Wednesday, September 22, 2010

SOS!

****Update*****

Just wanted to give you a quick update that Faith is home. The bronch looked "OK" but we still have a long road ahead of us. They did another dilations to balloon it open. Part of the graft also appeared to be "dying" which means there is risk for infection. They will take another look in 1-2 weeks. For now she'll wean off the steroids which will be the ultimate test (can her airway stay open without them?)

Keep the faith!
Jen








Help! We're being held hostage by the hospital!! Ok not really, but it's true they are holding us against our will. ;) Faith is her typical active self but the staff does not feel that she is safe to go home yet. Plus, there is still a debate on whether or not heated high flow (which she is on) can be done at home.


The pulmonologist on service this week made a comment that we are walking a very thin line. He also warned that this will be the most dangerous and critical respiratory season for Faith and we will be seeing these four walls of the hospital a lot. Her airway is extremely narrow and the tiniest bit of inflammation can (or in words, "will") cause need for intubation.


We learned some new information last night that answers some questions we've had. The reason why our ENT isn't quick to re-trach is that one of the grafts is directly over where her stoma (trach opening) was. This is why Faith was never able to have the reconstruction and the trach at the same time. This is also why the decision to "tough it out" or re-trach has not been black and white.


So the plan is to do another bronch tomorrow. If everything looks "OK" (I use that word very loosely....with such a narrow airway perhaps a more appropriate term would be "livable" or "sustainable) then the soonest we can go home is on Friday. Although in rounds today it sounded like we'd be staying through the weekend.


It's very difficult for Faith to sleep in the hospital and she (and her parents) have been doing very little of it.

We'll let you know what we learn from the bronch.


Thanks for checking in,


Jen & CO.


10 comments:

Karen said...

I love the title of the post and I love the picture. I do have to say though that she does look a little like king kong girl towering over the city. Love the pony at the top of her head too.
Love,
Karen

Greenwood Family: Bill, Keile, Calvin and Baby Girl said...

Glad to see some smiles and an active girl! Sorry all of you are still stuck in the hospital. Nothing is ever easy for Faith but she always comes out on top! I hope you can get out on Friday but if not I will see everyone this weekend :)
Keile

Giannina said...

WOW Faith is absolutely amazing !!!!!!!!!!!!I'm so happy for you.

All our love from Peru
GIANNINA BANANNA :o)

Janay said...

I have a very similar picture of Milo looking out that window :0) I hope you get good news & get the high flow oxygen thing figured out. Milo's nurse had a different definition of high flow so we're no more help (she was talking about a lot of just oxygen by face mask). If you are stuck for the weekend let us know and we'll come "help" Faith with her PT again.

Dana said...

Jenn,
HOw do you manage Faith in the hospital while working? It must be hard.

Ayden said...

Been thinking about you guys a lot!! Wish we could come visit you guys... we have had 3 weeks straight of junk or fevers, which is nothing compared to being cooped up in the hospital. We will continue to send positive vibes... hopefully you are already home since I am late in reading this.

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