Tuesday, April 26, 2011

Finally...the surgery story

Wow.  What a ride we have been on.  My little man is such a fighter and he has proven it over and over again this past week.

As I wrote about before Truman needed surgery to repair the cleft in his laryex and to place tubes in his ears.  We scheduled the surgery with his amazing ENT at Children's Mercy, Dr. Latz for last Wednesday.  The plan was fairly straight forward.  He would be in surgery for about an hour to get the two things done and then spend the night to monitor his pain level before going home early Thursday morning.  Not what happened...

We arrived and he was prepped for surgery.  He was goofy on Versed and smiling his big 'ol grin when the nurse wheeled him away in a wagon.

Hardest moment.  Letting your child go...I can't describe the feeling.

We settled into the waiting room with our laptops and snacks and tried to keep our minds occupied.  After about an hour I was called to the desk for a phone call from the doctor.  Hmm...that hadn't happend before.  I went into a little waiting room and received the call.  Apparently during the scope she had found that his (using layman's terms) voicebox was attached to the back of his throat.  The attachment caused some of the weird sounds that his sometimes makes when he is breathing as well as snoring, breathing issues, etc.  She asked for permission to cut it away from the throat to free it and hopefully help with those issues.  I gave my permission and they sent a nurse down for additional signatures.  Ah, medical malpractice coverage!

The surgery took longer because of the extra steps and after about an hour and 45 minutes we were told that he was in recovery.  The doctor came down and discussed the surgery with us.  She said that she had repaired the cleft and that it had gone smoothly.  She discussed the additional steps taken to cut away his voicebox and what that could mean for the future.  She also told us that she had felt the submucosal cleft and that he did in fact have one.  Then she told us about putting the tubes in his ears.  She was shocked by the amount of fluid that was present.  In fact the fluid was so thick and gooey that she described it as a "rope" that she pulled out of the ear.  Ew and ew.  She was very positive about the whole surgery and how she thought he would recover.  She showed us pictures and told us that she was going to use his case in an upcoming presentation she was giving about the surgery.  They took video of the surgery and she is going to give us a copy.  Not sure I want to see it...but he might think it is cool when he is older.

As we wrapped up she told us that he was having some issues coming out of the anethesia so recovery was going to be a little longer than we thought.  I figured he was having a similiar reaction to his tonsil surgery so I wasn't too worried.  He just freaks out a bit coming out of the sleep especially when he is in pain.

So...we waited.  And we waited.  And we waited.  And I started to get scared.  I had this feeling in the pit of my stomach that something was really wrong.

Eventually our names were called and I jumped and ran to the information woman.  She said he was ready to see us in Reunion Alley so we gathered our stuff and ran to the elevator.  My mom and dad were with us at this point and we all stood there waiting impatiently to get our hands on our little man.  We were supposed to meet him and walk with him to his room.

As I saw the stretcher pull into the hallway I knew that something was very wrong.  His little body was turned to the side and his face was covered with an oxygen mask.  His doctor and two nurses were with him.  His little body was basically convulsing with every breath.  You could hear him breathing from down the hallway.  Focused completely on him I got to the side of the stretcher and got my hands on his body.  He was pale...so incredibly pale. 

The nurses explained that he was having a very difficult time keeping his oxygen stats up.  Every time they would try to remove the oxygen he would "fall like a rock."  They told us they were taking him to the Pediatric ICU so he could get the extra attention he needed while he recovered.  They were smiling but you could see their concern behind their eyes.  I smiled and made some joke about him being a fighter.  They laughed and told us that he was pretty mad when he would wake up and had taken a few swings at the nurses.  Atta boy.

We went to check in at the PICU while they took him to get him set up.  We were told it would be about 20-30 minutes.  And again we waited.  And waited.  And waited.  And I was freaked out.

Over an hour passed and then another 1/2 hour went by before we were called by the nurse to come back to the room.  Once we got there the world stopped for a moment.

My beautiful boy was attached to machines.  Wires were everywhere and 3 nurses and a doctor were surrounding his bed.  He was so tiny and so pale.  So incredibly pale.  He had a breathing tube down his nose and the sound of his breathing filled the room.  He was very, very still and then I noticed that his arms and legs were restrained to the side of the bed.

The nurses explained that his throat had swelled because of the surgery and that it had made it very difficult for him to breathe.  He also was having a hard time keeping his tongue from blocking the back of his throat.  The breathing sounds were coming from his throat...not his lungs.  I looked at the monitor and his O2 level was at 69.  The nurses said he was much better.  They had given him a sedative and multiple pain medications to keep him calm.  He was wild everytime he woke up and would try and fight off the doctors and nurses.  He would flail his little body around and try and pull out the IV's, wires and breathing tube. 

