Truman Update

Things have been running along smoothly so of course something had to happen to throw us off course...

Truman has had breathing issues since birth.  Actually for the first few days of his life he made this noise the nurses called "singing" to help himself breathe.  It was cute at first.  It sounded a little bit like a sigh mixed with humming.  After several hours we were all pulling our hair out.  He needed some oxygen but the nurses said it was fairly normal for c-section/early babies and that he would eventually stop.  And he did--thank God!  How horrible that I spent even a little bit of time being annoyed by my newborn?

He also has an incredibly high palette.  He was examined by a couple of doctors to make sure that he didn't have a hidden cleft palette because it was so high.  Part of his low muscle tone caused him to have nasal reflux.  Basically he didn't have the tummy muscle strength to get his milk completely swallowed all the way down to the stomach so part of the fluid would come back up and into his nasal cavity.  Yes--my kiddo spit up thru his nose.  But most of the time it didn't actually come out it just hung around in his sinuses.  We had to add a thickener to his bottles to make the fluid heavier and therefore easier to get all the way down to his tummy.  It was called Simply Thick and it was like adding gel.  It worked pretty well and it cut the issues almost down to nothing.

But as the doctors told us if you shove enough food up your nose eventually you are going to get an infection.  Interesting way to put it but true.  So the poor little guy has fought sinus infections and allergy like symptoms his entire life. 

The reflux also caused him some pretty significant issues with being on his back.  Instead of being strong enough to spit up and get it out of his mouth he would spit up and it would sit in the back of his throat.  We would lay him down on his back to change a diaper and he would suddenly turn blue because he stopped breathing.  The scariest part was that it was silent.  He didn't gag or choke.  He would just stop breathing.  We quickly realized that he wasn't going to be able to be "Back to Sleep" for the SIDS factor.  So our doctors recommended that he sleep on his stomach on our stomachs.  Our breathing would help him from getting into the deep sleep that stomach sleeping can cause and SIDS issues arise.  So Chad and I would switch nights sitting up with him laying on our stomachs while he slept and we "slept."

He also snores like a man.  A large man who has been drinking.  His has woken himself up because he snored so loud.  I didn't think much about it until I realized that snoring is also a symptom of sleep apnea.  My dad had sleep apnea for years and had to wear a special breathing mask at night because he would actually STOP BREATHING.  I started listening closely to his breathing pattern and realized that he did have several apnea episodes and it scared the poo out of me. 

As he has grown his has become stronger and a lot of the reflux issues have gone away.  But he was still constantly congested.  He frequently has a running nose and it would sound horrible.  It was that deep congested sound that you get when you have a horrible cold.  We would suck and suck and suck trying to clean out his sinuses and it never felt like we were getting any where.  Eventually his ENT gave us an electric version of the sucker and we would use this long tube and this machine would suck the boogers out.  Wow.  That was a lot of snot.  It was weirdly satisfying to see it all come out.  Tru wasn't quite as thrilled with the process as we were.

After awhile the sucking didn't seem to be doing anything.  We no longer got that satisfied tube full of boogers and the sound just got worse and worse.  His regular doctor put him on baby Singular thinking it was allergies.  The medicine helped but off and on it would get bad again no matter what we were giving him.  I finally decided to take him back to the ENT to see what we needed to do.

His doctor took one look at his throat and his eyes got big.  Then he looked in his nose and his eyes got even bigger.  He sat down across from me, but his hand on mine and told me that Truman's tonsils are almost touching.  His adenoids are bigger than he has ever seen in a child his age. 

He wasn't congested...he was trying to breathe through a blocked throat and nose.

His doctor was very concerned of course and mommy started to freak out a bit.  He got me settled down and we discussed our options.  He said that he probably wasn't this enlarged all of the time but that an allergy flair was probably causes them to be bigger.  He also said that it was time for his tonsils and adenoids to come out...sooner rather than later.

Our ENT in in Lawrence.  He is the only doctor that we have gone to that is not at Children's Mercy.  So after I left his office I immediately called Children's to get in with an ENT there so we could get his surgery done at the hospital that has been taking care of him since birth.  I just feel safe there.

The phone call didn't go as planned.  The nurse I spoke to told me that it would be October or November before we could get in for an appointment and December or January before we could get in for surgery.  I explained what the doctor had said about his breathing and how he could stop any time.  I also told her about his developmental delays and that we didn't have a diagnosis yet.  I explained the muscle tone weakness and how careful everything has to be because of this issue.  She told me that every mom who calls has a kid who is "special" and it it is common for kids with developmental issues to have ENT problems.  I nicely told her that I didn't give a rats tushy about other people's kids, just my own and then as politely as I could I asked how we could get in sooner because I was afraid he would stop breathing.

Her response?

"Unless he is coding he isn't getting in here before October or November."

WTF? 

I was so shocked and so upset that I hung up the phone.  I drove sobbing to find my mom at her hair appointment and burst into the salon like a crazy person.  Once I was calmed down and my mom could understand the words coming out of my mouth we went to work trying to find out what else we could do.  Our neurology nurse was shocked by what had happened and she promised to get some movement.  She called a little while later and said that she had us placed on a waiting list for August.  Whew.

So we waited.  And waited.  And Truman got worse.  And worse.

And now we can't wait any more.  He is having horrible nights because he is constantly waking up when he stops breathing.  He is always grabbing his head and looking at me like, "Mom DO something!" 

So we are doing something.  Truman is getting his tonsils and adenoids out at LMH next Wednesday.  We are not going to wait for Children's to be available. 

I am terrified.  I know that LMH is a great hospital.  I know my ENT is amazing.  I also know that they don't deal with developmentally delayed, low muscle tone, 18 month old babies every day. 

Our ENT spoke directly to our Neurologist and got information on anesthesia.  He is going to do it at the hospital and not the surgery center. 

I am still terrified.  I don't know if I would be this scared if he was at Children's or not.  I know that I would be nervous.  I was nervous about his surgery that he did have at Children's.  But I also knew that he was surrounded by people who did this all the time and knew little bodies. 

Second surgery...18 months old.