Thursday, July 8, 2010

July 8th: Day +6

Our prayers were answered!

Today was like I died and went to nurse and RT heaven! LOL.

But first, let me tell you about crossing off one of life's to-do list items. Today, I got to walk my little girl Ali to school, down the sidewalk, though our neighborhood, hand in hand. The whole time, she told me all about school. It was just the greatest feeling in the world. Tonight, I took her on the swing here outside the hospital in its pretty plaza, and we played on the swing, chased bunny rabbits, birdies, and a big squirrel through the grass. Life IS good.

Also, grandma returned to help out till my mom arrives next week. It is SO nice to have her back. Life IS good, indeed.

On the Bella front, not too much to report. It was a relatively quiet day for her. She'll get another chest x-ray tonight so we can look at the atelectasis and see where it's at today. The docs were ZERO percent worried about it in rounds. Sam, the head ICU doc, said quite casually that it happens when you put little kids on ventilators. They practically expect it. So, if they're not worried, I'm not worried.

I walked into rounds from walking Ali to school, and my nurse takes one look at my Germany T-shirt and says, "Ohh, my daughter and I were SO MAD when Spain scored yesterday! We just LOVE Germany and are SO UPSET!"

Okay, where's the hidden camera? This angel of a woman was probably in her late 50's and an absolute HOOT ALL DAY. I get her for the next 3 days in a row, too! Lori, I love you!

I had an AMAZING conversation with the nurse manager over here in the PICU today. She couldn't have been more accommodating. She had heard that I specifically requested not to have the same day nurse ever again, and wanted to give me a chance to give any feedback and tell her directly what happened so they could address it. The conversation progressed into what the experience has been like for Jennifer and me in the PICU and the various levels of care that have been encountered. The conversation ended up with us discussing shooting a video of me explaining the parent perspective and delineating between "being" and "doing" in patient care. Two nurses or RTs can come into the room and "do" the exact same treatment, but how they are being - grumpy, annoyed versus compassionate, nurturing - completely transforms how the patient and family relate to what the staff member is doing. Around here, you have to have what you are doing handled so you can also be conscious of how you are going to do it. On one other unit, the nursing manager got such a powerful story from one grandma about the family's experience, that the video'd her and they use the tape to train all their subsequent new hires. Well, once Bella is discharged from the hospital and we have lots of down time at RMH, the nursing manager wants to make a video of me that they can use to train all the new nurses as well as show existing nurses during trainings and in-services.

Anyhow, it was a wonderful time to vent, and get off my chest everything I've been sharing on here. Then, later on in the p.m., a new RT came in the room and was as polite as all the nurses and said, "you just tell us exactly how to do anything for you because with EB, YOU ARE THE EXPERT!" I couldn't believe my ears!

Welcome to CASINO BELLA! Lights! Action! Excitement!

My view from my "chair"... is there a baby in there?

Can you find the thumb in this picture?


Make sure to drop by the Edling's blog and wish him a happy birthday, because it is TRULY a blessing that a little boy with Junctional Herlitz EB gets to see his first birthday, even if he's in the PICU!

Okay, I am BEYOND exhausted today so I am going to chair EARLY. (I can't really say bed since I'm sleeping in one of those pull out chairs... this one's not too bad; I've had worse in SD and OC!)

Love and Gratitude,



  1. This is my first time commenting, and to be honest Im not entirely sure where I heard Bella's amazing story, but I have to tell you that those first words from you today ("prayers have been answered!" ) really got the tears flowing! My husband (who is NOT a blogger, and generally doesnt "understand" blogs on a regular basis) has asked me "how is that little" for the last two days, and your little girls have really captured our heearts. We will continue to be in prayer that your "prayers have been answered" will SOON be in response to an improvement in Bella's condition. A cure feels so close! We keep you in our thoughts and will await the day you declare Ali's blood cells a complete success and cure for Bella :)
    Sweet dreams to all of you, and especially to your amazing wife who must truly struggle with being at work all day while you are by Bella's side. Without knowing anyting about her work atmosphere, I will pray that her coworkers and boss are understanding when her mind may wander to her daughters, and that they are accomodating so you can get some relief at the hospital.
    Keep fighting, Bella!

  2. We are happy things are looking better with the nursing staff!


    The McGoverns

  3. That visual, of walking Ali to school?
    Melted my heart. Just think of next year or so, when you have a little girl for each hand :)
    That, is a vision!
    So, glad all is well, and that you have grandma to back you up! Hooray!
    LOVE Ali's shirt, by the way! It's fantastic!

