Friday, July 9, 2010

July 9th: Day +7

They are all on board, folks!

Well, most of them... the staff, that is. Word has gotten around FAST, and today, I spent most of the day doing a wound-care in-service for the RT and 2 nurses we had today. I heard, "We know that YOU are the primary caregiver and expert when it comes to EB..." AT LEAST twice from two different people in our room today. I did have one RT come in and pull the know-it-all thing today, and I had to I straighten her out twice. It's funny; you can just TELL who is open and who is shut almost as soon as they start talking.

Anyway, it was a wound care day, and with the 50-odd people who want to come in and talk, it took me 5 hours to change Bella's head gear, bathe her, take photos of all her wounds, change her dressings, and change her bedding. The nice thing is that Bella was really stable the whole time, so I didn't mind taking all that time. After all, where else were either Bella or I going? The one thing we have a lot of around here is time!

Music to my eyes! On the desk in our room for EVERY nurse to read!

Dr. Tolar dropped by today. He continues to be very happy with Bella's progress. We had a good conversation about the process of this BMT, and what makes it so unique. Dr. Wagner and I had this same conversation, and I tell it to almost every staff member so they realize just what is happening within their hospital.

To summarize, a typical BMT heals a disease within the blood, so the new stem cells stay within the blood stream. In this trial, we are seeing those same stem cells leave the blood stream and transform into skin cells. This is the first time we've seen the application of the BMT procedure for a non-blood disease. It is as if the wounds where the cells go to send out a signal, like a beacon, and the cells "hear" this signal or beacon, and "go to the light."

When I recapped the process in this manner to Dr. Tolar to see if I indeed had this unique distinction down, his eyes brightened and he said, "A BEACON! That is great imagery! I am going to use that in my lectures!"

Like I said before, I LOVE talking with these guys. Dr. Gupta, head of ICU, is similarly as bright a mind, and we have great conversations just about every day at the foot of Bella's bed. It is thoroughly stimulating engaging these bright minds and mining them for nuggets of knowledge. Not a day goes by that I don't learn more about the brilliant and delicate balance that makes the human body function. With each passing day, I have more trust in our docs, and more faith in this trial. I just feel like this is exactly where we are all supposed to be. I don't feel like I'm missing out on anything back in CA, I feel like we are at the heart of what life has made available for us. Like a grand adventure, each day truly begins in a bit of mystery; what will they say in rounds? What nurse will we have? How will Bella be today? What new decisions will be made about her care?

Life is not to be survived or endured. It is to be LIVED! Sometimes, this can be scary, this riding on the edge of the unknown. It can also be a whole lot more tiring than the predictable. That's okay. I'd rather die from too much excitement instead of too much boredom any and every day of the week.

Last night, I slept again on the chair in Bella's room. I went to 'sleep' at 9:30 pm, and the night before at 3:00 am. Last night, I got no more rest than I did the night before. The alarms on the many pumps in the room go off incessantly, and the sound of the hourly suctioning is so unbelievably loud, that both sounds cut right through my earplugs and my slumber. I was useless this morning. At 11:00 am, as I was still in a coma, the child-family life dept. dropped by to say they were having a field trip to noodles and co. for a free lunch. That sounded like just the thing to get be into gear! I hopped up and shuffled along, hoping I wouldn't have to socialize too too much. The child life staff is so happy and upbeat all the time, which is a great quality for their job, but when I am a grumpy bear, it can be a little much to take. I was on good behavior, however. I let other parents talk about their kids the whole time, and listened for a change! LOL.

I have to say despite being a little grumpy, I was again so grateful for the unending generosity showered upon us parents. We are well taken care of between Ronald McDonald House, Care Partners, and Child-Family life. Lots and lots of little cups of water along this marathon. I am learning a great lesson about life in all this. I used to wait for the big payoff, the grand event, the giant breakthrough that would change everything for me. Now, I realize that I was running a marathon, if someone stepped out to give me water, and it was a 5 gallon jug (a big payoff), it would actually slow me down, not keep me going. And so it is with progress and charity. It happens cup by cup, not jug by jug. Bella won't grow all her cells in one day. However, after a year of modest daily growth, she's going to be a walking, talking MIRACLE.

I'm so happy to be right here right now. This is our life, and we are living the heck out of it!

Bella's socks of the day!...

P.S. Tonight, I sleep at home with the rest of the family; mommy, Ali, and grandma. After 2 nights in Bella's room, there is nothing for me to do, and nothing I need to supervise. Sam (Dr. Gupta... he goes by Sam) was telling me today, "Yeah, we had a kid in here last month for 3 weeks and the parent never left once. I kept telling him, 'Right now, you need to rest up, because when we discharge you're kid, it's gonna be YOU who is up all night caring for him, not us. Take advantage of the fact that you have a whole team of people working for you so you can be totally rested when your shift begins.'" I got it. Rest up while I can. Okay, I will. After all, if I get a cold from being worn down, I'm kicked out of Bella's LIFE until I am completely healed, and we can't afford that at all.

