Saturday, September 4, 2010

September 4: Day +64

Yes, that IS Ali's rainbow unicorn in my face and mommy's bag on my head...

I'm glad my browser auto-populates the date and day above for me when I type S-E-P... otherwise I would have no idea what the date is. I have lost all track of time here.

Well, we slept in after our raucous night at the fair. Turns out, Bella took it easy as well! She didn't need fluid last night for the first time in forever. She needed fluid tonight, so it was a short-lived holiday... hey, we'll take it. She is on day 5 of treatment-dose steroids, and we have been able to continually wean her down on her vasopressors, and her ventilator settings have improved tremendously. I think it's because Bella's tracheotomy surgery is scheduled for next Thursday and she knows it!

We told her her boyfriend left to go to 5D... no response.

We told her their poking another hole into her next Thursday... Hey, we're starting to see a response!

Everyone would really love to see her rebound and not need yet another procedure much less another hole in her, but if she doesn't bounce back by then, it's what we gotta do to get her off all this sedation, which at this point very well may be the cause of most of her problems. It's a reversible procedure, so it is a temporary solution, not permanent, but that also means she'll need another procedure to take it out! So, it's really TWO more trips to the O.R., but the breathing tube at this point is really causing Bella harm; she's got scarring in her trachea, and gum and tooth damage in her mouth.

So, she's got till Thursday to turn the corner. We can always cancel the procedure between now and then, but if nothing's changed by then... remember, living with EB means constantly choosing between two crummy options. I really hope we don't need the trach, but I know that it will allow Bella to get better much quicker, so it's for the best.

After we changed her head gear and leg dressings today, we headed out shopping for fall clothes. Yesterday was already colder than the coldest day where we're from, and we're not getting outta here anytime soon, so we bit the bullet and bought some more layers. Today's purchase should get us into or through October, then we'll need winter stuff as well. I have a feeling we'll be in parkas before we know it.

Tomorrow: knights, princesses, and fairies at the Renaissance Festival. For someone who loves castles and princesses as much as life itself (me - er - uh - I mean Ali), tomorrow should be fun-filled.

Oh, and I promise Fabulous Socks of the Day tomorrow!

Good night.


  1. I probably shouldn't tell you it was high 90s here....I am longing for fall!
    Glad to hear there Is a game plan. Leave it Bella to make you change them! I'm excited to hear how the next week goes...much love from home.

  2. I'm glad to hear some good news. Hopefully Bella will be able to give us more good news tomorrow too. Lots of prayers going out to Bella that everything goes smoothly.

    Take Care,
    Amber McLaughlin,CA

  3. My husband has a booth (#339 - Under the Mango Tree) at the Rennaisance Faire... he designs and sells leather journals. (The gentleman managing the booth, Daniel, will be able to help you!) Please stop by and pick something out for your family... (We live in the same neighborhood as Daylon's family and have grown to love and pray for Bella through your blog.) Sending love and prayers to your family from California!
    Marcy & Mark Brasher :)

  4. A fair weekend, that is very cool. Enjoy the costumes (ha! I'm sure you will) and maybe a turkey leg (that's what you eat there, right?)
    Sending Bella instructions to keep up the good work with her breathing and sending lots of love too. I feel really good about Dr. Wagner being back, I think Bella wants to perform / impress him this week. Go Bella go! Love, Jen

  5. I hope you all have fun at the Ren Fair! Living in SoCal, I can't imagine trying to prepare for a Minnesota winter. Brr! I hope that Bella is able to avoid needing a trach, although you have such a great attitude about it. They can be removed when not needed anymore, and if it's what your beautiful girl needs to improve, then it's for the best. Your positiveness (is that even a word?) is incredible!

  6. I hope things turn around for Bella soon.

    I wouldn´t worry to much about the adjust very quickly. Last Christmas my family and I went to visit my parents and we had one week of being frozen and then I think your body just accepts the environment.

    Prayers for Bella

    Jeni, Spain(although I will always be Minnesotan)

  7. Hope you all had fun at the Rennaisance Fair!

    Bella's book came friday and I finished it last night! You are a stong and wonderful family!

    Prayers will continue nonstop for all of you!