Eeek! You know it's bad that you haven't updated your blog when your camera is filled pictures from two major holidays, none of which have been uploaded..and another one is just rounding the corner.

Busyness aside (which is excuse that can only go so far), I think I've avoided updating because I'm really not sure what to say...Faith is "good" but not "great."

Faith has had two bronchs since her first utterances of Momma. The Bronch in October did not look so hot, last week's bronch showed improvement. While her breathing is not labored or stridorus, it is still not normal. She's been struggling with a bout of croup for about 6 weeks now which results in long nights of coughing fits.
Other than that we can't complain. Faith doesn't have a hole in her neck, which I suppose is the goal.


We have been advised to keep Faith out of school for the time being. Something I am having a very difficult time coming to terms with. If you could see her face as it lights every time she runs to thw window as she hears the breaks of the garbage truck thinking it's the bus stopping to take her to school it would make you sad. If you could see how over the past month she is not as affected by the noise of the garbage truck's breaks, it would make your heart melt.

Faith's airway is still considered unstable and exposing it to the petri dish that is her school would not be wise. That still does not stop us from taking Faith out and about every chance we get. She frequents libraries, museums, and Cost-co (Ok that last one's for me- is it bad that I know if I have Faith in tow I can get twice
as many samples? Hey, busy moms have to eat!) Joking aside there is not a day goes by that she doesn't sign "friends" which is just heartbreaking.

Faith spends her days with her wonderful nurse (whose been with us for over 2 years! Words cannot express the blessing she has been to to us!) My mom fills in for 1/2 days on Fridays, which of course Faith loves.

Work has been going well. Brian is teaching art at a school in downtown Denver and I am still at Greenwood (NE Denver) teaching as a math interventionist/coordinator for a teacher residency program at our school. I am working four days a week this year which allows me flexibility with Faith's constant doctor appointments and therapies.

Faith's only word is still "momma" but she uses it for everything. I don't think I'll ever get tired of hearing that. She is definitely experimenting with her voice and is making up for her lost babbling days from infancy.

And I'm finally able to report that I had my not-so-silent-mothering-moment. Three years ago a friend who's daughter was trached assured me that one day I'd be telling Faith to be quiet (she told me this while shhhing her preschooler in the grocery store.) I can now confidently say that every time we take Faith out in to public she is incredibly, ridiculously, MIRACULOUSLY Loud. And I've bitten my tongue many a times when my first impluse is to "shhh."

I cannot part without posting a pic. So here's one from Halloween. I have to admit that my years of picking Faith's Halloween costumes are officially over. And this year she chose something that we'd certainly never expect, after all this is the girl who loves dogs, alligators and dinosaurs. But she chose something that one would expect from a little girl...






Y'up. A princess. This choice not only signifies the end to my involuntary torture of Faith in subjecting her to my choice of Halloween attire, but assurance to Disney shareholders that the stock is secure as they have nabbed another consumer. It was only a matter of time and while she is still demanding dinosaur rides, it's with a tiara on head and wand in hand. And after all she's been through she can have any kind of ride she wants.


Thanks for checking back, I promise to end my blogging negligence!

Jen & CO.

How sweet the sound....

Make an on-line slideshow at www.OneTrueMedia.com

Several weeks ago I wrote a post that mentioned Faith's favorite books are from the How Do Dinosaurs series. In a serendipitous turn of events, a reader (and author, see her books here) who happens to read this blog also happens to be friends with the author of the How Do Dinosaurs series, Jane Yolen. Within a few hours I received a lovely e-mail from both authors. A week later a package arrived at our door filled with dinosaur goodies (books, a DVD, stuffed animal, etc). Last week when Faith was in the hospital, another package arrived, this time it was the just released How Do Dinosaurs Laugh Out Loud? book, signed by Ms. Yolen herself.

The teacher in me was ecstatic to have an autographed copy from such a celebrated author. The mom in me was touched that someone whom we've never met reached out and made our little girl's day.

Here's a pic of Faith "roaring" with her new dino friends.

As it turned out we were on the cutting edge of learning how dinosaurs laugh and we're on the verge of hearing Faith's. When she laughs we definitely hear more air behind it, but it's still a work in progress. For now she's enjoying ROARING with her new dino stuff, and we're loving every minute of it.

A special thank you to Margaret, Heidi, and Ms. Yolen for helping bring out our little dino's laugh.

Jen & CO.

PS: In my excitement I forgot to mention Faith's breathing, which has greatly improved since my last post. It's not perfect, but it's livable. The coming weeks will be telling as Faith is coming off of heavy doses of steroids, which have a history of masking some her her underlying issues.

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.

Just a quick update to say that Faith transferred to the floor yesterday and is in very good spirits. :) She is alert, active, and happy (during the day, nights have been another story). She has been on a high flow nasal cannula, which has been a nice alternative to the bi-pap. The only downside is high flow doesn't exist at home. Hopefully tomorrow we'll talk to the docs about making the transition home in the not too distant future.

(Think this looks bad? Pretty sure it feels ten times worse...it's kinda like breathing through a blow dryer).


Cruel and unusual punishment or an assistive breathing device? You be the judge. Right now it's pretty much just the former, as Faith has spent the last two night with this bi-pap mask strapped to her face. As for the latter, it has done little to support her breathing. She dropped (dessatted) all night long (about 50 times).

Her ENT does not think she will be able to breathe at night without positive pressure. We don't think we can live at night with positive pressure. She was flipping out so much last night I thought she was seizing.

That's all to report. Still in the PICU- still waiting/wondering what's best for Faith (and for her family too) ;)

Sleeping Beauty

Remember last go around we were mad that Faith wasn't fully sedated? Well, I take it back. Full sedation is over rated. I do not like looking at my daughter lying lifeless in a hospital bed. She does open her eyes from time to time but is quickly medicated and falls back into her comatose state.



That's how our weekend was spent. This afternoon they will take her back to the operating room for a bronch. We're just glad that there will be movement one way or the other. Trach, or no trach we just want our Faith back.

Jen & CO

************************UPDATE*******************************

The bronch last night went about as well as it could have. The swelling did decrease and they did not feel Faith was at the point where she needed a trach (although the real test will be when she is breathing on her own). The plan is to extubate and put her on bi-pap.Her airway is pretty floppy, thus she needs positive pressure to stent it open. ENT feels we will need to have her on bi-pap at home (hopefully just when she is sleeping). While this is good news we are anxious to see how this pans out once we are home. We don't care about the method in which Faith breathes just as long as she is comfortable.Thanks for all of the prayers!