Saturday, October 29, 2011

Tuesday, October 25th, 2011

After two months in preschool the inevitable has happened - I got my first cold.  Although I went to school Tuesday, I was not feeling so hot.  Last week Mommy had made an appointment with my pediatrician for tonight because of a bad trach smell.  Unfortunately, in the throes of a cold, I was coughing up so many secretions that the trach smell was gone.  Dr Norlin went ahead and got a speciman to culture, but we'll have to see if anything grows.  Even though I have a cold it seems pretty run of the mill and some pedialyte and Tylenol seems to be controlling it for now.

Peyton Nicole Smith

Sunday, October 23rd, 2011

Jackson and I have memberships to the aquarium and despite going lots of times this year we never get tired of going back.  So we met up this morning a soon as it opened and ran around the place together.  Jackson was disappointed that the frog area was under construction but soon it will have sea otters instead.

After going home for naps we met back up for dinner for Uncle Jason's birthday at Bonzai, a Japanese steakhouse.  Jackson, Traiton and I didn't really like all the fire but thought the chef throwing shrimp at the parents was fun! 

Peyton Nicole Smith

Wednesday, October 19th, 2011

Meet the newest "member" of our family!  It is the iPad 2 with the iAdapter case and the Proloquo2go app.  That's right, Mommy put in a request to the insurance company and it was approved!  A few weeks ago, we went to the Apple store in the mall and got the iPad.  Then, Mommy ordered the iAdapter case.  It took a few weeks to get it but it was worth the wait.  I love my iPad and anybody I meet I am proud to announce that I have one.  Most are just a little amazed that I am barely four and I have one! 

I am a little ahead of the curve with this technology so it is going to take some time to get assistance from the school district on how to incorporate it into the classroom.  Mommy is also going to have to read the manual and figure out how to customize the app for me.  Despite the work ahead, it is a huge accomplishment to have gotten this covered by insurance and it will be a totally cool way to communicate with friends, family and peers!

Peyton Nicole Smith

Monday, October 17th, 2011

Mommy in the making!

Saturday, October 22, 2011

Saturday, October 15th, 2011

OK so if you have never been to Cornbelly's it is awesome!!!  (And my parents even thought it was pretty cool).  We were there right as they opened with Ava and her parents, Ethan and his dad, and Jackson and his parents.  And we were all pretty overwhelmed with all there was to do.  It was perfect weather, and from pig races to a corn maze to a cow train we just couldn't get enough and we still didn't get to do everything.  We definately want to go back one more time before they close for the year.

Peyton Nicole Smith

Tuesday, October 11th, 2011

Happy Birthday to my Daddy!  To celebrate the big 36, I spent the night at my grandparents while Mommy and Daddy went to see the Foo Fighters in concert.  My parents stopped and had dinner first and then watched as folks started to arrive.  They were suprised at the diversity of the crowed - it wasn't just oldies like them!

Peyton Nicole Smith

Sunday, October 9th, 2011

Guess what I am going to be for Halloween?

Saturday, October 8th, 2011

They are pretty fuzzy but you can see that my Daddy was celebrating a birthday!  Karen's parents were in town from Inman, Nebraska so we went to dinner at Karen's tonight.  And yes, Karen put 36 candles on the cheesecake!

Peyton Nicole Smith

Tuesday, October 4, 2011

Monday, October 3rd, 2011

A note from Mommy:

After four years of talking to surgeons, pediatricians, ENT's and pulmonologists you would think I would be an expert on Peyton's airway (or lack thereof).  When Peyton had her bronchoscopy a few months back, Dr Muntz was clear that her airway was still very small but didn't get into much detail and I was anxious to get back to recovery to see her.  Today when we saw Dr Muntz I felt I had a little more time to ask some questions.  The original reason for the appointment was to discuss the abutement surgery for Peyton's BAHA's.  When he indicated that he doesn't do these any longer and to see one of the two others in the practice that specialize in it - it presented an opportunity to get in a general discussion about Peyton's airway.