Good night, and God bless you all. You are our cups of water. Thank you.


  1. This may be my favorite post yet...for obvious happy and positive.
    I am happy to be able to fill the cup every so often...It's been a blessing to be here on the journey with you guys....

  2. It is no wonder why you were chosen to be Bella's Dad.

  3. Jack and Molly's NanaJuly 9, 2010 at 10:18 PM

    I get the impression that the doctors enjoy talking with (notice I didn't say "TO") you, too. Despite all that they've seen, every case is different and every parent has differece experiences, so THEY'RE learning from you as well. And lucky for them, you're able to express things so well, which all of us appreciate in your blogisodes (yes, I DID just make up that term).
    Here's to a wonderful weekend, some well-deserved rest, some Daddy time with Ali and maybe a walk in the park. Drink up!

  4. So wonderful to hear such progress and communication!! You are such an amazing parent/advocate/change agent, just amazing :) We have a program at CHOC where parents are invited to be patient advocate for the hospital... I think you would be such a wonderful influence for the parents, nurses, docs, everyone!! You're clearly doing a great job in Minnesota!! Yours and Daylons family are in my thoughts and prayers constantly :)

  5. You inspire the heck out of me. I am so glad that you are a member of this small EB community. I know that with your help, and of course Bella, this disease will be gone in a few years. Thank God for you pioneers in this experiment.
    I love the book EB guidelines. Wouldn't it be wonderful if every hospital had a copy of that book and every doctor and nurse read it.
    Thank you so much for the updates. I feel as if I were there with you guys.
    Rest up and have a wonderful weekend. God Is Good All The Time. Love Leah's Nana

  6. Your words inspire me Tim....God bless you and keep you well...prayers for Bella... beautiful baby girl, be well. Blessings for all your family, and for the amazing people who are pioneering this trial.

  7. You rock, Bella's dad! What a beautiful and inspiring post today. And thank you for helping all of us remember what life - and living - are really all about. You, sir, provided me with a cup of water today. I love all your writing, but I especially look forward to a view of what have to be the most stylish little feet around! Blessings to all for a good weekend.

    A friend in NC

  8. I love your analogy of life being a marathon with small blessings along the way. So so true and a sentiment that I think we can all learn from and take care to recognize. I've got a lake, country air, and sunshine reserved for you and your family so let me know when you'd like to drink that cup ;)

    Love love love!!!

  9. I too love the marathon analogy... might be using that soon. Glad to hear things continue to improve, all your hard work is paying off. Hope you enjoy some good rest!

  10. Can I just say that we are living the same life? I shouldn't be surprised to read that there are so many similar occurances in the day since they involve all the same people, but I am. I love those folders! There great! The attitudes around here are improving so much! I'm glad your going to sleep at the RMH...I was feeling pretty guilty when I'd walk by Bella room at the end of the day and see you sleeping on the chair! What a trooper you are!

  11. God is good!!! I've been following your story ever since Angelique and I reconnected on facebook. In a very small scale, I can relate to your plight to care for your daughter. My son had 3rd degree burns and was hospitalized over a year ago. After 2 surgeries and several bouts of infections, he is doing well. During our hospital stay, we dealt with some great nurses and staff and some not so great. After 2 days in the hospital, everyone (including the cleaning lady) knew not to enter our son's room without one of us present. It's so sad we had to do that, especially in the burn unit of a world-reknown burn center but no one knew our son better than we did. Even Dr. Grossman (Yes, THE Dr. Grossman of the Grossman Burn Center) said he wished all parents and adult patients were as vigilant about care as we were.

    I'm so happy to hear the staff is now on your side. I'm also pleased to hear that things are going well for Bella. We are praying for the Ali's cells to propagate and dominate and find the BEACON. We pray for God to continue guiding the doctors and give clarity to the mysterious EB. We pray that you and Angelique continue to grow stronger in Christ and offer testimony of God's amazing powers to those around you who may not have a Christ-centered relationship with their spouse. Also, safe travels for those visiting you...of course, for Ali to continue being the extraordinary girl that she is. God bless all of you!

    Love -
    Kim and Steve Okamura
    Orange, CA

    Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand. Isaiah 41:10

  12. So even if I don't comment everyday, I read this faithfully everyday!!!! And pray for Bella faithfully everynight! What an amazing thing for me to be a part of! Thank you so much for sharing with us all and letting us be a part of your lives! ~The Judd Family in Sutherlin, Oregon! :)

  13. Thanks for your "cups of water along the way" analogy. You are so right. I just never thought of it that way before.