Tonsils, Adnoids, & Ear Tubes

Well blog followers, I thought today's topic should be about tonsils, adenoids, and ear tubes, because it seems as though everyone I know is having to deal with these issues at the moment. I have been asked so many questions lately about our experience -- apparently I'm the local ENT expert or something. Seriously, just within the past few days I have spoken to at least 10 parents (if not more, I've lost count) about this stuff.

I can't remember if I shared our experience with the whole ENT thing before, and quite frankly I am too tired & lazy to go back and re-read all of my previous blog posts. So I apologize ahead of time if this info is a repeat.

We've been down the tonsil/adenoid/ear tube road twice.....son #3 had to have this procedure as did Taz. In some ways, son #3's experience was much easier probably because he was much younger at the time of his surgery. If memory serves me correctly, he was around 3 or 4 years old at the time. He had numerous ear infections and sore throats prior to this surgery....and it seems like he was constantly getting sick with some type of crud, especially during the winter. During one of our many trips to the doctor's office, the doctor determined that son #3 had what they called "kissing tonsils".....his tonsils were so large that they were basically "kissing" (touching each other) to the point that it was causing problems with his breathing. The stupid tonsils were almost blocking his airway.....which helped to explain why he snored so loudly at night when he slept. 

The doctor gave us a referral to the local ENT specialist. After a very lengthy exam and some hearing tests, the ENT doctor confirmed what the pediatrician suggested....son #3's tonsils needed to come out immediately....partly due to the fact that they were so large and "kissing", and partly because they were the cause of his numerous ear infections. Before I could wrap my head around all of the information the ENT doctor had given us, they had surgery scheduled for later that week! Boy that ENT doctor didn't mess around at all! I honestly believe the whole thing was harder for me than it was for son #3, partly because he was so young he didn't have all of the questions & fear like I had. His recovery time went by fairly quickly and thankfully there were no serious issues or complications (like bleeding when the scabs fall off -- sorry for the details, but yes that can happen.). His throat did bleed a little bit when the scabs fell off, but not too much. I pushed the fluids with him and followed all of the instructions that the ENT doctor had given us.

The only real "issue" with son #3's experience, was the fact that since he was so young he was still in that phase of wanting to shove stuff up his nose, in his ears, etc. thus as a result he put something (God only knows what, if I remember correctly it was a half eaten gummy bear) in his left ear a few months after his surgery which caused that ear tube to fall out. Thus he still has some issues with that ear as far as whenever he gets sick, he will usually develop an ear infection in that ear. The other issue we had was during bath time.....he used to love to lay down in the water during baths, and because of the ear tubes he couldn't have his ears submerged in the water. Oh and of course I can't forget what it was like once summer rolled around....he wanted to swim & splash around in the kiddie pool with his brothers, but we had to watch him really close because he wouldn't keep the special ear plugs in his ears....thus we had to make sure he didn't get his head under water until the other ear tube fell out like it was supposed to. I don't remember when the other tube fell out, because I honestly don't remember seeing it, but his doctor confirmed that it was gone at our last visit.

Taz's experience was completely different. When Taz had this procedure, he was much older (in 5th grade). Like his younger brother, it seems as though all winter long he was catching one form of the crud after another and each time he would also develop ear infections, swollen tonsils, etc. Back to the ENT doctor we went. The thought of surgery scared the hell out of me, partly because of Taz's fear of needles, doctors, etc. I had no idea how they would ever be able to put an IV in his arm or how he would respond after the surgery. I spent a LOT of time talking to the ENT doctor and sharing my concerns.....amazingly they had nothing that would help to explain this whole procedure in a way that a child could understand -- especially a child on the AI spectrum. Of course they had brochures for the parents to read which contained all sorts of medical jargon, but nothing that was "simple" for a child to comprehend what was about to take place. I contacted our ISD team and searched for some type of book or social story.....and of course they had nothing that we could use. So, I put on my thinking cap and decided to create my own social story book.

