I haven't written in, well, forever. Actually almost a year. It has been a strange year and for some reason I could never motivate myself to write. I thought about writing a lot. In fact I started a few posts and then ended up deleting them. I would tell myself that I didn't "need" to write any more. There were no major changes. Life has been plugging along and it didn't seem like anything that someone would care to read about. I then realized what I had done. I had made this about other people and not about my need to get things out of my brain. I went back to my "perfect" thought process...if my life wasn't going to encourage readership then it wasn't important enough. Boo.
So I have decided it is time to return to writing with my original intent. To be open and honest...with myself first and with anyone who is reading second. I have been motivated today for a very specific reason.
Today was our last day of tiny-k Early Intervention. The program we have been with since T was 4 months old. The provide services for kids with special needs or developmental delays. We have had physical, occupational and speech therapies with them for almost 3 years. The program is only for birth to age 3 and Truman's third birthday is Friday. We will no transition from tiny-k to the school district. Which is completely overwhelming.
Our time with tiny-k has been incredible. Truman and I (and very frequently my mom) have had weekly visits with our therapists since he was an infant. I say "our" because they truly were "our" therapists. They cared as much about me as they did Truman. They held my hand, listened to my fears and helped get me through the tears. Some days were full of excitement with giant strides but most days were simply continuing to work on all areas of my little man's development. They were able to push him in ways that I never could. They were able to encourage me to let go of some of my fears and let him fail. We are so blessed to have had this time with them.
Saying good bye today meant more than just the therapy visits. It was also saying good bye to a lot of my beliefs on where we would be at this point in T's life. When we started at 4 months old I believed we would have a few visits and he would catch up and everything would be just fine. After the first few months went by I still believed that he would be able to eventually get there and we would move past our time with tiny-k. I don't remember the exact moment when I realized that he wasn't going to graduate from tiny-k services before he aged out of them...but I do remember that at some point I came to terms with it.
I set a new thought process in place...that he would be "fine" by the time he would need to move on to the school district. Again, we would figure out what was "wrong" and "fix" it and all would be good in the world. I never wanted to believe that he would enter the school system at age 3 with an IEP. But here we are.
Today when the therapists left I didn't get to celebrate. I didn't get to laugh at where we had been and find comfort in where we are today. Truman didn't graduate.
Tomorrow we will set down with the school district to review his evaluation and go over his IEP (Individual Education Program). My son, at 3 years old, will already be labeled before we would even be thinking about kindergarten. We will start his "permanent file."
Growing up I was always terrified of my permanent file at school. My grade, my behavior, my activities were all part of that dang file that somehow would make or break my future. I remember hearing about standardized test being put in my permanent file as a first grader and freaking out that I hadn't done well enough.
Now T will have his permanent file started for him with statistics and age appropriate development graphs, charts of his progress (or lack of) and an IEP of goals.
My family has never had a child who struggled with school. Not really. Not like this. Grade card time has always been a time of bragging and paying for straight A's. I never got below a B...ever. My nieces are geniuses. Like really geniuses on the official IQ scale. My daughter is an amazing student who is constantly excelling past her grade level.
I don't know how to do this. I don't know how to work the system of special education. I don't know how to make sure he is getting everything he needs even with budget cuts and lack of resources. I don't know how to fight for him. And to be honest I don't think it is right that I have to start figuring it all out at 3 years old.
So, we said good bye to a lot of things today. To amazing women who have changed our lives. To being a baby. To pretending that everything is going to be "fixed" at some point. To not having a permanent file. To not having to fight for services. To knowing what to expect. To not admitting that T truly has special needs.
I don't think I am ready but I guess there is no looking back.
Tuesday, February 28, 2012
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.
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.
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.
Sunday, December 12, 2010
Sunday, November 21, 2010
Truman’s New Toy
The incredible therapists with tiny-k let Truman borrow a child size walker to see how he did. He LOVES it. At first he was a bit overwhelmed by the entire thing and like to just walk around it instead of actually using it to walk. But this weekend he really got the hang of it and started zooming around!
I took a little video but you will see at the end that his sister distracted him a bit. After that point he just crawled over to her and tried to get her to play with him. The whole point of the walker is to let him choose to use it independently….so I had to give up my video pursuits.
Saturday, November 13, 2010
If I only had a brain…
The good news is that Truman has a brain!
OK…that was a bad joke. Of course he has a brain! And it is a beautiful one too.
We got the results from our neurologist finally. He called us himself…which is one of the things we love about him. It is also incredibly terrifying when I hear his voice. Why would the doctor call if it was good news? Right?
But it was good news…mostly.
His brain has “minor changes” that do not “raise any red flags or give a specific diagnosis.” He has all of the parts and pieces and there is no evidence of degeneration. All really great news. Of course hearing that there are any “changes” makes my skin crawl but with no visual it is easier to to deal with.
The hard part is the thing we have struggled with throughout this entire process…we don’t have an answer. We know something is wrong but we can’t figure out what it is.
His neurologist understands our frustration. Every test that we take we pray for a negative result but with every negative result we are further from understanding what is going on with our son. He has tested and tested and tested and just can’t find the answer. He cares enough to call us personally to talk through the next steps and to apologize for not being able to find a diagnosis.
Have you ever had a doctor apologize to you? Me either.
So we will continue with physical, occupational and speech therapies. We have an appointment with Cranio-facial in January along with another Swallow Study. We are also due to go back to Genetics. Every day we will keep working with him and trying to give him all of the support he needs to get stronger, gain balance, learn words, etc., etc. In other words—we don’t stop fighting but we don’t know what we are fighting against.
It feels like we are flailing around in the dark just hoping to land a hit. And it is so hard for people to understand. I keep hearing “no news is good news…right?” Well of course! We do not want ANY of the things we have been testing for to be the diagnosis. But maybe if we had a diagnosis we would know that we were doing the right things for him. Or we would be able to prepare for the future. Not knowing what could happen next is impossible.
Good news…mostly.
Thursday, November 4, 2010
MRI Tomorrow
We have officially hit the point we were hoping to avoid. Tru was given until 18 months to walk or we would need to do an MRI to check out his beautiful brain. Well, here we are at 20 months and still no walking…
Our very blunt neurologist (whom we love) in his French accent told us:
”We need to see if all of the parts of his brain are there.”
Hmmm. Didn’t ever realize there as a chance that all of the parts wouldn’t be there. After all he is living, breathing, crawling, babbling, hugging, kissing, splashing, laughing, etc. etc. It didn’t seem like an option. But, I guess it is.
The other thing we are looking for is the ratio of grey matter to white matter or something like that. Apparently by this age the brain should look fully formed. If you have an MRI any younger it is difficult to see everything because it is all still white and not differentiated. I guess we can see if it looks “normal” or not.
He will have to be put completely under because the MRI has to be done completely still. He is 20 months old and will go under anesthesia for the 3rd time. It never gets any easier. The memory of him coming out of anesthesia after the tonsil surgery is still very fresh in my mind…and it is not a pleasant memory.
We should also be receiving the results of some the genetic testing we did in September fairly soon. Again—we are keeping our fingers crossed that everything comes back negative. It is such a weird position to be in. We are trying so hard to figure out what is going on with him but each time we test we hope to not find an answer.
The good news is that I have reached a point where I no longer completely freak out every time we are waiting for an answer. I can put it all in a box on the shelf and not deal with it every second of the day. Occasionally the box decides to fall off the shelf and hit me the head making me crazed for a few hours. Typically this happens at night when the house gets quiet enough for me to think.
Here we go again…
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