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Showing posts with label decanulation. Show all posts
Showing posts with label decanulation. Show all posts

Friday, March 30, 2012

Bath Boy

Noah has recently discovered laying on his tummy in the bath.  For a little boy who used to have a trach...this is pretty HUGE!
He also loves to paint with colored shaving cream.  Perhaps a Monet in the making...
  
Lately, Bubs has taken to running around with his hoodie towel on after getting out of the bath.  He likes to pretend he is Superman...but I think he's more like a streaker!

Sunday, October 2, 2011

He Looked Like This

It has been a L.O.N.G couple of days.   On Wednesday, our MOST FANTASTIC Otolaryngologist performed the stoma closure surgery and declared it a success.  Shortly after the surgery Bubs looked like this...
On Thursday, Bubs was pretty grumpy {all he wanted to do was go to the car and drive home} so we spent most of the day cuddling and watching Signing Time.  On Thursday night, Mr. Man looked like this...
By Friday, Mr. Man was still grumpy, still wanted to go home, and was only pacified by endless hours of Mickey Mouse Club.  Most of the day, he looked like this...
By Friday night, Bubs looked like this...
That's right...we were discharged and on our way home.  Our MOST FANTASTIC Otolaryngologist stopped by to see us after his last surgery and noticed how well Mr. Man was doing.  He asked us if we wanted felt comfortable taking Noah home.  

Are you kidding me?  

Somehow I couldn't get the words out fast enough so I just blew him a kiss.  One hour later we were in the car making the three hour drive home.

Bubs continues to do excellent post surgery.  He has started to babble quite a bit as he explores his voice.  It is still quite hoarse and breathy but is getting stronger every day.
Thank you so much for all your prayers!  I can't wait to share with you this new path that we are on.


Friday, September 30, 2011

Pre-Meds Are Working

Noah continues to do well post surgery.  He has taken to breathing like a fish to water...so to speak.  We're all just hangin' out in the PICU, watching loads of Mickey Mouse Club and Signing Time, hoping to head home in the next several days.

Shortly before Bubs' surgery on Wednesday, the anesthesiologist gave him a pre-med.  It was intended to relax Mr. Man and, boy, did it every work.  Being the amazing father that he is, Kc took a quick video to remember our "drunk" Little Man.  Enjoy!

Thursday, September 29, 2011

Whole Sans-Hole

Well, Noah's stoma (blow-hole) closure surgery was an incredible success thanks to our MOST FANTASTIC Otolaryngologist. About two hours after we kissed our Noah goodbye we were finally escorted to his bedside in the PICU where we (in awe) watched and listened to him inhale........then exhale from (only) his most perfect mouth and nose. As our Little Man woke up from his deep anesthesia sleep his recovery went relatively well considering his breathing experience is entirely new to him. The first words Noah signed was, "MaMa", "car" and then immediately pointed towards the exit door. "MaMa, get me outa here!" That's our Noah. We thank you so much for your thoughts and prayers for our Little Man. We are expected to stay until Sunday so please keep them coming.

Tuesday, September 27, 2011

WOW!

So much has happened in the past few weeks.  First off...

we've moved!
We're now in an adorable three bedroom home with a large backyard.  Our first morning in the house we found this...
a cute, little box turtle who likes to crawl under the fence from our neighbor's backyard into ours.
Noah is in absolute HEAVEN playing in the backyard {something that was lacking in our condo}.  He shovels and digs in the dirt, rakes up the leaves, and "explores" every little square inch.  It is so fun to see my Little Man doing "boy things".

After Noah's stoma closure surgery was canceled, re-scheduled, re-re-scheduled, and re-scheduled once again, we are finally heading up to Stanford tomorrow so the MOST FANTASTIC Otolaryngologist can close my Little Man's "blow-hole".  It has been one year and three weeks since Bubs' very first procedure and we're hoping to close the book on this chapter in his life.  Please pray for our safe travels, the skill of the surgeon, the care of his nursing team, and speedy recovery for Bubs.  We promise to keep you posted.

Friday, August 26, 2011

ABC Song

Now that Noah had entered into the "Naked Neck" club {decanulated} he is trying very hard to vocalize.  He loves to make animal sounds and even has a few words he can say.  His voice is quite raspy and doesn't go above a whisper...but it is still a voice...and Bubs is trying to make more noise each and every single day.