Dr Muntz presented a check list to decannulation:

1. Seeing the larynx during bronchoscopy
2. Daytime capping trials
3. Nightime capping trials

When Dr Muntz did Peyton's bronchoscopy this summer, not only was her airway small, he could not even visualize her larynx and it was almost impossible to get the tube in.  So when he is talking small he means very very small.  For kids with micrognathia there are usually two ways to "grow" the airway, one being the jaw distraction and one being general growth of the child.  Since Peyton is not even a year out from her jaw distraction, what did that mean?  Dr Muntz has treated a handful of patients while in St Louis (13 years) and since being at Primary Children's - maybe 15 in total.  And one thing he has seen is that Nager patients don't respond the same way to distraction as other children with micrognathia - the results just aren't the same.  Nager patients are unique to themselves (something I seem to keep hearing).    So what about general growth of the child - what should we expect with that?  Peyton is really small for her age and each child of course is different but kids who grow into a bigger airway through general growth of their bodies he felt happened around 8 or so. 

Dr Muntz said with the airway we want to watch it every year because one year he may not be able to see the larynx and then all of a sudden the next year it is there.  He also wanted to clarify that there have been children decannulated that there larynx was not visable.  We'll get to that in a minute....

The second requirement is daytime capping and the ability for Peyton to cough up her secretions so that she doesn't develop pneumonia.  Peyton can already cap for long stretches during the day so we know she can tolerate capping.  Another good test would be to have her capped during a cold to see if she can get everything up and out.

The last requirement is nightime capping.  Since we are not anywhere close to completing surgeries, Dr Muntz is in no rush to complete one.  But if surgeries were done, her daytime capping continues as it is and she failed her nightime sleep study it doesn't mean she could not be decannulated.  His recommendation for most kids is that if the only issue with the airway is sleeping, he would trade a trach for decannulation and CPAP.  When I brought up the low compliance rate for adults with CPAP he was quick to agree - he said somewhere around 75% of adults using CPAP are not compliant.  However, he felt that children were actually the opposite - he estimated 75% of kids were compliant espesically if they were old enough to understand the trade off - trach or cpap. 

So what we are left with is that the airway may grow enough on it's own or it may not.  It may require additional jaw distractions or it may not.  If we get to a point where most of Peyton's surgeries are completed, she is completely stable and capping trials during the day are still going well but she is failing a sleep study there is a possibility of removing the trach. But it would be risky if an emergent need for an airway arose.

Knowing what I now know about Nager kids and Peyton in general, I can pretty much bet we are going to be stuck making that very difficult decision in the future.  There is no crystal ball to tell us if there would be an emergent need for an airway in the future.  We also can't rely on outcomes for surgeries such as jaw distractions based on kids that do not have Nager Syndrome - these kids are just not comparable.  We are blazing our own trail with not much more than educated guesses from doctor's to help direct us along the way. 

On the way home I wasn't crying or angry - but I still have a lot of emotional investment in getting her trach out and I wasn't sure why.  And then it hit me.  For some reason I believe that decannulation is my personal responsibility and if it doesn't happen it is ultimately my personal failure.  As a result of today's conversation with Dr Muntz I finally have a sense that none of this is really in my control.  Ok I know that sounds funny - it never really has been in my control - but I don't think I have really believed that before now.  In the back of my mind if I got her to the right doctors at the right time for the right surgeries I could make it happen.  Today driving home it occurred to me that despite getting her to the right doctors at the right time for the right surgeries her body may just not ever allow for a decannulation and there is not a damn thing I or anyone else can do about it.  You may think that was a devestating concept but just the opposite - although it was a very sobering thought - I also felt some weight lifting off my shoulders.  So there is a new mantra running through my head now - It is not my fault she has a trach and it won't be my fault if she can't get it out.  And someday it may be her mantra as well - It is not my fault I have a trach and it won't be my fault if I can't get it out. 

Sunday, October 2nd, 2011


With a bad weather weekend coming up, Jackson, Ethan, Ava and I made our mommies take us to Wheeler Farm this weekend instead.  It was a beautiful fall morning and we got to go through a corn maze, go on a wagon ride and pick out pumpkins from the pumpkin patch together.  Halloween can't come soon enough!

Peyton Nicole Smith