Wednesday, July 7, 2010

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.


  1. Bless you all...prayers and thoughts for you today..

  2. Continuing to pray for Bella's healing, for wisdom for docs as decisions are made on her behalf and for the rest of the family.

    May God give you peace that surpasses all understanding as you fight this beast of a disease!

  3. We are praying for you guys. Bella is a fighter!
    One quick question, They let kids in to see their sibling in ICU? I think that is wonderful. I am assuming based on the pic, which was too SWEET.

    See you guys in a few weeks!
    Joy Thornton
    Mom to Payton 5 years old RDEB

  4. Hi Tim: So proud of you for standing up for beautiful Bella. I love the,(get over it and act like a professional.) You should print that up and hang it over Bella's bed.
    Love the picture of Ali holding Bella's hand. They have a very special bond and it will last them a life time.
    Extra prayers for Bella and extra prayers for you and Ang too. Hang in there. God Is Good. Love Leah's Nana

  5. Still praying for and thinking of Bella. I know you must be so frustrated and you should NOT have to be dealing with attitude. People just don't get it. Stay strong, keep fighting. Hugs to all of you.

  6. Praying for Bella and for you and your family! Stay strong from Dothan, AL!

  7. That picture of Ang and Bella is awesome. But not as great as the one with Ali holding her hand. That's the model of tenderness your nurses need to see. Perhaps Ali can train them?
    Prayers for everyone, including the staff there, and for Ang back at work & you for staying strong. Treasures for Ali on the way. ;) please let me know if I can send anything from home (pick Up Stick?)

  8. It makes me so mad that people in the medical field, one that is supposed to take care of people, is being so arrogant and rude! Seriously, if you don't know how to be kind and compassionate, don't work in the PICU! I will continue to pray strength for Bella, you, Ang and Ali.

  9. Praying for your Bella!!
    Tripp's Grammy

  10. So I tried to comment before we went to bed last night, and my internet shut down. Ugh. First off, you are hilarious. Your sense of humor is truly God-sent :)
    You two are doing such an amazing job. And I'm so so glad that you are able to tell the doctors and nurses how you really feel... there is no excuse for attitude or poor nursing in the situation that you guys are in. I get all worked up myself when I read that. No one will ever understand the amount of emotional and mental stress (aside from the physical stress and no sleep part).
    I look at it this way- Us EB parents have a WHOLE new outlook on life and what's important :) We are the lucky ones, right?
    God Bless You and your beautiful family. You are ALWAYS in my prayers.
    Courtney Roth

  11. Praying for Bella and your family.

  12. Good Morning- Thinking of you Bella this morning. Stay strong, keep fighting sweet girl. Sending you love, strength and peace for your body to heal. You have a beautiful family that is surrounding you -rest baby girl.

  13. Sweet Bella and Ali...still praying. But now I have a question. I've done the vent tube on a 5 month old who is knocked the heck out on Versed in the PICU for several weeks things with my daughther, not NEAR what you guys are going through. I just wondered who sent an email and who did they send it to and how did that nurse get it and what exactly were you not doing right. I mean come on. Clearly, whatever it was, you are the expert, why do they not get that. And you are so right, they go home, you don't. Good for you for keeping your vigil!!! Praying for all in Mississippi!

  14. When I was in the childrens hospital one of the surgeons, not even my surgeon, kept changing my orders he didn't care that it made me sick-er. It got to the point where my mom forbid him from participating in my care. So, sometimes, when it's whats best, telling the professionals how you know better, is a good thing.

    Praying for you. *Gabby from Wyoming

  15. Stay Strong. Your posts are so well written; like the reader is right there with you. No apology needed for your manner at the staff meeting (not that you were). You are your child's #1 advocate and you (and your wife) are the most informed about her EB. Your strength will help Bella heal; she has one beautiful family and she is one beautiful little girl. Many prayers.

    Ali looks like she is thriving; despite the hard situation. You and your wife are doing such a delicate balancing act between two equally important daughters. They will be very proud of that- when they grow up and read these posts. They will know the true character and strenght in their family and of course, the LOVE that is so evident.

  16. I absolutely love the picture of Ang and Bella; it is such a peaceful picture.
    Ali is an amazing sister and that pic of you three melts my heart. We miss you guys so much and can't wait to see you all again.
    Praying and thinking of you all ALWAYS!
    The Vanderbooms

  17. Carla and MatildeJuly 8, 2010 at 3:14 PM

    You have such a beautiful family! I deeply admire your strength but mostly I admire the way you face life with a smile on the face. I have completely indentified myself with your experience on documenting the evolution of Bella's wounds: seeing just a leg or just an arm and, only at the end when it's over, you see your daughter. That technique saved me from insanity, in the first hard months of my daughter's life.

    ‘Keeping Bella in my most truthful prayers. God will not let her down.

    With a hug full of strength,
    Carla and Matilde (13 months with EB), from Portugal

  18. We are praying for Bella and your family!
    Our hearts are with you guys...
    Craig & Natalie Astor
    (Grant and Lacy's Sister & Bro:)

  19. Geesh, I can't believe some of these nurses! I am not sure how you didn't shake her when she put that e-mail in front of you.
    Many prayers for continued healing and new cell growth for dear, sweet Bella.