Monday, July 5, 2010

July 5th: Day +3

P.S. If you click on any image, it will open up and you can then enlarge it!

Life in the PICU
Slowly make you lose your mind
Life in the PICU
(cool guitar riff)

That was sung to "Life in the Fast Lane" by The Eagles

Well, it's been a l-o-n-g day. Yet, W-A-Y less crazy than yesterday. We started working on Bella today at about 3:00 pm, and finished around around 9:30.

And we're not done.

We had to stop for the night.

I'll elaborate. Yesterday, Bella kind of "ended up" in the PICU with a tube stuck in her throat, and a whole host of awful wounds. Her right armpit looks as bad as when they pulled her out of her mommy's belly a year ago and peeled the skin right out of her armpits, hip flexors, and butt cheek. Ang had told me her armpit was "tore up", but I hadn't seen it before she dressed it. Well, today, I had to dress it. I could barely handle it. I have done, alone and with Ang, close to 200 dressing changes on Bella, and her armpit today broke my heart as bad as any wound has ever. I was just SO SAD looking at all the wounds she suffered in the last 48 hours. We worked so hard keeping her wound free, and in one 12 hour period, more damage was done to her poor little body than in months combined. Ugh. Poor little girl.

Photo by Ali of mommy with Ali's butterfly balloon...

Anyway, today was about doing bandages and really attending to the new wounds and head gear in a more detailed and meticulous setting than yesterday when they were just covering as quick as they could during the melee. I had Respiratory Therapy (RT) come and change out the dressings they placed yesterday since they were completely saturated and not as "clean" as they need to be. I worked with the most wonderful RT today named Haweya. Brett Kopelan, Rafi's dad, (; patient #8 in this trial), had told me some really great things about her just last night, so when she rolled in today, I was PSYCHED to get to work with her. Unfortunately, there are a couple of RTs who think they know EB, but injured Daylon yesterday during a suction session, so it's a little hit or miss with who "gets EB" and who doesn't. RT doesn't see all the EB kids, so they don't have the continual exposure to the kids and the parents like the nurses on the BMT unit do. So, I'm on guard.

For example, Haweya couldn't have been more accommodating today, but one of her colleagues, who shall remain nameless, was annoyed that I had them change out the DISGUSTING dressing, saying (all annoyed), "Well, normally, we only change these out once a week." This same person walked into the room and walked past me without making eye contact, introducing herself, or explaining why she was about to touch my child.

Medical staff that are reading this: don't ever do that.

Anyway, today's list of things included changing all her dressings, head gear, changing her sheets, and putting her into a new crib that has a *working* scale built into it. The crib she's in has a scale, but it's broken. Well, we never got that far. It was 9:30 by the time Bella was really "dialed in" to her bed, and if we moved her and the line came out, there wouldn't be anyone in the O.R. who could replace it. So, we put off the transfer until tomorrow during the day when the hospital is fully staffed.

Thanks to another good phone consultation with Brett tonight, I put 9 gel packs under her body to ease all her pressure points; two under each arm, two under each leg, one under each shoulder, and one behind her neck. This last one was the MAGIC placement because it helped open her airway, and paced her head in a more neutral position. This has helped her breathing tremendously and she is much more stable on her vitals.

I thought the pole in her other room had a lot of machines...

Our nurses today have been exclusively from the PICU with very little to no experience caring for an EB baby, but have been very open and receptive to training and education on EB. I am a little hesitant to leave her tonight, but I am only a few doors down the hall and around the corner, and the nurse knows that NO ONE is to touch her or mover her for any reason without me present. (P.S., the aforementioned RT has since come back in the room and introduced herself and why she was coming in... good job! Still not the warmest person on the unit but moving up the list at least.)

Okay, well, tomorrow morning is the bed transfer. That will be a challenge, but we'll get it done early and then hopefully smooth sailing.

Ooh ooh ooh! I almost forgot! Tomorrow is Ali's first day of pre-school! I am so excited for her. She needs that constant stimulation that preschool will provide. I am sad I can't take her; I remember taking her to her first day of day care. She even asked me tonight if I was going to take her. Ugh, that was a drag. It reminded me of when I had Ang recovering in one hospital, Bella in the NICU at another hospital, and Ali with grandma and grandpa. I just couldn't be in all the places I wanted to be at the same time. Who me, control freak? :)

"The Duplicator!"

Bella is listening to the playlist of mommy reading bedtime stories to Ali with me playing guitar in the background mixed in with my record, Full Circle, that is just acoustic guitar and vocals. It'll run for the next 2 hours after I leave so Bella has us in the room for a while even while we sleep. I love modern technology. Hey, I CAN be in two places at once! LOL.

