September 21: Day +81

Power to the People! The dreaded A-Line shortly before...

Heaveno!

We learned how to suction a trach today. Yippee! One more thing I now know how to do that I never wanted to know how to do. I recognize that if I want my kid to live, I need to know how to do this, so, let's do this. Your kid's life is a powerful motivator.

I'm not sure if Bella had a good day or not. She had a good nap this morning, and her pressures were okay throughout the day. However, this afternoon while we were doing bandage changes, things got a little weird. Bella weighed in at 15.8 kilos today. Not good. She is literally bursting. She has blisters that simply weep/leak fluid constantly. She also had a little blister on her inner thigh next to her biopsies BURST and ooze the most unbelievable amount of fresh blood. Then, we found out her platelet counts dropped to 11,000. That's really low for Bella. I applied direct pressure on the site over the bandages like a good boy scout. It looked like she took a bullet to the thigh there was so much blood, no joke. Like I said, it was WEIRD. We figured that it was one of her biopsies that oozed, so we got more gel foam to pack it with. You can imagine my incredulity when they were all intact, and this little 2 mm wide blood blister just a centimeter away was responsible for all the carnage.

Then, as I unwrapped the rest of her leg dressing, Angelique noticed Bella developed some nasty spider veins on the inside of her left knee. Now ladies, help me out with this; I don't understand spider veins. Whatever their cause, they sit conspicuously below where the blood burst out of Bella's leg. Are the two connected? No one knows. The BMT docs were speechless. They had no idea or clue. Great, another Bella anomaly.

Then, as we were dressing her arterial line, the wave form started to get smaller and smaller, and Bella's pressures started to dip. The arterial line, if you recall, is a line stuck in her radial artery in her wrist to measure her blood pressure in real time. The thing with it is, like most lines after some period of time, they cause the vessel they are in to collapse or spasm despite the medication given to avoid and control this.

So, we put her blood pressure cuff back on her leg to get a reading off that.

Couldn't get a reading.

That was at about 6pm.

I left at 9:30 pm and we had pretty much lost the A-line completely (it was reading 30 over 20) and we were unable to get a cuff pressure at all.

So, we are going into the night totally unable to measure Bella's biggest problem area; her hypotension. Her arm is so fluid overloaded that the cuff can't read a pressure from there either. Judging by just looking at her, her heart rate is elevated by about 50 points and her respiration rate is elevated by about 10 breaths a minute, which suggests her heart is having to work over time to compensate for something. Her CVP (central venous pressure... measures how much volume is in the circulatory system) suggests that she is low from where she was last night, but still well within what was a normal number (11-12) on any other day for her. However, her nurse mentioned that last night she did really well when it was running at 15. This suggests that she is comparatively dry intravascularly compared to last night. Combined with an elevated heart rate and respiratory rate.... sounds ... like.... she .... needs...

more fluid.

And the cycle continues.

What we observed yesterday and for most of today was that while Bella is awake, her blood pressure is responding appropriately to stimulation, and maintaining a safe baseline. However, when she sleeps, she is no longer able to keep her own blood pressure elevated and needs help. In addition, she is not yet ready to pull ANY fluid off her through dialysis. They snuck only 60 mL of fluid off ALL DAY today, and it looks like it was too much.

Lights are on, and the monkey is attentive...

So, tomorrow, we are going to try a couple more things. First, we are going to set "activity" and "rest" hours for the staff to observe. We are going to try to mimic Bella's normal sleep/wake cycle as best we can in an effort to let her regain control of that circadian rhythm and regulation. This will be fun. I can't wait to kick out doctors during her nap time. I am SO looking forward to this! I will be bouncing any and everyone who tries to see her from 10-1 and 5-7. By 9 pm the evening nurse BETTER have all her 8 pm assessments and cares done because lights are going out for the night. We are also going to start her on melatonin to see if that helps her get back on track.

We may also try to "ride the fader" on her pressers during her naps to see if we can't give 'em a little bump during nap time, and roll them back when she's awake. We are really splitting some serious hairs here, but it is Day +81 and we have a pretty sick kid on our hands, so we need to PULL OUT ALL THE STOPS to make sure we give her EVERY SHOT at recovering.

Lights get dimmed, and the money is already partying!

Yesterday, I was not worried for Bella or about her. Today I am. We are in a dicey place where we have begun to take away her sedation, and as a result have to endure some pain, discomfort, and a whole lot of agitation and stress to the body. I am worried that while her spirit is strong, I fear that her body is not equal to the task. I worry that all the stress we are putting her through trying to wake her up is going to exhaust her and she''l end up getting sick, or something is just going to give out. Normal fears as a parent, I know.

There is an amazing amount of exhaustion present in me as I write having just tried for hours to 'control' or 'regain control' or even 'take control' of the situation with Bella. Again, the biggest conundrum of this journey is this: How do you break your back, strain your brain, and leverage your entire spirit to the enth degree over every little detail of your baby's care, and remember all the while that in the end you have absolutely no control over the outcome?

How do I Give Up (to God) without feeling like I've given in? How do I continue to fight and yet be detached from the outcome? How do I stay committed and not be attached? I know that God is in the results business, and that's not my job, but it sure is easy to feel like it is.

So, I go to bed tonight with an opportunity. I am sad, but I am choosing not to be worried. Why? I stood in Bella's room and did everything I could think to do and had every conversation I could think to have, and none if it made a difference... when I left, we had no way to measure blood pressure. If I can't force an outcome by her bedside, my worrying probably won't be any more effective over here at RMH. So, I can choose:

1) worry, and not get the rest I need to wake up and do it all over again tomorrow.

2) Leave it in God's hands, go to bed, rest, and be strong for my Bella tomorrow when I wake up in the morning.

I think I'll let God be "the night watchman" for me tonight.

He's better at it than me anyway.

We have a mantra in our home here: "Keep moving." Just keep moving. It's how we get out of this house every morning despite the mountain of fear, sadness, anxiety, exhaustion, etc. any of the three of us are dealing with, and it's how we get our little behinds in bed every night to honor our selves to be there for each other the following day.

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

God night.

Bella's Fabulous Socks of the Day!