  4. Loving the updates... I can't believe Ali is starting school!!! It seems like just yesterday I was babysitting and calling you to see if she knew how to color yet!!!

    Glad you have so many positive things to write about on here. Sending lots of prayers and positive thoughts your way!


  5. Glad to hear you had a positive meeting with the nurse manager, hope things improve from now on. Doing a video sounds like a good idea.
    And what a shame on them you have to sleep in a chair when you need a good night's sleep more than ever. I guess there's no space in the room for a bed :-( But I'm sure you can overcome this inconvenience, you and your wife are both so strong and amazing.

  6. WHAT? YOU WERE SUPPORTING GERMANY? i can't believe don't say you will be supporting the Nederlands too???? ;-)

    Glad to hear you feel more comfortable with the nurses - i can imagine how bad it is to feel that you know better but are not allowed a say in the matter.
    (my daughter was first in a local hospital to have an ex-fix device to lengthen her leg after a car accident 7 years ago - and most people outside traumatology had no idea what was going on . I could easily relate to your anger and frustration)

    Viva EspaƱa, the new world champion! (well, as from sunday, that is...)

  7. I've been reading only a short time but I wanted to comment and tell you that each day I look for the update and I'm so glad that you had a good talk with the nurse manager and perhaps will have better experiences from here on out with the staff there.

    I'm sorry you got demoted to a chair-bed. Those things are terrible. I found (while in Children's with my 3 month old last year) that I was so exhausted at day's end that I didn't eve CARE how uncomfortable the chair was for sleeping. That isn't how it should be though... I'm sorry about that!

    Thinking of you!

  8. I am so glad the nursing staff is finally getting their act together! I've spent enough of my own time in hospitals (yay Crohn's Disease!) to know that the nurse you get can change your whole experience. I'm stoked for you getting to do a vid for the nursing staff! I think that will really help educate them on exactly what the EB patients in particular are going through and will help them with any other EB babies that end up in PICU.

    Also, yay for Ali time! Your girls are both so adorable. As for the WC I'm rooting for both, since neither team has ever won before! (Brazil got lazy and are out, so now I'm impartial! :P)

  9. We are just catching up here -- a LOT has happened. Once again, you've given us the gift of reminding us that it's a miracle to walk your kids to school or play with them on a swing. You are constantly in our prayers. Go, Bella, go!

  10. Thank you Tim for taking the time to update us about Bella. I check every night and morning for updates. I'm so glad Grandma has come out to help. Tim and Angie you are amazing parents. Ali, hope you continue to have fun at school.

  11. I'm glad to hear things were easy for Bella yesterday. Hopefully, your day will repeat itself today! You gotta love when the grandparents come to town!! Life gets sooo much easier! Happy school days for Ali!

  12. Jack and Molly's NanaJuly 9, 2010 at 3:50 PM

    At last! A bit of relief for you ALL. I'm so glad that you were able to walk Ali to school and have some special time with her. I can't imagine how much she loved it!
    And Miss Bella resting comfortably is such a blessing.
    I'm SO happy that your concerns finally met some caring ears, and that you can be so instrumental in teaching all that you have learned to the unprepared staff people (probably parents, too). That old adage about the squeaky wheel really DOES pay off, especially when it's done in a way that says, "work WITH me here". Congratulations on that.
    I'm sure you'll ALL enjoy having Grandma on hand; and I'm sure SHE's glad to be there so she can see exactly what's going on. A picture really IS worth a thousand words.
    Get some rest; you definitely deserve it!

  13. All of your updates are so great! Today I literally spent my entire work day reading your blog from May 09 to today and I have got to say that I LOVE how positive you have stayed! Even in the toughest of times you have put it all in the hands of God. One thing I will say is that it is ALWAYS God's will for everyone to be healthy.. WE have to allow it. Not saying your not allowing it in any way shape or form but I just wanted to throw that out there! :) Bella is a BEAUTIFUL little girl and I believe your vision! One day she WILL tell people that she was born with a rare skin disease and when her mommy and daddy (and Ali) brought her home from the hospital it was all gone. (Not your exact words but you know what I mean! I am buying Bella's book first thing tomorrow morning! :) You and your wife have poured all your energy into eduacating yourselves (and others) about EB and I believe that your family is going to have an AMAZING testomony after this is all done. One that will reach people all over the world (like you are already) keep up all your hard work...but also try and rest while Bella is resting as well! :) She is adorable! Praying for you and your Family for your MIRACLE that is taking place! :)

    Alina Hernandez
    Corona, CA