Wednesday, August 25, 2010

Tonsils and Adenoids are Outta Here!

Truman’s surgery to remove his tonsils and adenoids was today and everything went very well.  I was shocked by how quickly the whole process was.  We had a few hiccups to start but overall I was really happy with the care we received.

Because of Tru’s muscle weakness issues he has special anesthesia needs.  He cannot use the “gas” that makes you fall asleep before the actual anesthesia is put in the IV.  The gas can cause issues for certain muscle disorders and lead to some pretty scary complications.  So instead of getting to head into surgery, get the gas to go to sleep and then receive his IV he had to get the IV done before he went in.  IV’s on little ones are hard especially if you aren’t used to doing them.  The folks at Children’s Mercy are typically bing, bang, boom and done.  This time not so much.  They did give him some medication to relax him first and my high pain tolerance kiddo didn’t even cry through the entire pin cushion process.  That IV therapist should thank his lucky starts that he is so weirdly able to handle pain!  They also had to prep the room and remove any gas from the lines before he went in so we were running about an hour late after everything. 

We didn’t get to walk him back which was very hard.  I had to hand him over to the nurse which just killed me.  I felt like my whole world just left my arms.  It literally felt like my heart was ripped out of my chest.  He just looked at me and smiled and I sent him off.

The actually surgery only took about 30 minutes.  I was so amazed.  When I got my tonsils out in 4th grade it was major surgery.  I spent 2 nights in the hospital and I remember it being this crazy long procedure and recovery.  His ENT came out and told us it went very smooth.  He commented about the size—BIG.  He is positive that he is going to be able to breathe much better.  Our hope is that with better breathing he will sleep better, grow more and become stronger.

The experience of seeing him in the Recovery Room was horrific.  NOTHING like what we experienced for his muscle biopsy.  When we came back then he was a little fussy but comfortable.  Once he was in my arms he calmed down immediately and I gave him a bottle and he was a happy camper.  Today when I walked in the room a nurse was holding my thrashing baby who was screaming and had blood dripping down his face.  He was not really awake and he was scared and in pain.  The blood turned out to be normal secretions but he just had a lot more than normal.  He was having a really hard time breathing through them and he sounded like he was drowning.  On top of the screams he was unable to control his body and his head was flying all over the place.  I grabbed him out of the nurses arms and he calmed down a bit but he was still very confused and was really struggling to breathe.  They told me he was “much better” than when he first came out.  WTF?  THIS was better??  I cannot imagine what he was like now that he was “better.” 

They added some more pain meds and used a suction tube to help him.  I crawled onto the bed and held him on my chest just like we did every night when he was a baby.  He settled down and slept.  We had to add some oxygen to help him keep his O2 stats.  As long as he had the meds and we could keep him suctioned he was OK.  After about 45 minutes things got much better.  The doctor came in and gave us the all clear.  We removed the oxygen and checked his stats and then we were out the door.  I was simple amazed that I was taking my son home only a few hours after surgery. 

They sent us home with pain meds and Tru was OK at first.  He was sleepy and a bit whiney.  Then it was time to give him a dose of meds and it was horrible.  He screamed and grabbed at his mouth trying to get it out.  Most of it dripped down his chin and the rest was on daddy.  I had no idea how much actually went in but it wasn’t enough to keep the pain down.  He was super fussy and couldn’t get comfortable.  He wouldn’t drink.  Finally he slept and when he woke up it was time for another dose.  Same situation.  This time I think even less actually got in his body.  I called the  nurse and had them order the same meds he took after his muscle biopsy.  When he took that dose it went right in and everything was just great.  Within a few minutes he was smiling, drinking and even stood up and played on the floor for a while.  He then went into a perfect comfortable sleep.  Whew.  What a difference.

He is almost ready for another dose and hopefully this one will be the same.  The next few nights we will need to wake up everything 3-4 hours to give him his pain meds and get him to drink.  If his throat gets dry it makes the pain worse and can cause complications.  I pray that he spends the next few days sleeping and just letting himself heal.  Hopefully after a few weeks we will start to really see some improvement. 

I had a dream the other night that it was the day of Truman’s surgery and I handed him to the nurse.  A little while later the doctor came out and told us that it went well and he was doing amazing.  He couldn’t wait for us to see him.  When I got back into the room he stood up by himself, walked over to me and said “hi mommy!”  I hope that it is a sign that this surgery was the right decision and will help him accomplish all of these milestones.

Thank you to everyone who sent out prayers or good juju.  It was felt and it was powerful.  Keep us in your thoughts a few more days while he heals. 

It is done.  Thank God.

Thursday, August 19, 2010

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."


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. 

I suck at this...

I was doing so well for so long...and then I fell off the blogging wagon.  So I am getting back on the horse or whatever silly saying fits in this situation.  So much has been happening and I think I have just been living in the moment and then crashing.  I forgot how good it felt to just let it out by writing.

I pledge to blog.  I promise...well, I promise that I will try. 

Sunday, August 1, 2010

Time just flies...Scout's Summer

I swear just yesterday was the beginning of summer!  And now we only have a few days before school starts again.  We have had a wonderful, BUSY summer and I hate to see it come to an end.

Scout had a wonderful time at Camp Raintree.  Talk about an amazing program!  Every day she was involved in incredible activities--art, drama, cooking, science, board games, outdoor games, even "techo" when the kids cool off and have fun with Wii!  She also got to swim twice a day, which is just about the coolest thing ever if you ask her!  She also participated in the Iron Kids Triathlon by swimming, biking and running.  WOW.  Every day she would pop out of bed and every night she was exhausted.  She made great friends and got to catch up with old ones.  We all can't wait for next summer.

She also took Tumbling this summer.  Turns out Scout isn't a big fan of the whole tumbling thing.  I don't know if it was the actual class (her and 2 older girls) or the actual tumbling.  All I know is that she asked me to not sign her up again.  She is ready and excited to start dance and piano again in the next few weeks.

So we are prepping for school to start!  We bought all of her school supplies.  I love school supplies.  I have passed on my dorky obsession to my daughter and we spent several hours hunting the shelves, smelling the "new school supplies" smell and marking her name on each item.  She has a new backpack and lunch box and next week I will take her shopping for her first day of school outfit.  She got her hair cut on Saturday and she looks so darn cute!  I have to take the time to download pictures to show it off.  She got to go to the beauty salon and she felt amazing!

This week she will help out Mommy by being in a photo and television shoot for a new advertising campaign for the bank I work for.  She is super excited.  I swear she thinks "bank commercial today, tomorrow Hollywood!"  I wonder where she gets that?

I can't believe how grown up she has become over the summer.  She has changed so much.  I am so proud of her.  I do wish that I could stop time for just a bit and relish this age.  Before the "tween," before the "teen."  She is so confident and sure of herself.  She isn't afraid of anything and doesn't worry about what anyone thinks of her...well...mostly.  Sometimes we get hit with the copycat bug but I just remind her gently that Scout is perfect all by copycat needed. 

What a summer!