Monday, August 30, 2010

Happy Girl

Thank you for blessing us all with your beautiful comments...they mean so much to us.

My lack of frequent updating means the task of keeping Faith in her room has become frequently difficulty (a good problem to have).

Yesterday Faith came up from the PICU and is now on the 9th floor. :)

And now to the question you may have been wondering..

No monumental sounds yet...I have to say I was expecting Faith to be able fully vocalize once extubated, which has not been the case. We can hear some raspy very faint cries when she is upset, no other than that we are waiting.

She does however sound like Darth Vader. She has tons of secretions and will need to get used to clearing them on her own. We cannot deep suction because it might compromise the graft. Watching her labor to breathe has been difficult but we've been assured that this is par for the course.

ENT said it may take a few weeks for the swelling of her chords to subside. They also say we will know in two weeks if the graft has "took"and the reconstruction was successful (I know, I thought her breathing on her own meant it successful but as we know Faith is a sprinter).

And speaking of ENT, in the end our doc was right. If we stuck to the original plan, Faith would be weaning off sedation today. She was right when she said this approach means a much quicker recovery. In fact, Faith seemed to be at her best when she was off all heavy meds. For this, we are extremely grateful that we have a doc. who knows what she's doing and puts up with us. :)

We're hoping to get out of here sometime this week, which is just AMAZING!

Thanks for checking in,

Jen & CO

Thursday, August 26, 2010

Next Steps

Tomorrow they will bronch Faith to see if the swelling has gone down. If things look good they will pull the breathing tube- and that my friends is when we find out if the surgery was successful.

Right now Faith is basically breathing with a trach in her nose. When that tube is pulled, the on-her-own breathing begins.

I am not trying to be pessimistic or show a lack of Faith but I do not think tomorrow will be the day the tube is pulled. The average timeline is 5-10 days- tomorrow is only day 5. We all know Faith adheres to a timeline entirely of her own.

If it's pulled tomorrow and she breathes- awesome. If not, a few more days is not going to hurt.

And for those of you who've been voice yet (remember she still has a "trach in her nose"). When that tube comes out- so will her voice.

Here's to unexpected surprises,

Jen & CO

Tuesday, August 24, 2010

Today was a difficult day.

We went into this expecting our daughter to be comatose for the 7 days her breathing tube is in. Our ENT on the other hand had other ideas. There are two schools of thought on post-reconstruction and we are caught in the middle.

On one side (the side we were prepared for) the patient is totally sedated for the 7-10 post surgery so the airway/graft can heal and there is no risk of the breathing tube (in her nose) coming out.

The side we were not prepared for is the "awake" recovery where patients are fully awake (albeit, still on pain meds) with the tube hanging out their noses. The pro of this side is quicker recovery and no risk of post-surgical infections that occur when patients are sedentary (and due to Faith's chronic lung disease she is at high risk for this). Of course the BIG con is that if the breathing tube comes out- in the words of our nurse today, "it can be life threatening." The tube is not re-inserted like an ET tube and must be placed in the OR.

So while the PICU team is advocating for sedation, and our ENT is very much against it.

Faith is living in an in-between zone right now- she is awake and aware of her surroundings but extremely groggy and thrashing around. There is very little that calms her (except for very temporary boluses of sedatives) and our new job is to be constantly vigilant that her breathing tube stays in place.

Ah-yi-yi! And to think I brought enough reading material to last a week!

We just need to get through the next six days. The plan is to keep the tube in until sometime next week. Until then we are hunkered down in the PICU.

Thanks for checking in.



Update: This morning we have a clearer perspective and are more comfortable with the plan. Faith is still very groggy and agitated, lightening up the sedatives might actually help her come out of this funk. She is still on high doses of narcotics so we know she is not in pain (just annoyed that she is attached to so many different things). Today they took the drain out of her neck, and yesterday they removed the drain from her chest incision (where they removed the rib cartridge). We are moving in the right direction. :)

Monday, August 23, 2010

May we present to you....

