Tracheostomy - Should I Stay or Should I Go?

The Next Step:

Austin has a sleep study tonight, Monday, February 8th {On...believe it or not his 2nd Tubiversary!!}

Based on the DLB surgery, Austin's ENT has determined that prior to his sleep study Austin's tracheostomy tube will be downsized to 3.0mm (from 3.5mm) and once he is asleep it will be capped.

What happens after that is up Austin.

With any luck he will breathe thru his mouth and nose. If all the angels in heaven unite he will also no longer need Oxygen. You get the idea.

A typical sleep study begins at 9PM and ends at 5:30AM. Austin will strapped to a number of machines and monitored, once he awakens in the morning my job is to change his trach back to its regular size. Then we wait for the results.

The offical report takes 6-8 weeks to get back to the ENT -- Can you believe the wait? So we will return to see the ENT in April to find out exactly he well {or badly} he did. Now unofficially I can tell during the study how he is doing, since I am not going to be sleeping much. For instance if he is reacting badly to the capping or needs more O2 a technichian will come into the room to remove the cap or place him on back on oxygen. So I will have some idea how it is going.

I know all this sounds like blah, blah, blah and you just want to know one thing...when does his Trach get removed?

Unfortunately, it is just not that simple. We will wait until April for the ENT's recommendation. Then in late May we will meet with the Craniofacial Team and our Pulmonologist to get their recommendations. {Can you believe it has almost been a year already?} There are several ways this could go, so I don't want anyone to get their hopes up yet. But so far things are progressing nicely towards an eventual decannulation (removal of tracheostomy tube).

Let's hope next year we have no Trachiversary to celebrate.

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Tracheostomy - The DL&B Update

As you know Austin had outpatient surgery on his second Trachiversary. Sorry for the delayed update, but I needed to get a few things clarified before I shared them.

Essentially this surgery was done for one reason: to assess the stability of Austin's airway without his Trach. So that means they took a camera and peeked from his mouth down to his lungs to make sure that "if" his tracheostomy tube were removed (decannulated) there would NOT be any obstruction in his airway.

The medical term for the procedure is direct laryngoscopy and bronchoscopy (or DL&B). Although the surgery itself is only about 15 minutes in length, Austin was sedated; so it calls for an OR, an IV and recovery, the whole nine yards. He had an entire team that consisted of his ENT, the resident ENT, Anesthesiologist, OR Nurse, Recovery Nurse and his very own room on the surgical floor before & after surgery. I guess that's what a Trach gets you these days.





We arrived at 8AM and left the hospital at 3:15PM. We hung out in surgical admitting for longer than I cared for. Austin killed some time climbing up and down the fire truck bed and watching dvds.  After a few hours Austin took his nap, which was a blessing. The nurse and I swapped places so we could both grab a bite to eat.

Then at 12:30PM we went up to Pre-Op on the 2nd floor and watched some I Love Lucy before the procedure, it reminded me of our hospital stay back in Texas. Really laughter is the BEST medicine...well, at least it helped me!

Here is what they found:

{Warning: Graphic Pictures, may not be suitable for children}









What you are looking at is Austin's Trach Tube (right, white) and some fibrous tissue/granuloma (left). That granuloma tissue was removed which resulted in slight bleeding, but was not in anyway painful to Austin. According to his ENT the granuloma nwas caused by a reaction to the trach tube (plastic) rubbing in his airway for 2 years, he does not believe it will grow back.




The second picture is the entry to his lungs...ALL CLEAR on both sides!


Read more: Tracheostomy - Should I Stay or Should I Go? to find out what Austin's ENT did with this information.


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Rocky Balboa 1, Austin 0

Austin was enjoying a fairly quick recovery from his surgery yesterday. Then, KABOOM!! woozy from the anesthesia he trips, falls down and gashes his eye. Nice work, Son! Anyone know a decent cut man?






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Happy Trachiversary?

Today, February 1, 2010, marks the Two year anniversary of Austin's airway surgery. Without a doubt it saved his life. A quick recap for the new followers, Austin participated in a sleep deprivation study on January 25, 2008 that determined his small airway was basically slowly suffocating him. Exactly one week later on February 1, 2008 he had surgery, a tracheotomy, to create an alternate airway. The crazy thing is up until that very week I had no idea how sick he really was. From the moment Doctor ENT told me he needed a tracheotomy, our lives were irrevocably changed.  For better or for worse, today is Austin's 2nd Trachiversary.





Now exactly how does One celebrate a Trachiversary? Do you...celebrate?

I suppose it depends on how you look at it. 

I could chose to celebrate the fact that two years later Austin is still very much alive and doing kid stuff. Or I could chose to bemoan the fact that our lives are filled with lots of chaos and disruption due to one little piece of plastic that I live in constant fear of losing every minute of every, single day. Tomorrow I reserve the right to complain, but not today. Today I chose to be thankful.

I am thankful that a little over two years ago I took an off-hand suggestion from one doctor and relayed it to another. I am thankful that his ENT was quick to take action to save Austin's life. I am thankful that I did not fear the Trach more than I feared losing my 3 month old son. I am thankful that I made the right decision for us, in my mind it was the ONLY choice. I would do it over again in a heartbeat.

Today I am also feeling hopeful, as Austin is once again in surgery this morning. His new ENT is going to remove his tracheostomy tube and determine if Austin's airway is stable. He will place a camera down his airway right up to his lungs. Although only about 20 minutes in length, this procedure could bring Austin one very BIG step closer to having his Trach capped and then, removed.