I met with the ENT doctor once again, this time by myself (kids stayed at home with hubby). I shared my social story book idea with the doctor and explained what I wanted to do. Our ENT was so awesome, he had one of the staff members take me on a tour of the surgery center and they allowed me to take my camera in with me.....so I was able to take photos of the ENT doctor, the charge nurse, the cubicle where Taz would be for his surgery prep, etc. I took photos of everything.....the IV stand & bag, the anesthesia doctor, the anesthesia mask, the recovery room, the reception desk & waiting area, the changing room, a hospital gown, the outside of the building....and one of the nurses was kind enough to go into an empty operating room and take photos of everything in there for me (I wasn't allowed to do it just because they have to keep the room "sterile" and there was someone scheduled for surgery in that room within a few minutes). I went home and got busy uploading the photos and creating the surgery social story book. I kept things simple -- brief descriptions on each page with a photo of whatever it was, and at the end described what recovery would be like. I had photos of the posters that were on the wall at the ENT's office, showing what the throat and tonsils looked like as well as what the inside of an ear looks like along with an ear tube. This social story book was definitely a lot longer than most of the ones I've made in the past, however I wanted to make sure that I had all of the bases covered and Taz would feel comfortable knowing what would occur before, during, and after his surgery.

As luck would have it, just when I had finished putting the book together and had it laminated and put in a spiral binding, the ENT's office called and said that due to Taz's age and Autism issues (fear of needles, etc) they thought it would be best if he had his surgery done at the main hospital instead of the surgery center. Part of that decision was also due to the fact that the last Autism medication he had been on had caused problems with his heart, so the ENT doctor felt that doing things at the main hospital would be better just in case there was an issue during surgery. OK, that freaked me out a bit but I understood his logic....better safe than sorry right? Since the surgery location was changing, that meant some of the procedure would change...thus I had to make some changes to the social story book. No big deal....I went to visit the hospital one day while the kids were at school, and with camera in hand I spoke to the head of the surgery department and explained why I was there and what my plan was. I had the social story book with me....

I will admit, the guy was pretty impressed with the book and was very accommodating. He had a staff member take me on a tour of the surgery area, and we made notes along the way of what type of things would be different compared to the info I already had in the book. The staff member assisted me in taking whatever photos we had to re-take for making changes to the book, and explained how on the day of surgery we'd have to check-in at the main lobby, then ride the elevator to the surgical floor, etc. Taz would be placed in basically his own hospital room before the procedure, then after spending time in Recovery 1, he'd be taken back to that room. Hmmm, maybe this would be that bad after all? His hospital room had a TV which would help to keep him focused, and once he was moved back to the room he'd spend some time there doing what they called "recovery phase 2".....part of which required he have something simple to eat before being discharged.

I went home, made the needed changes to the book, and began to prepare Taz for what to expect. I must say, he did so much better than I expected! The only issue we had -- the anesthesia doctor that was suppose to be there for his procedure (who also had experience with Autistic kids) was called out for an emergency issue, thus we had a different anesthesia doctor who was a complete asshole (sorry but there is no other way to describe this guy!). He did not want to go the route that had been planned, and instead insisted on trying to put the IV in before the surgery. He quickly realized that following the plan the previous guy and our ENT doctor made would be a much better route to go! They did the prep work and gave Taz some stuff to make him sleepy....then put the IV in once they got into the operating room. I sat in the waiting room, hoping & praying that all would go well....trying not to climb the walls while I waited. The ENT doctor came out and said all went well and explained what took place during surgery. He said they were just finishing things up in the operating room, and Taz would be going into recovery where I'd be able to join him in a few minutes that way I'd be there when he woke up. Then the ENT doctor went off to do his next surgery.

