July 6th: Day +4

Hello!

I don't know where to start, so I'm just going to recite chronologically the events since I was last typing and that way hopefully I won't miss anything.

So, for the past two nights, I've remained with Bella till roughly 12:30 am. I stay that late because we are in a new unit with new night nurses and I want to get to know them and have them get to know Bella through me before I can allow myself to sleep remotely peacefully in her old room. Last night, the nurse was very young, and had never seen an EB kid before. Remember, we're no longer on the BMT Unit, and despite the promise of the nursing staff that we'd get BMT nurses over here, the fact is only certain ones are ICU trained. So, 0-2 with BMT nurses overnight so far. No big deal, there's not much to go over from an EB point of view besides:

1) Nobody lifts or moves Bella for any reason without me in the room. If you need to, call me: I'm just down the hall.

2) Diapers (luckily) are handled like most typical kids. Bella's diaper area has mercifully been spared (so far) from blisters, except for her hip flexors, which are already covered with transfer. I stick around and change one diaper for them while they observe to get a sense of how relatively easy it is.

3) DO NOT stick anything other than a foley catheter into Bella's mouth to drain her secretions. Period. No exceptions.

4) Feel free to ask as many questions about Bella or EB, we are happy to help teach.

5) Seriously, if there are ANY concerns, just call me, my phone is by my head, and I'll be here in 30 seconds.

I could tell the nurse was a little nervous to have Bella, and I told her she'll be fine, just call if she has any concerns about anything.

Guess I shouldn't have been so offering.

At 4 am, the phone rings and it's the nurse. Problem is, Bella's old room is the black hole of cell service and the call drops. So, I truck on over and she says that she has noticed that Bella's face has broken out in some sort of rash. So, I go in for a closer look. It's Bella's milia, which are tiny white raised bumps that grow out of prior blistered or wounded areas.

She's had it for quite a few months, and for sure since 11 pm when the nurse came on. Guess she didn't notice when she came on duty and assessed her patient with her evening nurse. I could tell she felt like a total heel when I explained what it was. She realized that it had been on Bella all night, and that she only noticed it at 4 am and thought it had just popped up. Poor girl, that must have really startled her. The phone ringing next to my head at 4 am really startled me, too.

Prior to going to bed, we agreed that "the great bed swap" was going to occur first thing in the morning. The scale is broken in her crib and they need twice daily weights, so Bella needs to be moved into a crib with a working bed scale that can weigh her without having to lift her out of bed. The nurse insists that the best time to do it was at shift change when the most number of nurses would be there. Never mind that that its when they are all giving report to each other and a little tied up. So, I ask her what time should I be over for the move. "7:30. It'll happen by 8:00 at the latest." Now, the docs don't round over here on the PICU till like 9-9:30, so I am really sacrificing a couple of needed hours of sleep to be there that early, but no one's lifting Bella but me, so that's the plan.

I roll into the room having just stuffed instant oatmeal down my throat at 7:32 and it becomes pretty obvious that we are NOWHERE near doing the bed thing. Nice. So, I hunker down on the window sill with my coffee and stare out into the morning green and blue. Somewhere along the way, maybe two hours later, we still haven't moved the bed, and the morning nurse says, "Did anyone check the battery (on this bed)?"

"What battery?" I ask.

"I'm pretty sure it takes a 9 volt battery for the scale to work. I just can't remember where you change out the battery," she replies.

Can I just tell you how many people have been trouble shooting this stupid crib for days now, and NOT ONE of them knew it needed a *%^#'n battery?

So, off goes the nurse to try to find a 9 volt battery. Now, don't get me wrong, I am thoroughly interested at this point in the magic battery theory. It would save a MASSIVE pain in the kiester from occurring. To get Bella's IV lines over one post, her ventilator tube over the other, while holding her in the air, totally dead weight, while they wheel one crib out of this tiny room and wheel the other in, then zero out the scale, then place her down... oy vay! Bella is one heavy baby when she's alert!

The nurse returns with a battery. At this point, being the handy guy I am (HAHAHA... I am the LEAST handy go you know, I promise), I figure I better find this mystery battery dock on this crib and solve this great caper. So I get on my back on the floor and we lift up this big, heavy, bottom shelf on the crib, and lo and behold, there is this totally unmarked plate underneath held in place by two screws. Luckily, I can unscrew them by hand and BOOM! A 9-freakin-volt battery pops up! I couldn't believe my weary eyes! So, we switch out the battery and BEEEEP BEEEP! The crib scale magically comes to life! HAHA! VICTORY IS OURS!

