Thursday, September 2, 2010

September 2: Day +62

Well, we'll be home for Christmas... hopefully.

We had the talk with Dr. Tolar about how things have been going and how long it will be before we could hope to get out of here. He wouldn't pretend to know how long; we all agree that Bella is in charge, and will therefor tell us when we can go home. We kind of figured after Daylon's mom got the same talking-to a few weeks ago, we were in for it at some point, so might as well just get it out of the way!

We also saw Dr. Wagner today. In fact, I saw both Dr. Tolar AND Dr. Wagner in the same hallway at the same time today. It was rather funny, actually. I was talking with Daylon's mom in the hallway outside our room when they came walking down the hallway, one after the other. It turned out that they were having a team pow-wow since Dr. Wagner is coming on rotation next week and has been on vacation and out of the loop for a few weeks.

Newest addition... nitric/ous oxide tank...
Anyhow, After the pow-wow, Dr. Wagner came in to discuss Bella. He had a couple of fresh ideas to add to the mix, although one of them isn't new, it's just that we haven't tried it yet. So, that one got implemented immediately. We are getting rid of the immunosuppressant cyclosporine (CSA), and replacing it with Mycophenolate Mefetil (MMF). We were on MMF early on in transplant (for the first 30 days). The reasoning is that CSA has been known to cause the heart outflow obstruction issue Bella is having. Today, after weaning the norepi way down, an echo was done that showed virtually no change in either the mitral regurgitation or outflow obstruction gradient (in english, that means the norepi ain't to blame for Bella's heart issues). Out goes CSA. It will be weaned out over about 5 days. Dr. Wagner feels that at this point in transplant, with how young Bella and Ali are, the fact that we had an 8 out of 8 HLA match, and the massive amounts of steroids (also immunosuppressants) Bella's on... we are at a low enough risk for Graft Versus Host Disease (GVHD) to make a move like this. It's not a great option, but nothing else has made a difference yet, so here we go.

The other tests he wants to run are a head MRI and a lumbar puncture. Again, he doesn't want to miss anything we know how to treat. Never mind that we just had a head CT last week. So, tomorrow morning, it's off to MRI again. We just have to rule out everything we possibly can... that is the western way.

Bella's blood pressure did fine for most of the day. We weaned pretty far down with the norepi and finally had to go back up on both the phenyl and the norepi a little as we moved into the evening. Bet you 5 bucks the fellow can't get to midnight without infusing her with fluid. You could just feel him practically shaking he wanted to order it so bad when her pressures got a little soft while we were there after dinner. He knew better than to try while I was there lest I go postal on him. They just wait till I leave.

In other news, Dr. Tolar took us to his research lab today to show me the EB mice he has. It was pretty awesome. We also got to see Bella's slides on the computer. So far, no collagen VII growing in Bella's skin. That's okay; it's a long term growth curve, not a short one!

In still other news, tomorrow, the three of us are cutting out early and heading to the Great Minnesota State Fair! We can't wait. Ali can't even pretend to fall asleep tonight she is so excited. I'm sure I'll have a photo essay of great sights for you tomorrow night!

Lastly, I want to thank those of you that shared what Bella has taught you. Those comments were so extraordinary; we are so honored to be her stewards through all this so she could provide you with the learning you are receiving from her. We are so humbled to be playing in her sandbox of life! We brought in a guestbook from home and the staff started writing in it. Everyone is really excited about it! We can't wait till Bella is older, and she can read what her life has provided to so many around the world in such a small period of time. We are truly blessed to be her parents. We are the lucky ones, not the unlucky ones, folks. We are the lucky ones. Thanks for walking this road with us. It is a privilege to share the path with you.

Good night.


  1. The fact that you share Bella's story with us makes all of us lucky too.
    Denise WI

  2. Adding....Lucky to be "part" of something so amazing and to get to know such a special little girl.


  3. For weeks now I have wanted to send you some sort of message, I have stopped myself several times thinking to myself "how would I feel if a complete stranger was reading a blog about my family?" but that's what blogs are for right? Well, I hope so :) Your families story is so insperational. I heard about Bella from a friend of a friend of a friend (good ol' facebook). I have a 5 year old and a 1 year old 2 months younger than your Bella. Your stories of Ali remind me of my oldest and your stories of Bella melt my heart. I wonder how strong I would be if I was faced with the same situation, I honestly don't know if I would be as brave as your wife and you are. Your hope, courage, faith, and love are enough to inspire anyone. My family and I are praying for your daughter and pray for the time to come that your girls can play together and you can return to a "normal routine of life." God bless you, your wife, Ali and Bella.

  4. I just love the picture of the two of you. It brought tears to my eyes. I miss you all so much. When Bella is ready, you will be home again. What a celebration that will be My prayers are with you always. Tell Ali and Bella that Grandma Carolyn loves them.


  5. Bella, you teach us all to have PATIENCE. You teach us to keep taking it to the Lord in prayer.

    May God bless you with healing...God bless your loving family. God is good. May His will be for you all to be home for Christmas....with BIG smiles because you are enjoying the wonderful gift of health.

    With love from South Dakota.

  6. Where is Dr. Tolar from? It sounds like a Czech name

  7. HOw did you get Dr. Tolar to take you to his lab!? We still don't know about Daylon's laminin Beta 3 growth. I'm jealous over here. :)Oh, well. He said he might have Daylon's in a week. Love the good news! Have fun at the fair! We were going to go Thursday, but decided on Saturday b/c of the rain.

  8. Ahhhhh...If the fair is here, can fall be far behind? Rides, games, food, and fun - sounds like a perfect antidote to the stress your family is constantly under. ENJOY! And have some funnel cake for me.

    Praying for a good weekend for all.

    A friend in NC