See you tomorrow.

Gotta stay fabulous, even in the PICU!


  1. Thinking and praying for your baby constantly! May she heal quickly. God bless!

  2. Jack and Molly's NanaJuly 5, 2010 at 11:54 PM

    I LOVE how peaceful she looks, despite all the bells and whistles. And I appreciate that you're both being so pro-active in her care. The gel pack idea is brilliant; so glad she's breathing more easily; no doubt YOU are, too. Here's hoping for a smooth transfer in the morning!

  3. I know you do not know me (Patrice sent me) but I just wanted to ask....I saw that you placed gel packs on pressure points....wondering if you placed any at the base of her spine in the buttocks area? That's another area to watch out for skin breakdown. I am praying for your Bella (what a pretty name) and I am reaching out to hold her hand. God speed lil one

  4. Hi Tim:
    She really does look so peaceful, doesn't she. Thank God she is getting the rest she needs and is pain free.
    I'm so glad that Brett told you about the gel pads, and especially the one under her neck. Leah always had a blanket or something behind her neck because of her trach. It really does help with their breathing.
    Extra prayers for beautiful Bella and the whole family. Hope Ali loves her new school.
    Hang in there guys, your EB family is behind you 100%. God Is Good All The Time. Love Leah's Nana

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  6. Ok I'm almost in tears. What awesome parents you are. I am SO glad Bella is comfortable, but so sorry to hear about her new wounds... if her skin is anything like Tripp's- it takes ages (or never) heals. Your entire family is in my thoughts and prayers constantly. Thank you for updating so often. Spending many many days in PICU, I know how exhausted you all must be- physically and emotionally! And Ali's first day of preschool? Wow. I will say an EXTRA prayer that she has a great day! I know I am so far away, but PLEASE if I can do anything for any one of you, please let me know.
    All of my love, Courtney (Tripp's mom)

    Oh, P.S.- Those nurses/RT's/doctors/anyone who walks in that room... should have experienced the EB "Tiger Mom/Dad" before- you'd think they would know by now! :)

  7. I love your attitude! I would so be the same way! YOU ROCK! Hang in there- we're still praying for your family!

  8. Jack and Molly's NanaJuly 6, 2010 at 7:52 AM

    Oops! I forgot to wish Ali a wonderful first day of preschool. Hope she enjoys meeting some new friends and has TONS of fun! Anxious to hear how HER day goes, too.

  9. i dont know what made me smile more...the fabulous "shoes" or Ali starting pre-K :)

    Thanks for the awesome updates...prayers are coming :)

  10. Bella looks so peaceful, I am so glad to hear she is pain free, I am sure it makes this difficult situation more comforting. I am praying with every ounce in my mind, body and soul for her new cells to grow. You're a family of FIGHTERS and remain dedicated to winning this battle. FIGHT ON baby girl! Your prayer warriors are with you, besides you fighting this battle, holding your hands sweet Bella. I cannot thank you enough for keeping us all posted. I know that is probably the last thing you want to do at the end of a long day. It is so much appreciated! I have been logging in by using my cell phone lately. This weekend you all were on my mind alot as I sat celebrating the 4th and had no computer in sight. I woke up around 5am(saturday and monday), to find myself sitting on my balcony, speaking to God about how greatful and thankful I am. In the quiet, calm of the morning I could feel God hands with mine, with Bella's, bringing us together under the same sky, hundreds of miles apart. I know that He will heal her wounds and is giving her time to do that now. Her body is resting and I hope you all can do the same. What an awesome testimony this is going to be-for you, Ang, Ali and Bella. I can't wait to witness it! Peace and Love from the OC.

  11. Those shoes are AWESOME! :) She does look peaceful. I'm sorry she has to be in the PICU but at least you're near Brian, Jenn and Daylon! My husband and I have started including your family in our prayers for Daylon. The strength And faith you and Ang show is so inspiring! Thank you for continuing to share your story with us. --Dalyon's aunt Jess

  12. So what is up with Ang? Why is she in a different hospital? We have been praying for you

  13. Thanks Tim for the continued updates during this busy time. From one control freak to another...good job! Control what you can, who touches Bella, as you do, it matters the most. What you can't control, use your faith, as you are doing. I am so proud of you and Ang, you are handling your situation amazingly. Even more of a team than before. I'm so lucky to have seen it in action. Bella will have new, Ali cells anyday now. Grow Bella grow! Jen