Thursday, July 8, 2010

Truman Health Update

In the midst of all the craziness of summer we have been continue to work on Truman's muscle tone issues.  He has weekly physical therapy sessions and we also work with him daily.  He is doing incredibly well.  It is really amazing how much stronger he has become.  In the past few weeks he has really developed a sense of exploration.  He spends a lot of time trying to get into as much as possible!  He stood on his own for about 5 seconds the other day in PT which was very exciting!

The not so good news is that he has been continuing to suffer from a lot of congestion and breathing issues.  He has always had an extremely high palate which caused a lot of feeding issues when he was younger.  He also had nasal reflux which means that when he swallows he doesn't have enough strength sometimes to actually get it all the way down to his stomach so it comes up and into his nose.  Not as big of a deal when it was just formula--we were able to thicken it to help avoid some of it.  But it also caused and continues to cause a lot of congestion issues.  He also has really bad allergies that add to the issue. 

This summer has been particularly bad.  He started snoring (well snoring more) than before.  He was constantly sounding like he had a stuffed up nose.  He also developed a cough.  I finally decided it was time to head back to his Ear, Nose and Throat specialist to see if there was anything else we could do.  He took one look in his throat and one in his nose and informed me that while he does have some congestion caused by allergies...his actual problem is that his tonsils and adnoids are gigantic.  As in tonsils almost touching gigantic.  The sound that we always thought was him breathing through congestion is actually him  breathing through his tonsils and adnoids.

So Truman gets to get his tonsils and adnoids removed.  At 16 months old.  He is going to have surgery...again. 

Currently we are in a waiting mode because we are trying to get him into the ENT at Children's Mercy so he could have the surgery there.  His muscle tone issues make anethesia difficult.  But they can't get us in for an APPOINTMENT until October or November.  Then the surgery couldn't take place until December or January.  His ENT in Lawrence doesn't think we should wait that long.  He will continue to have breathing issues and we could run into a more emergency situation.  So I am trying everything I can to get him into Children's earlier but it isn't looking good.  So I am also trying to come to terms with him having surgery at LMH.  LMH is a great hospital...but it isn't a Children's hospital.  They don't deal with 16 month olds with special muscle issues every day.  How many 16 month olds do they actually have get their tonsils and adnoids out? 

I know I don't have much time to wait so I am working through every possible way I can to get into Children's and when I have exhausted all options I will call and schedule the surgery for here. 

The saga continues.  But man, I love that little boy so much.  How could you not?


  1. Heya! I'm not sure if it will do any good, but we had a similar issue trying to get Annie help at Children's. I asked a friend who had gone there, and she referred me to Dr. Pamela Nicklaus. SHE IS AWESOME. Like, words cannot describe it AWESOME. Annie had a chronic night-time cough for years. (She still has it whenever she gets the slightest cold.) I called CMH in November-- the first available appointment was May. I cried on the phone.

    Dr. VanGarsse actually called her and that helped me get in faster. My six month wait was now a one month wait-- which still seems like forever when no one is getting any sleep.

    She took out Annie's adenoids at two, as part of a three-doctor surgery extravaganza to try to determine why Annie coughed every night. Mind you, Dr. Dinsdale (Lawrence) had ALREADY taken them out. But he left a bit behind, and apparently they regenerate if even the slightest bit of adenoidal tissue is left behind.

    I can't say enough about Dr. Nicklaus. She gave me her email address! Not the one for her nurse! Hers! And she called all kinds of specialists (GI, allergist, etc) to help Annie which made getting her treatment so much faster. She really believes in doctors communicating with each other, and she does it so, so well. She sent Dr. VanGarsse a follow-up every single time we met with her. Just AWESOME.

  2. I have had his neuro call and they said we should be getting a call from the office...but that was a week ago and so far nothing. I am going to try a double team on Monday!