I don't know how to describe what he looked like and I don't know how to explain how I was feeling...so I won't.  I actually don't want to go back there anyway.

After about 5 hours his breathing started to stabilize.  They added a full face mask to help get higher levels of oxygen into him.  Eventually I convinced them to let me hold him and immediately he began to do better.  His heart rate slowed, his respiration rate went down and his O2 levels were stronger.  And he slept peacefully. 

When the our nurse transitioned out for the night I overheard her explaining Truman's situation to the new nurse.  They were whispering and I assume they didn't think I was listening.  She told her that it was a very scary time and that Truman was "touch and go" for awhile at the beginning. 

I stopped breathing for a moment when I heard those words.

Nobody wants to think about their child being "touch and go."  The reality of everything that had just happened hit me so hard that I could barely contain myself.

We spent the night in the PICU with each hour showing more and more improvement.  Eventually they weaned him off the sedatives and then were able to remove the breathing tube.  We were moved to a regular room about 6:00 in the morning.  We requested a twin bed so I could snuggle up and sleep with him in my arms.  I didn't want to let go.  The doctors came and said he looked and sounded great and we could head home that afternoon.

It was strange.  Within just a few short hours my son went from "touch and go" to out the door.  He is such a fighter.  He never ceases to amaze me.

He has been doing well recovering from the surgery.  We got our first few smiles and then lots of hugs and kisses and I knew we were going to be OK.  He has had a lot of pain which is always hard to watch.  We go in tomorrow to see his doctor for a recheck and discussion of what comes next.  He will have a follow up hearing test and swollow study in the upcoming weeks.

I have never experienced the fear that I did last Wednesday.  I thought that I had.  We have been through a great deal of fear and anxiety with Truman.  But nothing compares to what just happened.  And that stays with you.  You can move on and laugh and joke.  You can experience joy and relief.  You can feel all of the everyday emotions and move through the world they way always have...but that fear doesn't go away.  It burrows into your soul and sits. 

Squeeze your babies and loved ones tight. 

Thanks for all of the love, prayers and support.  We felt it and I truly believe that it worked.  The flood of prayers and good juju filled that hospital room and helped him take every breath.

Wednesday, March 9, 2011

Little Guy Medical Update

I know that I haven't written in forever and a day. I have way too much to catch up on. But we had a very interesting day at Children's Mercy today that I need to write about. Writing helps me to work through my "stuff" when dealing with new information.

To start off Truman has been doing really great...in general. We have had some major leaps forward including the fact that he has really started walking! This is a huge, amazing, fabulous and crazy step in his development. (Get it...step?) He had been taking a few independent steps here and there but he really couldn't keep it up much longer than that. He turned 2 last week (yes, I will blog about that later) and suddenly he decided it was time. He still walks a bit like Frankenstein but he is really trucking. He now prefers to walk and will make that choice instead of going down to crawl. He isn't strong enough to stand up independently yet so he has to get somewhere to pull up. So amazing.

He was super sick at the end of January. We had 3 full weeks of misery (mama was sick too) with strep, sinus infections and bronchitis. Poor guy was just miserable. Three rounds of antibiotics later he seems to be on the mend.

Today we went to "the" Ear, Nose and Throat specialist at Children's Mercy. The doctor was recommended by multiple doctors we go to as a person who specializes in kiddos with muscle disorders and developmental delay. To be honest I was still a bit skeptical about the whole ENT Department at Children's (see early post) but I finally gave in. After waiting an hour we finally were introduced to Dr. Latz, who turned out to be just as great as everyone said she was.

She listened to our whole, long medical story. She was genuinely interested. She did the regular checking around and realized his ears were really full of wax. He has always had the waxiest ears! She said she couldn't see anything so they needed to be cleaned out before we did anything. She said the extra wax was actually good because it helps to prevent outer ear infections. Truman has actually never been diagnosed with a single ear infection! There have been comments by doctors about his ears being hard to look in because of the wax but she was the first to say that it was impossible to see anything.

So off we go to clean them out, under a microscope. Very gross yet very interesting. After the cleaning she looked in his ear with this super scope thing that also blew a little bit of air into the ear canal. The air helps to open up the parts and see behind the ear drum. Again...no other doctor has ever used one of those bad boys...including his ENT in Lawrence. She immediately saw some fluid behind the ear drum.

She decided we needed to get a hearing test...right then and there. Off we went and after an hour of waiting (can you tell I am tired of waiting today?) we were put in a little room together. First she put this little machine thing up to his ears to test them for ear drum movement. Both ears had normal "volume" but neither ear drum was moving. Shock #1.

