we had a photographer from Now I Lay Me Down To Sleep come and take portraits of us with Bella. Our social worker thought of this last week, and I realized we had never done a family portrait with the four of us before we left. So, a wonderful photographer turned Bella's room into a portrait studio and shot really sweet pics of Bella, and each combo of us with her, as well as pics with all of us together. It was quite the yoga session to squeeze us all in around her, but it worked. It's probably gonna be awhile before we get the pics back, but I promise I'll be sharing them as soon as I get them!

I had to bribe Ali with ice cream to get her to take some extra pictures at the end of the session, so afterwards, we all went to Punch Pizza for dinner and Dairy Queen for dessert! It was a fun family day in the middle of the week. Thanks for the ongoing prayers, thoughts, and intentions.

One last request, if you haven't commented, would you take a minute to do so? you don't need to worry about what to say. It's not so much WHAT you say, it's THAT you say anything in the first place that touches us. That you take the time out to be a part of our life makes our day, one day at a time. Also, would you be willing to share about our blog on whatever social network you are on? We would be most grateful. Thank you, and good night.