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!

The How

I wanted to post another picture of Faith's wide mouthed smile from the past week and post a "how did we get from here ____ to here-_____." But I did not bring my camera.

It's really not as sudden as it seems.

From the day her ET tube was pulled (4 days post-surgery) Faith struggled to breathe. Initially it was thought to be secretions that she just needed to clear. Brian and I both knew there was more to her breathing issues than that.

Where things were left after the last post was if her breathing worsened or did not get better to call the doc. Well, things did not get better. We spent last Sunday in the ED, but were told there was really nothing they could do. A few days later our ENT put her on a high dose of Decadron (steroids) as a last resort. After three days of steroids Faith showed no improvement.

When I got home from work yesterday Faith was gasping for air. After speaking with our ENT she gave us the go head to drive her to the emergency department. As we strapped Faith into her car seat her breaths became shorter and she started turning blue (hence, the 911 call and ambulance ride).

Once at Children's they bronched her and discovered that her airway looked even worse than the swollen pictures from last week (the one in the middle from my previous post). *insert big sigh here* The ENT could not believe how good Faith looked prior to the bronch because the evidence showed a severely swollen airway and how she was breathing through it was unbelievable.

Prior to the bronch the hope was the docs could dilated (balloon) her airway once again. The consesues was the current state of her airway is beyond ballooning. The word "dynamic" was used to describe her airway- something we have heard before.

So that's where we stand today. Faith is intubated and on a ventilator. She is on numerous meds/sedatives and is strapped to the bed.

Not sure where we go from here. The current plan is to give her a "chill out" period where she does nto have to work to breathe. On Monday our ENT will do another bronch.

The "T" word has been thrown around a lot.

While Faith was in surgery last night I said to Brian, "I don't know what's worse- Faith coming out with a trach or keeping things the way they are and not receiving any answers."

Intubation is neither of those things, but it's definitely not where we expected to be.

At this point I am relieved that Faith is not struggling to breathe. It was a very confusing and uncomfortable week watching her work so hard to breathe.

Thank you for keeping little Faithers in your prayers,

Jen & CO.

Too tired to write in detail but I wanted to put out an update for those who might have received a frantic "prayer chain" phone call. Our story involves a 911 call, an ambulance ride, an emergency bronch, and now- Faith intubated in the PICU.

I will answer the why's/how 's tomorrow...a little unsure of them myself and this point.

Prayers appreciated,
Jen & CO

Two Steps Back..

We did not receive very encouraging news after Faith's bronch on Thursday. In fact the docs first words were, "we're lucky your daughter can breathe through a very small airway" this was followed by "we don't want to lose her airway."

Hard pill to swallow.


The alleged culprit is reflux, which just seems absurd because Faith has a nissen (a tie around her stomach so she cannot reflux, although I am assured that it can still happen). Faith has also been on Prevacid since infancy. So in an effort not to "lose her airway," ENT doubled the dose of Prevacid, put her on Zantac at night, and added another inhaled ant-inflamitory steroid to her regime (QVAR).

They also dilated her airway which provides a temporary fix if the underlying issues (the suggested reflux) is not controled.



Don't mean to gross you out, but the pictures really tell the story:

Above: This picture was taken on 8/27 when they pulled the ET tube at the first bronch after surgery. The two white areas (top and bottom) are the rib grafts.

Above: This picture was taken 9/2. As you can see the airway is extremely swollen you can't even detect the grafts (the swollen vocal folds are threatening to move the grafts).

Phew! This picture was taken after the ENT dilated (or ballooned) the airway (9/2). What a difference, eh?

ENT asked us to pay very close attention to how Faith was breathing after the dilation vs. how she was breathing the night before (w/a very compromised airway). The bad news is she pretty much sounds the same. In fact, she sounds like she did before she was trached when she was 6 months old which is very, very disconcerting.

They want to see us in another week to repeat a bronch. However if her breathing worsens (once again, listening for the sounds) we need to go in sooner.

Well folks, looks like it's time to up the prayer anti! Good thing we know the right kind of troops to call in!

Keep the Faith!

Jen & CO.

We're HOME!!! It's hard to believe- we were expecting to stay 2-3 weeks and ended up staying 8 days. Woohoo! Taking the limited sedation route really paid off.

Tomorrow Faith goes back to the hospital for a bronchoscopy. We have to go through the whole O.R. rigmarole and she will be put under anesthesia again. This is to ensure the graft is still in place and everything is healing well. Faith will undergo bronchs like this for the next few weeks.

I'm curious to speak with our ENT tomorrow and get her take on Faith's breathing (which is pretty heavy and often times labored). We're thinking she just needs to learn to clear her secretions, which is probably painful at the moment.

I will update after the bronch tomorrow.

Keep the Faith!
Jen & CO.