Well I sat there and waited, and no one came out to get me! While I was waiting, my former OBGYN doctor came strolling through the waiting room. I saw him and asked if he'd check on Taz for me (and explained what was going on), and of course he said yes. Apparently the ENT doctor had forgotten to tell the asshole anesthesia guy & recovery room staff that I had the OK to join Taz in the Recovery 1 area, thus that is why no one came out to get me. My former OBGYN doctor walked me back to the area, and needless to say the anesthesia guy wasn't happy about it....but oh well! The recovery room nurses all thought it was funny, because apparently this anesthesia guy is a real jerk and no one on staff liked him. Anyhow, everything went well in recovery and they moved Taz to his room for phase 2.....everything went well and before long we were on our way home. I have to admit, he did really well during the time it took for his throat to heal.....aside from the fact that on day #3 he was refusing to drink anything because his throat was so sore, and I had to practically hold him down and force fluids into him. Due to his issues, the school & ISD had granted him "surgery leave" so he was home for 2 weeks after his surgery to help insure that he'd be fully recovered before returning to school. Of course he tried to milk it and wanted to stay home for a few extra days!

He did well after returning to school and the only issue we had was trying to keep him from getting water in his ears. The one thing I remember, is that he seemed to cycle back to previous behavior.....he insisted on wearing his sound proof headphones. Apparently the tubes in his ears made his hearing a lot more sensitive. And it wasn't so much the sounds, as it was the pitch of certain sounds. For example, he could sit trackside at a Nascar race without any problems....but if he was in the music room, gym, or lunchroom he insisted on wearing his headphones. And he could hear every little sound -- like in the classroom, his seat was near the fish tank thus he could hear the little air bubbles going through the filter in the tank, he could hear the hum of the computer that was across the room, and "hear" each tick of the clock that was above the teacher's desk. In many ways it was a sensory overload for his hearing. Ok, back to the ear tubes....

One ear tube fell out later that summer, but the other one was still in his ear. The ENT said not to worry, it would fall out on it's own. Unfortunately that didn't happen, and once Taz entered middle school he began to complain about his ear and had behavior issues. His regular doctor insisted that the tube wasn't in his ear, and there was nothing wrong with his ear or his hearing even though Taz complained about it constantly. The strange thing was, he didn't complain about the pain but instead was constantly saying things like "it feels like something is in my ear" and asking me to clean his ears. Now this is a child who has NEVER in his life thus far wanted anything to do with getting his ears cleaned with a q-tip.....and yet here he was constantly asking me (numerous times) on a daily basis to clean his ears and saying that it felt like something was in his ear. Thus that in itself was not "normal" for Taz, so back to the ENT doctor we went. A hearing test was done and they determined that he basically had almost zero hearing in that ear! It took a lengthy exam and the use of a special scope to determine that yes the tube was still in his ear....and it had fused itself into his ear drum. As if that wasn't bad enough, the ENT then informed me that the tube had a HUGE polyp formed around/over it! The ENT was surprised that the regular doctor wasn't able to see the polyp. From his description, it was pretty huge!

The ENT prescribed some ear drops, but that didn't work to reduce the polyp and make the tube come out on it's own. Thus within a week, another surgery was scheduled....yep, they'd have to go in and remove the tube and hope that it didn't cause any permanent damage to Taz's hearing in that ear. The ENT had told me, that based on what he saw inside of Taz's ear and what his score was on the hearing test, there was a good chance that this tube had caused some serious damage and Taz may end up deaf in that ear. I remember that I just sat there and sobbed....thankfully Taz was in the other room with the exam nurse at the time, and didn't have to witness my breakdown. I just kept thinking to myself on the drive home "what the hell does this poor kid have to go through next?" -- I was angry, not at the ENT of course because I understand this was a fluke thing and not his fault. But I was angry and I wanted to blame someone, thus I began to curse God. I just kept thinking about all of the things that Taz had struggled with thus far, then to throw partial deafness into the mix....sigh, it was almost too much for me to handle. But I knew I had to suck it up, pull up my "big girl panties" and push myself to put aside my feelings so I could be strong for Taz and help him to get through this.