Seriously, it was the best moment. So now, the whole process just got 10 times easier, and life seems grand. At this point, I figure the day is going to be a walk in the park. No bandage changes today, no crib change, Ali is at pre-school, mommy's at work back at RMH, today's gonna be quiet, right?

We all know better than to actually believe THAT!

I slip out to have a little lunch and watch my underdogs, The Netherlands, win their semifinal match and head into the World Cup Finals, and when I return, feeling nice and "respitized" (that's a fancy word for getting some respite, or relief from caregiving), it hits the fan.

1) Remember rule #1 above? I left the nurse with those same instructions. I came back to see Bella rolled over on her side, her vitals all elevated, and her head gear sliding down her chin and her vent tube 1 inch out her mouth. The nurse explained that she just had PT. PT? (Physical Therapy)? Bella is on a ventilator and paralytics. What is PT going to do? Passive range of motion? Bella's legs and hips are covered in wounds, and those wounds are covered by bandages. Neither the nurse nor the physical therapist know the location or status of those wounds. I looked at the nurse. She reads my look and says defensively, "But she said she worked with Bella over on the other unit!" Yeah, when she was walking and talking. (well, not exactly walking, but sitting). PT had dropped by a few times while we were still over on 5D and Bella was too sick from chemo to do anything besides lie on her stomach and wail, so I was BAFFLED to hear they came by over here and attempted to work with her while under sedation, and without me, especially after the instructions I left the nurse.

2) The headgear. I look at the vent tube coming out of Bella's mouth and it is literally hanging a full inch out of her mouth from where the RT (respiratory therapist) anchored it the day before. Why am I the first one to notice this? So, I tell the nurse to page RT, and we get to work repairing the line and removing and replacing the dressings underneath as they are completely drenched. The RT looks at the line and is worried if the line had moved any more that we might "lose the line." Those are not 3 words I wanna hear, so we get into hyper-focus mode and clean things up.

3) P.S. in the seconds before I assess the mess that Bella is in and hear about PT, I am told that I need to go see the charge nurse on 5D because they need Bella's room and I need to move all her stuff out. Where? She has a 5' long, 6' high EB cart filled with supplies that won't fit in her PICU room. Where is that supposed to go? Now, I get a chair to sleep in. Sweet.

Good times. My inner control freak is trying to convince me that I can't leave this dumb room, because bad things happen when I leave to take care of myself. That's no way to be thinking, but after the mess Sunday, and now today, my inner control freak is freaking out. Calm down, inner control freak. That inner control freak is pretty arrogant. He thinks that his mere presence will change the course of history. Let go, and let God. Let go, and let God.

Let go, and let God.

Do you ever struggle with letting go and letting God?

In other news, Ali's first day at pre-school was AWESOME. She loved it, and they called Ang at lunch to tell her she was having a fabulous time. Apparently she walked right in and just started talking to the other kids. Her teacher told Angelique, "Woah, I guess we don't have to worry about her being shy!"

Our little girl is growin' up so fast!...

So, in what was pretty much exactly how we envisioned it, Angelique walked Ali to pre-school, walked back to RMH and worked at the nice desk in our suite, worked out, walked back and picked up Ali. They strolled back to the RMH, had dinner, played with therapy dogs, then came and visited with a to-go container of dinner for me. They visited for a couple of hours, decorated Bella's room and colored on the windows with special window markers, and then had to get Ali to bed. It's officially a school night!

Ali and the therapy dogs at the RMH tonight... CUTE!

The artist at work decorating Bella's windows...

I am so grateful that this particular vision played itself out today so close to how we created it.

God is good. All the time!

Ali gave Bella her bear to keep Bella company tonight...

Tomorrow: bandage changes. The trauma from Sunday is indeed quite traumatic. I won't be sharing any photos... I can't even handle them, and I'm "used" to seeing Bella's wounds. Just keep focusing your prayers, thoughts, and intentions on Ali's cells growing and integrating with Bella's. Also, please say a prayer for Tripp, our EB brother in New Orleans. Tomorrow afternoon he is having a pretty amazing surgery to help his eyelids heal so that they no longer hurt his cornea. They are doing an amniotic membrane transplant.

You can learn more about Tripp at:

http://randycourtneytripproth.blogspot.com/2010/07/prayers-for-surgery.html

Blessings to you all!

P.S. Ang is NOT in the hospital, I was recounting an event from last spring. She is fine.