Tonsil and Adenoid Surgery

Yesterday we went to Ochsner for Tucker's surgeries. He got his tonsils and adenoids removed, as well as a bronchoscopy to see his airway, and he had his left ear tube replaced. A few months ago, Tucker had bad sleep study results. The results showed that he had very bad sleep apnea, meaning that he is not getting good sleep at night. He actually kept his oxygen up at night, so the fear is not that his lungs aren't getting enough oxygen (just like Tuck). Kids with sleep apnea have attention problems, hyperactivity issues, and learning problems. Our brains need to cycle through certain sleep patterns to help our memories and to give the brain and other organs proper rest. Tucker spends too long in nonRem sleep, meaning that his brain is not resting enough, even though his other organs are getting enough rest. So the first step in treatment is to remove tonsils and adenoids, especially if they seem large. Tucker's tonsils have always been large, but the ENT did not want to remove them since the risk of putting Tucker under anesthesia and having a breathing tube down his throat could be worse than the risk of having large tonsils. The ENT changed her mind when she saw these results, so we scheduled the T&A procedure. The pulmonologist and ENT noticed that Tucker was breathing very loudly and he was "pulling" around his neck when he breathed, similar to a child's chest pulling when they have asthma or pneumonia. The ENT put Tucker on steroids and then said she would look down into his trachea to see if he had any scar tissue or problems that she could fix. She arranged for Tucker to stay overnight on the general Peds floor overnight for observation. Tucker was very excited yesterday morning to be going to the doctor! We told him we were going to see his ENT, and we think he has a crush on her:) He ran to the car, and smiled the whole way there. He was happy in the waiting room, and even in the exam room before surgery. I was a little worried, to be honest, because he was a little too excited for a surgery day! After they gave him his Versed to make him a little tired and woozy, they rolled his bed away from Chris and me, and out to the OR. He looked up and burst out crying. We told him we would be there when he woke up, but he kept crying and reaching for us. I felt bad, like he did not realize what was happening until that moment, even though we told him all about it. My mom and dad were in the waiting room, as well as Mrs. Mia, Jackie, Alexis, Sarah, and Brad. We waited for about an hour and a half, then they called Chris and me back to recovery. They said it would be at least an hour before anyone else could see him, and we sat and rocked him. He was pretty fussy, so Chris had to hold him and comfort him. He would have pushed me out of the chair! He is very strong, especially when he is mad. The surgery went well.....however...there was no scar tissue or any problems with Tucker's airway. That sounds like good news, but it means that there is no easy fix to his breathing problems. The doctor said the steroids he took last week seem to have really helped his stridor (airway irritation that led to breathing problems), although I had not really noticed an improvement. She prescribed two doses of IV steroids last night to help him as well. She said his airway is just skinnier than it should be, and floppier than it should be, but it is not in a place where she can operate. He just has to grow out of the tracheomalacia, which is what we have been told since he was 4 months old. Until he grows out of that, he may have to take steroids every time he gets a cold so that his airway does not get too inflamed. The best case scenario is that removing the tonsils and adenoids fixed the sleep apnea, and the floppy airway will cause no problems. We will let Tucker recover for a few weeks, then we see the pulmonologist May 10th. He will likely order another sleep study, but it could take months to get into the sleep lab. For those of you who don't know, Tucker HATES sleep studies, as does anyone who has ever been through one! So once those results come in, if Tucker still has sleep apnea, he may have to sleep with a CPAP mask at night. The absolute worst case scenario is that his floppy airway is causing the apnea, and that his breathing problems will keep him from growing and learning, making the ENT really consider putting his trach back in. She said that she does not want to do that at all! Tucker has really blossomed since he has gotten his trach out. He is still years behind other kids his age, but every day he is showing us how much he knows and has been waiting to share with us. Getting his trach out has helped so many areas of his development, and we of course want to continue that. So we have several months ahead of us to.....wait! That is what we do best, after all! Last night was pretty rough! Tucker has had several surgeries and bloodwork lately, but he has not spent the night in a hospital since November. He was not happy when we loaded up his stroller and ended up in a hospital room, not at the car! He cried in the playroom, he cried on his wagon ride down the hall, and he screamed everytime anyone in scrubs came into our room, even when they did not touch him! He pulled out his IV at some point, so last night they had to put in a second IV. Tucker usually charms his nurses, he is such a flirt! Yesterday he did not do that at all, he was such a crab, poor baby. Back in the NICU, Tucker was almost always a crab. By the time we roomed in with him, I had resigned myself to the fact that I had the fussiest baby on earth, and I loved him anyway! It was so nice when we took him home, and he pretty much changed over night. He was the happiest little baby at home. Of course he was on Valium and other "happy" drugs, but he was on those in the NICU as well, and they did not work. The first few times we went into the hospital for testing, my mean Tucker came back, but he would go back to normal at home. He hadn't shown us this personality in quite some time, though, and I had kind of forgotten about it. Today he was in a better mood, but he was still not himself, even on the car ride home. When we pulled into the driveway, he screamed "out out", and once he and Chris walked in the door, Chris said "yay" and Tucker repeated "yay!" It was so cute. Tucker has been in pain today, so we are giving his meds on schedule, but he is still much sweeter than last night!