Here, Mr. Man is signing his ABC's for you.  He gets more and more silly as the song goes on, but you can hear his laughter and sweet little whispers.
I am looking forward to seeing how much more sound he can make once his stoma {blow hole} is closed in September.

Friday, June 17, 2011

Noah needs another surgery like he needs a hole in his throat

On Wednesday,  we headed back up to Stanford for yet another scope of Noah's trachea.  
 
We had a 4:00 a.m. departure, a 7:15 a.m. arrival, and an 8:30 a.m. procedure time.  We were confident that we would be back on the road, heading home, by noon. 

That, apparently, was not to be.

By 10:30 a.m. my Little Man looked like this... 
Notice the IV {both of them}.  Notice the leads.  Notice Charlie by his side.  Notice his trach...wait...what?!?  NO TRACH!!!!!!!!!

Our MOST FANTASTIC Otolaryngologist came out after the scope looking like a ten year old boy staring at his pile of birthday presents.  "So", he said enthusiastically, "do you want to get this trach out?"

"Um...OK", we nervously responded, looking at each other for reassurance.

This is it...holy crap...this is it!

After a quick trip to the ICU, Our MOST FANTASTIC Otolaryngologist pulled Noah's trach and we all took a deep breath.

Inhale.  Exhale.

Inhale.  Exhale.

Bubs was doing it.  We were doing it.

Inhale.  Exhale.

Can you believe this???

Inhale.  Exhale.

So simple...so dramatic...so pure.

Wednesday, July 21, 2010

Medical Updates

The past two weeks have been VERY busy for the Jacksons. Noah has had five doctor's appointments {two of them out of town}, we have gone on two mini weekend vacations, and have had countless play dates and BBQs with family and friends. Here are some updates on what we learned at the doctors appointments.

Plastic Surgery:

Noah's hands continue to heal quite nicely. They were wrapped continuously for two weeks post surgery. After those initial two weeks, we unwrapped his hands nightly, gave him a bath, let the hands dry out, and then wrapped them back up. As of his appointment last week, Noah's right hand is doing excellent and doesn't have to be wrapped any more. His left hand has a bit more healing to do and needs to continue to be wrapped. Although, as you can see from pictures in previous posts, we've taken liberties in how long we let his hand "dry out".

Ophthalmology:

Last week, we headed down to Children's Hospital Los Angeles to see Noah's eye doctor. It was a LONG trip but Noah did well in the car. The Dr said Noah's left eye continues to look good and so we're going to continue his current eye drops. He also decided that Noah needs glasses. While Noah is a bit near sighted, the primary reason for the glasses is to protect his eye from possible injury. Because he's only got one, we need to do everything we can to keep it safe. We have ordered the glasses {very cute plastic children's ones} and they should be here in the next week or so.

Otolaryngology:

After Noah's last scope of his trachea, our ENT Dr referred us to a specialist at Children's Hospital Stanford. We drove up to Stanford yesterday, and once again, Noah did quite well in the car. We met our AMAZING Dr and were quite impressed with the clinic. The first thing they did was stick a long camera down Noah's nose straight into his trachea so they could get a good look around {while he was awake}. Needless to say, Noah DID NOT like this. The first thing the Dr saw was how large Noah tonsils were. "Those have got to go," he exclaimed. He was also able to see that Noah's vocal chords were "trying" to move while he was screaming and crying. "Very encouraging," he said. We discussed the MAJOR surgery to re-build Noah's trachea and possibly take out his trach. There is about a 70% success rate with severe cases like Noah. We head back up to Stanford on September 8 so the Dr can do his own scope and take out Noah's tonsils and adenoids. At that point, he will be able to make a plan whether or not to proceed with Noah's laryngotracheoplasty.

I am so blessed to be on summer vacation and not have to take days off work for all of these appointments. While I would much rather be a SAHM {stay at home mother}, I have to give thanks for the job I have, the flexibility it allows us, and the health benefits it gives Noah. We've got some major surgeries ahead of us, so I'm hoping to make the most of this summer and have as much fun as possible!

Our Family

Our Family

Daddy & Noah

Daddy & Noah

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Kc & Rebecca

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