Blink of an Eye: Open...Closed...Open...

Tuesday, February 22, 2011

Open...Closed...Open...

We're heading back up to Stanford Children's Hospital tomorrow morning {leaving at 3:30 a.m.} for yet another procedure. The last time we were there, our MOST FANTASTIC Otolaryngologist took a look at Noah's trachea {under sedation, thankfully} and found quite a bit.

First off, Mr. Man's bone graft in his trachea looks great. There wasn't any scar tissue to remove and it was healing up quite nicely.

Actually...a bit too nicely.

Noah's trachea was trying to heal itself back closed.

EEK!!!!

We went through so much to open up Noah's closed trachea and now it's closing back up again.

EEK!!!!

So...two weeks ago...our MOST FANTASTIC Otolaryngologist took a balloon and dilated Noah's trachea. The 1 mm opening expanded to 5 mm.

Much better!!!

We'll be heading back once a month so that dilation procedure can be performed to help Noah's trachea "remember" that it is supposed to stay open.

The best case scenario is that the monthly dilation procedures {a total of five of them} will be enough to keep his trachea open. If not, we'll probably have to have yet another bone graft and start the process all over again.

EEK!!!!

Noah's body has always been good at healing...we just never knew how good!

3 comments:

DebbieFebruary 22, 2011 at 7:37 PM
Praying for a good night's sleep, a good alarm clock, safe travels, and a smooth procedure. I really think the Jackson family needs to change its name to Trooper :-)
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AmyFebruary 23, 2011 at 8:43 AM
Take care you guys. Our thoughts will be with you as you relay back and forth to the bay area.
xoxoxoxooooooooooooo<-hugs and hopes for a trachea that looks more like "O".
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ANewKindOfPerfectFebruary 23, 2011 at 10:25 AM
I hope that Noah's procedure today goes smoothly. Hopefully the dilations will teach his trachea to stay open!
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The Story

Our son, Noah Stone Jackson, was born with a very rare genetic disorder called Fraser syndrome. Among his many challenges are one “hidden eye”, a narrow trachea (which required him to have a tracheotomy), an imperforate anus (which required a colostomy), difficulty swallowing (which required a G-Tube for feedings), the fusing of his vocal chords (which means he may never speak), and club feet (which are being corrected with braces). Our family is on an amazing journey together. We are learning to walk along this path that God has planned for us, trusting in His infinite love and wisdom. We are taking each day (or each moment) as it comes and relying on each other, our friends and family, and our God for strength. We have a long road ahead of us filled with several more surgeries, lots of recovery, countless hours of therapy, and many trips to specialists around the state. Every day brings us challenges but they pale in comparison to the smiles and cuddles from our little man. Noah is our son, a true gift from God, and we cannot wait to see where this adventure leads.