July 7th: Day +5

Ali's bear keeps vigil over Bella...

Alright, well another long day in the PICU.

I walked in this morning to Bella's head gear hanging off her chin and drool hanging out her mouth. Nice. So, I asked the nurse (who was the same nurse as yesterday... but will NOT be the same nurse tomorrow -wink-wink) to page RT to help me get things cleaned up. She reacted like it was a problem for her, and then got uppity about how I wasn't covering Bella's new line correctly, and actually put an email in front of me with highlighted text and pointed to where it said how I was to dress her line. Swear to God, I'm not kidding. Nice start.

So, RT and I got to work redoing Bella's headgear again and tried a new technique today that goes above Bella's ears instead of below. It still moves and slips when we turn her head or roll her to either side, so it's not much better, but it's a slight improvement. If ANYONE out there knows an EB friendly way to secure an endotracheal tube to a 13-month-old who has a small mouth and 4 teeth, please let me know. This current get-up looks like something out of M*A*S*H.

Today, I had the opportunity to give feedback on how it's going over here to both the daytime and nighttime charge nurses, and an administrator from the BMT unit. I left no stone unturned, I promise. The main points I needed to make were:

1) This process is so stressful, I don't need staff making it more so with attitude issues.

2) Don't be annoyed you have to care for my kid like she and/or I are high maintenance. Guess what? EB IS HIGH MAINTENANCE. You get to go home at the end of your shift. We live with it, so get over it and act like a professional.

I got good feedback from the three women I spoke to; let's hope it trickles down through the RT staff and to a lesser extent the nursing staff.

Anyhow, 6 hours later, we finished up with her headgear and her dressings changed out. It was a long process. I missed my partner in dressings, Angelique, today. She is back to work now. Bella's new wounds from Sunday look pretty bad, but nothing to worry about from an infection point of view. The hardest part about wounds right now is having to take pictures for Dr. Tolar. When I do dressing changes, I have to disassociate myself from the fact that what I am looking at is my daughter. I just see a knee, a foot, a leg, a hand, and treat that object as such and this helps me deal. When we get her dressed at the end, then the magic happens and I suddenly see our daughter again. Even through all this, when I am looking at her through my own eyes, I minimize that she has it bad. I think, "naah, she doesn't have it as bad as those other kids online I read about. I relate to her skin like it was when she was just a couple of months old and relatively wound free. Well, let's just say the camera doesn't lie. When I export the pictures to the thumb drive for Dr. Tolar, I see them in a blindingly objective light, and I realize how serious and involved her skin already is at 13 months. I had only taken pics of her wounds twice in 1 year, and now I am taking them every other day. It's been a tough adjustment.

I just HAD to share this picture taken by Erin Spector. Check out how beautiful Angelique is, and check out Bella's leg! (I miss holding that big heavy lug)

Well, Ali told me she wants me to walk her to school in the morning, so I'll leave here first thing and meet her at RMH, walk her to school, then high-tail it back here before anything else goes on. I am on full sentry post, but have made some allies over here. The good news is that the resident on the day shift is pretty on top of things as is the head of the ICU.

The socks of the day...

For dinner tonight, the wonderful Care Partners program sponsored Thai and Chinese food in the family lounge on our floor! Oh man, after days of powdered oatmeal and macs and cheese, we had fresh salad, chicken pot stickers, beef and broccoli, and tofu curry with rice... oh, the flavor fiesta! Can you use a spanish word to describe an asian dining experience? How do you say party in Chinese or Thai? Anyhow, we stuffed our bellies, then came and hung out with Bella as a family for a while and Ali continued her masterpiece on the window with her special window markers that the Child-Family Life Dept. gave her.

Ali holding Bella, me holding Ali...

Other good news is that Bella hasn't run a temperature in a couple of days now, so we like that.

Other bad news is that Bella's heart rate has been elevated all afternoon and night, and despite a 30 minute music therapy session, I could not get it down like I did last night. In her nightly chest x-ray, they discovered a portion of Bella's upper right lung is not filling. The condition is called Atelectasis, and I could see in her x-ray from last night that the upper lobe of the right lung was clear, and in tonight's scan, it was so opaque you couldn't see through it, almost solid. One of the symptoms is elevated heart rate. So, at least now we know the culprit for that. So, we'll discuss a plan in rounds in the morning.

Okay, I'm going to try and make myself sleep now. It's well on the way to 3 am and I just can't seem to turn off the sentry mode. Thanks again for all of your encouragement and the pep talks after yesterday's post. I really appreciate all of you out there rooting us on. It helps SO much in such a stress-filled time. Good night.