Friday, September 3, 2010

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.

40 comments:

Janay said...

Oh Jen, what a blow! Faith is really too much like Milo :0) Narrow airways are no fun to deal with, praying that the previcid and zantac work their magic and the dilation holds. Milo has some reflux even with the nissen too. He gagged and wretched for a year before I demanded previcid which magically worked even though all the "studies" said he was not refluxing. You guys are all in our prayers! **hugs**

Janay

Anonymous said...

You can count on us to pray. I guess you already have blocks under the head of her crib to help prevent the reflux.? I was wondering if after eating she can be kept upright and not put to sleep? So many things with her. She has proved them wrong before and sounds like Milo benefited from the medicine. Have hope- sounds like the doctor did several changes. We are praying one of them does the job.Sounds like yu are doing all you can. God bless you both, she is so lucky to have parents like you guys. Aunt Libby

Ann said...

Jen ... big *sigh*. I hope and pray the additional meds do the trick. You are in my thoughts and prayers.

Ann

Anonymous said...

Jen and Brian,

We are PRAYING PRAYING PRAYING.. We have called in all the troops we know to pray. My whole family is praying, we need a MIRACLE.... We believe in a God who performs those.

"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

We love you. We are with you, and walking through this very difficult time with you. I know there are no words that comfort, but know our love and prayers are with you.

Lord please wrap your arms around Jen, Brian and Faith and bring them all the comfort that you know they need during this very trying time.

All our Love,

Katie, John and LJ

Hope said...

Jen, I'm praying for Faith!!

Huge hugs to you.

twin-transfusion.com said...

Hi Jen- The meds should help, even with the nissen my boys had constant gagging and reflux until they were placed on prevacid. Zantac didn't help. But make sure you check out the contraindications for prevacid because I think some meds such as vitamins can lessen the integrity.
Will be thinking of you and Faith!

Kerry (twintotwin: Elijah and Milo's mom!)

Westermann Wonders said...

Lots of prayers to you all! Let us know if you need anything at all!

Rachel said...

Jen- Congrats first of all to Faith on getting of her trach. I will be praying that she will be able to stay this way. Hope swelling goes down and her airways opens up. Remember her name.... keep holding on to that faith and trusting in God. :)

Rachel said...
This comment has been removed by the author.
sugar magnolia said...

Keep praying and hoping! I was in a very similar situation to yours. My dd is a bit older (born in 2006) and trached at 4 months old, mainly due to narrow airway and one paralyzed vocal fold. 2 years in a row she was scoped and we were told she wasn't ready to decannulate. This past July we went in for the 3rd year in a row---and our ENT took it out. It was unexpected and amazing. She still has a bad stridor but the ENT says she'll always have it. If you want to read more about it check out my blog post around July 15.

My Three Sons said...

Big prayers from Canada...

XOXO

Jen said...

Hope things are going better. I've been thinking about all of you guys.

Alicia said...

Ugh.

Hoping and praying things are getting better every day.

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