According to the ENT doctor, all things considered this would still be a fairly simple procedure, thus it could be done at the surgery center....no need to go to the main hospital like before. Taz did amazingly well this time around, all things considered. Of course due to his age & size, they had to put the IV in before the surgery since it wouldn't take as long as what the first surgery did. Yep, that had me concerned a lot! Of course Taz surprised me....and the nurse we had was absolutely amazing! I explained to her about Taz's issues, and we decided we'd try doing the IV with just her and I in the room. Of course Taz wanted no part of that needle, and started to have some major anxiety. She stopped and told him he could have 5 minutes to relax, then she'd try again. Taz heard a little kid in the next room screaming and the nurse explained that it would be that child's turn next. She told Taz that he had to cooperate cause that little kid was really sick, and they needed to do his surgery as soon as possible, but since Taz was first on the list that other child would have to wait. Taz has always had a soft spot for little kids, and I could tell that it bothered him to hear that other child cry. He took a deep breath, looked at the nurse and said "ok, I'm ready." The nurse smiled and then she proceeded to explain exactly what would be done, step by step, to insert the IV needle and line into Taz's hand. Taz asked her if he could help to put the needle in....that made me laugh! She told him no he couldn't, but he could help her out by holding the roll of surgical tape.

The nurse left the room and gave Taz his 5 minutes, then came back and asked if he was ready. He laughed and told her "I told you 5 minutes ago that I was." Of course that made both of us laugh! True to her word, she walked him through each step and explained in simple terms what would happen, what she was doing, what each thing was for, etc. It blew me away at how well Taz did.....he did not jerk or fight once, he held very still while she put the needle in and taped it into place. Then she hung the IV bag and we waited for the medicine to kick in. Taz became very goofy and loopy.....it was pretty comical, and I even used my cell phone to record part of it to show to hubby later. They took him back to the operating room and the procedure was over in no time! It seems like we weren't in recovery for that long, and on our way home shortly afterwards. He did amazingly well with this recovery......and was back to his old self rather quickly. Later while discussing things with the ENT doctor, he said that due to how the tube was fused to Taz's ear and the size of the polyp that had formed, it had to have been causing Taz extreme pain for quite a while....yet that kid hardly ever said anything about his ear hurting, although his behavior issues did tell us that something wasn't right. Oh, by the way....Taz's hearing is 100% back to normal/perfect in that ear now!

Thus for the most part, our experiences with the whole ear tubes, tonsils, and adenoids stuff was a positive experience for both Taz and his younger brother. Yes there were a few issues, but we survived. Our ENT doctor is amazing, the staff at the surgery center and hospital were amazing, and the recovery time needed for both of them went by rather quickly. My only real issue is with how the one tube fell out rather quickly for both boys, and of course the way the one tube fused itself to Taz's ear drum. But thankfully even though their regular doctor was an idiot (which is part of the reason why we switched doctors), the ENT doctor was right on top of things and able to figure out the problem & get surgery scheduled to fix it rather quickly. And thanks to my creativity and stubbornness (since I couldn't find anything that would work for what I wanted, I created my own social story book), the ENT's office now has a copy of the social story book featuring Taz that they can use to help explain the procedure to other kids.....especially those who are on the Autism spectrum. I'm guessing that is part of the reason why I had 3 different parents come up to me during the school's Open House the other night and say "hey, aren't you Taz's mom? The lady who made that book for Doctor K's office?" -- apparently their kids knew who Taz was, thus it has helped them to feel more comfortable about their upcoming surgeries knowing that someone they knew had the same procedure.

Pretty cool huh? Of course I know that EVERYONE within our school district knows who Taz is.....he's pretty much been the poster boy/ISD guinea pig since entering our public school district, however I didn't realize until the other night just how much of a "celebrity" we are among the AI parents & kids within our district. I never realized just how much our experiences and story have helped others thus far. But I guess that is part of why I do all that I do right? As I've said from day one....first and foremost, I do these things to help Taz, and if it can help some other child or parent in the process, then our journey has been worth every tear, every stressful moment, etc.