Today I hope that if there are any tears at all they are of joy and not sadness. But I don't want to get ahead of myself. Next Monday he has a sleep study to help further determine his airway progress. Could we really be one week away from changing our lives again? Now, that is reason to celebrate.


Thanks for peeking,

Blenderized Diet: Where Did We Start?

Austin has a love/hate relationship with food, he loves to look at it, but hates to actually place it in his mouth and swallow it. Although on occasion he does comply . So it's no surprise that I, in turn have a love/hate relationship with feeding him. Having a child with an oral aversion is no picnic. On the one hand there is no messy high chair to clean, and on the other hand, no messy high chair to clean. Austin actually uses his high chair more frequently to watch TV and get his breathing treatments than he does to eat. Sad, but true.

Feeling perhaps we had hit a wall on the feeding front a few months ago, I got interested in feeding him real food through his G-tube. Austin has been on the same formula for exactly a year now. No offense to the makers, but I want some real food in my toddler. This formula has done its job, but a little color, a little variety and some natural rather than manufactured food is now in order. Something about putting formula in a two year old seems wrong, no matter how great a product it is.

In my research the first thing I learned is that a blenderized diet calls for a VERY powerful blender. Your average household blender will not do the trick adequately. The who's who of powerful blending mommas lead me to two choices: Vita-Mix or Blendtec. Vita-Mix which has a program for special needs kids. If you have a letter of medical necessity you may be eligible for a medical discount. Great idea, but it still puts the purchase price at several hundred dollars. YIKES!

So needless to say I was pining for a high powered blender for months. Sure I could run out and purchase one on credit, or I could let my parents purchase one for Austin for Christmas both ideas made me nervous. That is a lot of money to spend if the blenderized diet fails. I am sure it would make some awesome margaritas, but not to the tune of 400 buckaroos!

Then my friend, Susan posted on her blog about how she purchased a Blendtec blender from Costco and used it to make her daughter's formula. I fell in love, until I found that these blenders also have a retail cost starting at $399. Double YIKES!

Then one fine November day I saw this: "Tweet why you need a Blendtec blender and you could win 1!" Cool, I entered. Imagine my utter and complete surprise a week later when I saw this:





I won the Blendtec Total blender for Austin. OMG!!





And that, is how we got started on a blenderized diet.




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Disclosure: I won this blender in a contest fair & square, this is not a review or paid advertisement. All opinions expressed are mine & mine alone. Occasionally Austin will interject, but unless noted, it's all me.

Extraordinary Measures

Currently my Tracheostomy parent support group is a buzz about a new Brendan Fraser movie, Extraordinary Measures. And who wouldn't be attracted to a movie with the tagline - Don't hope for a miracle. Make One. It's pure genius. It's so good I want to "borrow" it for my new blog. Oh did I say new blog? Silly me. Anyway, back to Brendan Fraser, the movie opens here in Los Angeles tomorrow and I am very interested to see it.

The movie is based on the real life experience of an inspirational parent, John Crowley, fighting against doctors, insurance and time for his critically ill children. Sound familiar? The children have a rare genetic disease and Trachs. Sound REALLY familiar? So maybe interested isn't quite the right word, EXCITED fits the bill much better.

I'm not sure how gritty it will get in terms of showing how difficult the life of a family caring for a medically fragile child really is. Although I did hear that it might be a tear jerker and the audience may cheer at one point so I am pretty sure they do a good job of conveying that aspect. Although not news to me, I suppose in Hollywood the real story is about John Crowley's dedication to being an advocate for his children. His wife, Aileen Crowley, admits to being asked that question that most parents of special needs children get 'How do you do it?' I like her answer, because it's the same one I give. 'You just do it.'

I choose to surround myself by those who wake up every morning and fight. That is how I do it. And the simple fact that you are here reading along and sharing Austin's life shows me that that how you roll too! So if when the nurse comes to work tomorrow I am going to get myself some popcorn and go see a matinee. Alone.

I am beyond happy that a major motion picture studio, albeit a new one, has decided this story is worth telling. Thank you, CBS Films. Based on the movie trailer, it sort of reminds me of Lorenzo's Oil, which I loved. The movie also stars Harrison Ford, as the driven scientist and Keri Russell, as mom Aileen. I hope you will get a chance to check this one out too!

If you are looking for other movies featuring a physically or mentally challenged character you can check out this list that Ellen has on her blog. If I had Netflix I would add them all.


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Toddlers Gone Wild!

Sometimes you are having a bad day and need some cheering up.


Allow me...


(Please excuse the cell phone video...clearly I need to upgrade.)

Isn't he cute?

8 months ago this child couldn't even walk!


In case you were wondering here is the song to which Austin is actually dancing...

Hot dog! (Hot dog)
Hot dog!

Hot dog, hot dog, hot diggety dog
Now we got ears, it's time for cheers

Hot dog, hot dog, the problem's solved
Hot dog, hot dog, hot diggety dog

Grab my boots and a sandwich
Let's start a parade
Get the coconut drum kit
For Daisy to play

Hot dog, hot dog, hot diggety dog
We're taking off, we're dancing now
Hot dog, leapfrog, and holy cow
Hot dog, hot dog, hot diggety dog

Hot dog, hot dog, hot diggety dog
It's a brand new day
Whatcha waiting for?
Get up, stretch out, stomp on the floor

Hot dog, hot dog, hot diggety dog
Hot dog, hot dog, hot diggety dog
We're splitting the scene
We're full of beans

So long for now from Mickey Mouse (That's me!)
And the Mickey Mouse Clubhouse


{At the end of The Monkees video you can see him wave to Mickey.}






Thanks for peeking,