Tuesday, September 30, 2008

Happy News! (Yes, it does exist)

I couldn't decide which picture to post so I thought I'd share them both. :) In a rare occasion tonight after Faith's bath she kept her hooded towel on. Always the perfect poser, look how she has her hand perfectly angled to cover up her "not for internet" parts. (I think I typed the same thing a few months ago!)

I hadn't planned on writing about Faith's pulmonary appointment, but when I checked my e-mail this morning I was touched by the number of people who actually wanted to know! I didn't think people cared that much (and I don't mean that in an Eeyore sort of way) appointments are just appointments these days, but this one was a little bit exciting!

The plan with the Faith and the ventilator has been to let her grow, develop, and hopefully her bronchial malacia will decrease and she eventually won't need the positive pressure the vent provides. It's not that Faith cannot breathe on her own, she needs the pressure to stint open her floppy bronchial tubes. For some time now we've suspected that she might be able to do more on her own than she is receiving. So after some discussion, yesterday at her appointment we took her off of the ventilator (and just on 1/2 liter of oxygen) for seven minutes! Last year at this time Faith was on a rate of 24, and if disconnected would turn blue in a matter of seconds. What a difference a year makes!

With that being said, the plan is to leave Faith on the vent. When she gets over this bout of illness they will lower the amount of pressure she is receiving from a PEEP of 8 to 6. She will still remain on the ventilator for Winter. She is underweight and needs to grow. This is OK with us. Yesterday just gave us some hope that she could be off by summer. Just the thought of that sends shivers up my spine (in a good way). I cannot even imagine what it would be like put Faith in a car with just an oxygen tank..or move her from room to room in the house without having to the roll the ventilator around.

To help get her through the winter, Faith will be receiving an inhaled steroid (Pulmicort) two times a day(Thank you for the suggestion Karen! And Ann and Janay for reiterating it!) as well as her monthly snagis shot.

So that's it! Pretty exciting stuff. On another note, this past weekend we had another trachies get together! Of course Faith was M.I.A. but that didn't stop me from hanging out with some of my favorite people. Here are some pics from the day:

Above: "Hey- you have one of those too?" Below: Ms. Marissa shows off her PMV.
Below:(L-R: Marissa, Milo, Noel and her mom, Tina). It wouldn't be a trach gathering without the group picture meltdown. And Faith wasn't even there to pull hair! Once again Mr. Milo is the typical guy, "What's with the drama ladies?"

On a closing note I want to tell you all how proud I am of Brian. Yesterday he spoke to a class of over 50 nursing students about our journey. He also wanted to share with them what makes a good nurse. Something we have learned a lot about over the past year!!!

And for those of you in constant worry and angst over our sleeping situation (mainly our moms), Faith is sleeping A LOT better. For the first time (ever) I had to have an alarm wake me up for her 2am feed last night. Now that didn't stop her from wanting to get up for the day at 4am...but from 11-2 it was pure sleep! Now that's what we're talking about! ;)

Have a wonderful rest of your week!
Brian and Jen :)


Marissa said...

O M G !!!!

I nearly jumped out of my seat when I read she came off the vent for 7 WHOLE MINUTES! That is so awesome! And the sleep thing, that is great too!

I am so glad something is finally looking good for you guys.

Kuddos to Brian for telling it like it is!

Take care,


Hope said...

Oh wow....I mean WOW!!
I literally read the first part, got all teary and had to reread it b/c everything was blurry. I am just so thrilled! 7 minutes! WTG Faith!

I can't wait until Summer to see how Faith does.

Ann said...

That's great news Jen.

"Be like a Zebra"

I'm with you!


Anonymous said...

Yeah! that is great news! We will have to have a party when Faith gets to come off her vent!! Yeah, I am so excited to hear it went so well. And Brian, thanks for talking to those nursing students, that is so great to have them hear your story, we need more good nurses. Well take care and hope to see you soon.
God bless, Beth

Karen said...

Dear Jen,

Congratulations on the great news. Way to go Faith! You have the right to relish in anything good that happens in your life - no guilt! I hope things continue to head in this direction.

I hope the Pulmicort also helps prevent some illness this winter!

Take care,

Kristie said...

That is awesome news. I agree, what a difference a year makes. I just love her curls!

Janay said...


I am so excited for you guys! Faith is doing so well, remember a year ago when we were all so nervous about moving our kids to the new hospital & how long they were going to be without humidity? It IS so amazing how much difference a year makes.

Ya know what the nicest part of 24/7 CPAP is? The knowledge that your kiddo can breath by themselves if they disconnect, it's not such an urgent thing to get the vent back on, a few minutes is no big deal. It's nice to not live on the edge all the time :0) I just have a really good feeling about Faith being off the vent by next summer...