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.