Then she went in the other room and we sat in front of a stuffed alligator that had glowing eyes. On each side was a box with a stuffed animal that drummed inside. She began to speak with her voice coming from different places in the room. When he looked in the right direction the corresponding stuffed animal would light up and start drumming. Then the alligator’s eyes would glow to get his attention back to the center of the room. VERY INTERESTING! I had always wondered how they tested kid's hearing. It isn't like we can tell him to raise his hand when he hears the beep! After the talking part she started having sounds play around the room as well.

Shock #2...Truman didn't look for many of the sounds. He was sitting in my lap and I would wait for him to turn his head...and nothing. It seemed like the lower then tone the less he looked.

The technician came in and told me that he had failed that part of the hearing test. Wow.

The next test put a little tube thing in his ear attached to another machine. The machine measured higher pitched sounds and again if the ear drum moved.

Nope. He failed on his left ear. Shock #3. The good news was he actually passed on his right ear! Yea.

Back we head to the room with my mind going nuts. My kid can't hear? What? How is that even possible? He responds when talked to. He babbles and laughs. He watches TV. He knows his name and my voice. But he also won't turn and get his photo taken when I try to get his attention. He isn't talking words and has very few consonant sounds. All of the consonants he uses are non-explosive (i.e. m and n not c or t). He has always had balance issues...thought to be caused by his "low muscle tone."

When the doctor came back into the room she was actually not surprised. She already knew that he wasn't going to do well on the hearing test. The good news is that the hearing loss doesn't seem to be caused by nerve or physical issues. She thinks it is all caused by a major buildup of fluid behind his ear drums. He has major fluid and has NEVER HAD AN EAR INFECTION? Why the heck does he have fluid in his ears? She really wants him to get tubes in his ears to drain the fluid. She thinks that it will completely solve the hearing issue as well as help his balance.

Off we go to have a scope stuck down his nose so she could take a look at the palette and vocal cords. The first thing she sees is that Truman does indeed have a submucosal cleft in his palette. We have had 3 different doctors tell us he doesn't...including the doctor who sent us to the ENT. The cleft seems to be small but it is there all the same.

The next thing she finds is a Laryngeal Cleft or a small cleft in the larynx. The opening is what has caused him to have the nasal reflux and made him fail the last swallow study.

Crap--I never wrote about that. We did another swallow study almost last month and his nasal reflux and aspirations were actually worse than they were before. He went from being able to swallow a "nectar" consistency to having reflux on applesauce. Not a good thing. We were put back on thickener but this time it is a "honey" consistency which is as thick as you are probably imaging. Not fun. It also means no more ice cream, popsicles or anything else we can't thicken before it is swallowed.

Back to today. The Laryngeal Cleft has probably always been there. When he had his tonsils they were so big that they covered up most of the hole. When they were removed the hole didn't have anything to stop the fluid from flowing. This cleft is fixable. Basically she will go in with a syringe filled with this gel stuff. She injects the gel into the hole and it expands to fill up the hole. Hopefully this is a permanent procedure but we don't know that for sure. The great news is that it should stop all of the food/fluid from going back up into his nose!! No more choking, eye running, sinus infections, etc.!!!

She also saw that he has an "immature voicebox."  I am still not exactly sure what this means.  I understand that it is a muscle and it goes along with his low muscle tone...but I really don't understand how this affects him.  Or if it can get better.  Or if it has anything to do with the other stuff.  We had so much going on that this somehow slipped thru the cracks and I will need to revisit it on our next appointment.

She can do the tubes and the cleft injection at the same time. It will mean another time under anesthesia and an overnight stay at the hospital. She wants us to wait a bit because the hospital is full of really sick kids with the flu and RSV. She doesn't want to expose T to a secondary infection because his immune system sucks. It would not be a good thing for him to end up with a major case of the flu after surgery. She also wants to recheck the fluid to make sure that it is really sticking around. It could be there from his previous illness at the end of January...but she really doubts it.  So we will go back for a recheck mid-April with plans for surgery at the beginning of May.

So my child can't hear. He has a cleft palate and a hole in his larynx. What next?

We are looking at 2 different surgeries. The palate cannot be done at the same time as the hole and tubes. Apparently they don't usually fix them until around 4 years old. They might push up the timeline if he continues to have medical issues with nasal reflux caused by that space being there. She doesn't know how much problem it really is causing. Fixing the other parts will let us she just how bad it really is.

Lots of information. Still processing. My heart is breaking that my little man has not been able to hear all of this time. It is also terrifying. I can't imagine my son growing up without being able to hear. But I am not going to go there right now. I just can't.

The doctor thinks that he will get the tubes and the hole fixed and show us just how happy he is by talking and gaining muscle strength when he has the ability to balance. Wouldn't that be amazing??

Longest post ever...I wish I had something witty to say to end it. But I am exhausted and overwhelmed. What else is new, right? I am going to sleep on it and hopefully will be ready to deal in the morning.