Tuesday, September 14, 2010

September 14: Day +74


Quick blurb before bed.

Bella is beat, and so are the three of us.

Trach is scheduled for Thursday at 7:30 am. I'll be in at 6:30. I officially surrendered to the trach this morning, and promptly had to bone up on all things related to the trach. I went through Kubler-Ross' stages of grief regarding the trach, and I'm now at acceptance.

Met with the ENT resident today. Will meet with Dr. Rimmel (sp?) tomorrow morning. He is the head ENT hancho and surgeon for Thursday. He comes really highly recommended, so we feel like Bella is in the best hands in Minnesota.

Talked with two EB parents whose kids have trachs today. Thanks John and Courtney for all your support. After brainstorming with the two of them and the ENT resident and various nurses, I feel better about how this is all going to work. The ICU docs don't really know how this is going to work, but they hope this will eventually be the key to Bella turning a corner.

Here's the process they hope for:

1) Bella gets a trach (more secure, no more damage from oral breathing tube)
2) After it heals, they slowly wean her off her sedation and "wake her up"
3) Hopefully this increased cognitive functioning will trigger better blood pressure regulation
4) With better blood pressure, we can pull excess fluid off with Prisma
5) Once back to our original weight, we can get off the vent
6) After a period of time off the vent, they take out the trach

Simple, really...


Anyhow, we're making it up a little as we go since we're pretty sure we're the first EB/BMT kid to ever get a trach. Great. 1st again. Not one of those categories you wanna be first in, but oh well. Bella is here to teach. Apparently she's got a few more lessons up her sleeve.

School's in around here in more ways than one. Go, Professor Bella!

God night.

I cut and filed Bella's two fingernails yesterday...


  1. from Dawn and friends in Canberra Australia,still storming the Heavens on Bella's behalf.Through all this you and other families coping with EB are the ZING to our Faith.Thinking of you all with love and prayers

  2. Hope all goes well tomorrow and you get the results you expect.
    Martina, UK

  3. Praying for strength and healing, sending hope and peace. Hang in there, corner's just up ahead...may it open on bright skies...blessings to you all, especially Miss Bella, beautiful baby girl, who will be well!

  4. So, my last 3 comments haven't posted. Weird.
    Hope all is well....love all the new pictures.
    I loves your cliff note version of the game plan.....helps me really "get it". Bella is quite the teacher...amazing baby girl!
    Go Team Bella!

  5. Wow...you really are Super Dad! You manage and follow all the details of Bella's medical care AND give manicures! Sweet! My prayer for today will be for a successful and "uneventful" trach surgery as well as for peace in your hearts as you head into it. If this is what Bella needs to turn that corner, then "get 'er done"!

    Praying for healing,

    A friend in NC

  6. Oh, I hope things are going well this morning.

  7. I think the game plan sounds good! Someone has to be "first", although I'm sure it's not much comfort. Just think how much Bella is teaching them, that will help future EB/BMT kids!

  8. I repeat all the above comments. They say what is in my heart but have a hard time expressing so eloquently. I'm with you daily in prayer, praise and hope. Something world shattering is going on in Minnesota. Greenie (Ladybugjudy@hotmail.com)

  9. Hi Tim: I will be saying extra special prayers tomorrow morning for beautiful Bella. Hang in there. Hoping all goes well and Bella will be one step closer to getting out of the hospital and going to the RMH and being with the rest of the family.
    Take care and rest well tonight. Love you guys. Love Leah's Nana

  10. Praying for little Bella, her family, doctors and nurses who will do the trach. God will guide them.
    Lots of love,

  11. Tim..
    sending prayers and love your family's way this evening. Please call if we can be of any help at all..Your plan sounds great for Bella and we will continue to pray she will quickly move forward..If you need tips on any adaptive measures as they come up call anytime...our children are treading new ground! blessings to all of you.
    john, Beth and Casey

  12. Praying everything goes well and that God's hand guides the surgeon through Bella's trach procedure!
    Lots of love and healing intentions flooding your way from home :)
    The Vanderbooms

  13. Praying for the strength you all need to get through this next step.
    Tina & Family in NJ