Last time I wrote, I made a promise that I would share all about Aiden's ENT visit to Dr. Hotaling...the good, the bad, the traumatic. Some of it I'd prefer to forget!
I woke up at noon and got ready for our exciting visit to Dr. Hotaling...the ENT specialist that I always refer to as the guy who saved Aiden's life. I couldn't wait! He hasn't seen Aiden since before his jaw distraction. When we got there and we were called in to Dr. Hotaling office, the nurse we always see was AMAZED!!! First, at how BIG he was...then those curls...and of course, his new chiseled jaw line. She couldn't get over it. We went over Aiden's meds, how he was doing, going thru his pre-visit 'interview' and Aiden started to do his full blown chatting. Mouth open, flashing his teefers, showing off his tongue. He didn't leave anything out! Once she was done, she left and we wait for Dr. Hotaling.
Once he entered...I saw the look on his face. He probably forgot that he was even going to HAVE the jaw distraction at that time. He couldn't believe it. I had my phone out with a before and after picture...the latest set of pictures of my blog...and that REALLY showed the drastic results. He asked us a ton of questions...how painful was the jaw distraction, is he talking, how was his secretions, how were his ears. We told him that Aiden wasn't thrilled out the pin turning, especially at the beginning and towards the very end. We told him we weren't sure if it was anger, fear, or flat out pain. He couldn't tell us. We let him know about his recent pneumonia and ear infection. We told him that he had an ear tube replaced as Dr. Patel place the jaw distractor. We shared our excitement about all the changes that have taken place since the jaw distraction....seeing his tongue, hearing his 'new' voice, him forming words...like 'mama', 'no no', 'ya ya ya', 'la la la'. We told him that he seemed to be swallowing more, but sometimes having more secretions...that he liked to store it in his mouth like a squirrel in winter. We asked if there was anything that could help with that and that we heard about a saliva patch. He discourage using that method. It was usually used for someone with cerebral palsy...someone who couldn't control the saliva. We asked him about any risks of Aiden traveling...mainly to WASHINGTON STATE!....and in his words...'go to Hawaii...go to Tahiti....bring me with, I need a vacation.' All we needed to do is take the proper precautions as we would if we were going to my brothers or something. Then we started talking about the next step....Aiden's swallow study. I asked if it was time. He said 'yes!', the sooner better. He reminded us that it was going to be a long, TOUGH road getting him to learn how to swallow on command...how to eat...he gave us a referral and also said that if Aiden doesn't respond to that therapy, that he had another physician that he always turns to for the most severe cases. He also told us that we should not consider removing his trache till all of his surgeries were done....jaw joint surgery....cleft palate surgery....thumb surgery....that it wouldn't be good to remove his safe airway because he could still be difficult 'intibation' patient. He took a look at Aiden's mouth with a tongue suppressor (Aiden was NOT happy about that) and ofcourse he still couldn't really see anything, then his ears. No infection. He brought in his collegues and students to see Aiden. He told them "this is the guy who was the hardest tracheostomy case I ever had to do." He shared his before and after pics. Then he said the dreaded words. "I gotta go in and clean his ears."
My stomach DROPPED! They got the 'strap down' thingy and I just held Aiden for dear life. Dr. Hotaling already looked in his ears and that itself frightened Aiden. I gave his some kisses and handed him to Sandy, Aiden's nurse and I just turned away. I cannot handle watching.......they strapped him down...I started to shake.....I started to cry. Hearing Aiden cry...and hearing the cries get louder and more intense is more than I can bear. The absolute terror he feels. I've had my ears cleaned before, it's not bad...but we can't explain that to Aiden. He doesn't know what's happening....what's GOING to happen....will it hurt??? It felt like it took forever. Then he said....okay, next ear. UGHHHHH! He responded in the same pathetic way. Then for THAT ear, they had to use the vaccuum. COME ON! That just sent Aiden into a frenzy. After what seemed like eternity, Aiden was set free and I swooped him up and gave him kisses. Aiden wouldn't stop crying. I was soooo thankful Sandy was there as support. To comfort Aiden during the procedure. Usually Aiden calms down quickly....but this time, it took a while. Dr. Hotaling said the tube that was JUST put in was already out...most likely due to his recent infection, but everything else looked fine. Then he recommended we get his ears pressure tested to make sure the existing tube was working. UGHHH again! This procedure is not painful at all, but after this traumatic event, even simple trache suctioning was terrifying to him. Just when Aiden calmed down, we had to bring him into another room to perform the pressure test. It was quick, but Aiden was still terrified. There was NO calming down from that one. The test went well, the existing tube was worked, and in the ear which the tube was dislodged, the ear drum vibrated well. All good news. We were moved to the waiting room and Aiden still cried. He wanted to fall asleep, to have everyone leave him alone...he eventually fell asleep. Once we talked to Hotaling, made the swallow study appt, we headed home. He didn't even want me to put him into the car seat. Poor Aiden!!!!!!!!! He slept a little in the car. But once we were home, he was ready to play and eat. Aiden ate while Juan and I ran to Walgreens.
After we got home and he was done eating, I put him to sleep. He did NOT fight it. I knew it was late...6pm....but he needed the sleep. He slept till 9pm!! At one point, Juan picked him up and napped with him on the couch. That didn't help!! I thought for SURE Aiden wouldn't go to sleep later that night. Once he woke up, I sat him down for his final dinner of the day. He was sooooo cute! The bizaarre thing was, he sat in that chair for THREE HOURS and played!!! He didn't want to get up. He played with his Elmo computer, he read, he played with crayons. Juan was even able to study in the room. Once 12:30am rolled around, we got Aiden out of the chair and got him ready for bed....and by some miracle, Aiden fell asleep, with no Ipod...no fighting. I couldn't believe it! Although the night was restless and he needed some suctioning, he slept till past 7am. Wow.....today's appt must have WORN HIM OUT!!! I didn't sleep much so today I slept till like 2:15pm. Then my mission was to update my blog. Mission complete! 
One thing Aiden did that Nurse Sandy told us about that We never showed him. WOW! Sandy was so surprised, she almost wanted to get me out of the shower to show me. Heehee. Well , I better get up and shower. Today is Aiden's trache change! GOOD TIMES. Till later...ADIOS!
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