The newest member of the naked neck club.

Ok so you might not be able to tell now b/c she came out with a lot more tubes than she went in with...but these are temporary.

Everything went well- although the real test will be when she is breathing on her own.

The good news is she did it. :)

Thank you again for the tremendous show of support.

We love you all!!

More tomorrow!
Jen & CO

My wonderful friend Tina just texted this pic of her beautiful family. (Thanks guys!)

We have never felt so supported before. We just wanted to send a huge thank you to everyone who has texted, called, e-mail, commented, and have said prayers for our little girl today.

We are blown away by your support.

Faith has been in surgery for the past 3 hours and we were just told we have a "few more" to go.

I will definitely post a picture tonight.

Keep the Faith!!!
Jen & CO.

Sunday, August 22, 2010

All Systems Go

Surgery is at 1pm and is estimated to be 4 hours. We will update as soon as we can.

Jen :)

Monday, August 16, 2010

Mysterious (Dino) Ways...

Lately Faith has been into dinosaurs. She loves to watch them on TV and play with tiny plastic dino figurines, but most of all she likes to read about them in books.

When she was a resident of TCH she received the book, How Do Dinosaurs Get Well Soon? Which, of course she loves. So when her LTR surgery was approaching we decided to peruse the internet for more books from the same series so she had something to look forward to post surgery.

The titles we found couldn't have been more perfect:

How do Dinosaurs Go To School? (click, click)

How do Dinosaurs Play With Their Friends?
(Faith's favorite word is "friends." Whenever she sees a child she signs "friends.")(click, click)

How Do Dinosaurs Play With Their Dogs? (click, click)

How Do Dinosaurs Play With Their Cats? (very enthusiastic click- Faith is also very into cats at the moment).

Before I knew it my online shopping cart had reached Free Shipping mode. (Always a sign you have purchased too much- it's how they get ya!)

Nevertheless we gave in as wanted nothing but the best for Faith as she recovered. Just when I was about the check out I glanced at a blurb for the up and coming How Do Dinosaurs Book:

How Do Dinosaurs Laugh Out Loud?

OMG! Heaven couldn't have come up with a better title.

(CLICK, CLICK) This was going to be perfect.

To my disappointment this set of double clicks did not result in the book being deposited into my shopping cart.

"Book Not Yet Available- Pre-Order Today for September 1st Publication"

Of course I took this as a sign. I even wrote another post about it, that of course did make my blogger publication when her surgery was canceled. I promised myself I would not purchase it until we learned how Faith could laugh out loud and lamented about how unfair it was that the world would now how dinosaurs laugh before my daughter does (melodramatic, I know).

I was wrong.


As it turns out we will find out how Dinosaurs and Faith laugh out loud.

Monday, August 23rd.

After receiving the information that we would have to wait another year we received another call that there is a new opening- and after this date there would be no "third chances."

The timing couldn't be worse. August 23rd is the first day of school for Brian (the for third me).

But God's timing is perfect and we have full FAITH that HE ordained this special date for Faith. While we will never fully understand the plan for the flip flop we know there is a PURPOSE, because HIS timing is so perfect He knew it was time for Faith to laugh with the dinosaurs.

Jen & CO.

Monday, August 2, 2010

Best Laid Plans

If we were here:

We wouldn't be able to be here...

And we certainly wouldn't be able to do this...

And this would be out of the question...

Exploring new places....?

Meeting new faces?


But while the whole situation still rubs us the wrong way..

Least we forget that we still have this..

So we pledge to do less of this...

And a lot more of this...

So it's time to put on our big girl/boy panties hats and see where this new detour takes us.

Thanks for all of your words of encouragement. They mean the world to us.

Promises to update more often,
Jen & CO.

PS: Faith finally turned a corner today. She is now walking (for those of us who know her spunk it's hard to imagine that she wouldn't walk for 9 days) and our diaper quota is back to normal.