Best Possible Outcome. That’s how I feel about this last surgery.
This surgery went so much better than we ever dreamed! First of all, Apollo wasn’t worried. It quickly became obvious that while he knows he has had heart surgery, he no longer remembers it. When he had his second double aortic arch repair in 2012, he still remembered the first one (eight months earlier) with fear. This time, for Apollo, it was just another visit to Seattle Children’s Hospital, only this time he was just a bit hungrier. And even that wasn’t too bad, since I woke up and gave him extra formula in his g-tube at 2 am.A few weeks ago the Childlife Specialist at Seattle Children’s gave us a book about having surgery, to help prepare Apollo (and Tucker). Apollo had every step memorized and he wasn’t going to skip a single one. The books said, “you may ride in a wagon or wheelchair” and darn it, he was going to ride in a wheelchair! Next was check-in, his hospital bracelet and…
…video games in the waiting room. Thank goodness, no one was using this Wii when we arrived! It was so cute to watch him formulate and accomplish each step on his mental list. Seattle Children’s is his second home and his doctors are familiar, so this trip was lacking in much of the anxiety we were anticipating.
Apollo has gained quite a reputation at Children’s for his grumpy wake-up from anesthesia. They allowed me to accompany Apollo right into the OR. I put on a “bunny suit” and carried him. As the doors swung open I was immediately hit by a blast of cool air. The room was larger than I expected and filled with six or seven medical personnel already all busy with prep. I recognized a few people; Dr. P, his ENT, the anesthesiologist. I was instructed to sit Apollo on the operating table. The anesthesiologist asked what “flavor” he wanted for his mask. Apollo chose orange. They were very patient and gentle as they held the mask an inch or so from Apollo’s face. The anesthesiologist quietly explained to me what to expect: strange eye movements, twitching…As Apollo became more and more drugged, they moved the mask closer until it touched his face, then gently lay him on his back. He didn’t like this, immediately feeling vulnerable. As this point they were holding the mask over his face. He was disoriented and scared. He kept crying “Mama”. I hovered over his face so he could see me, but he didn’t seem to recognize me. He fought and fought, muffled cries filtering out of his mask…then he was asleep.
Dr. P walked me back to the room where Chuck was waiting. He put his arm around me and asked if I was okay. “I’m fine” I answered. “You always seem so calm”. “I always stay calm in the moment” I told him. “Then you lose it later?” “Yes”. Then I was back with Chuck.
There were so many worries and unknowns going into this procedure/surgery….the first thing to be done was the sleep endoscopy/bronchoscopy. Then the general surgeon removed the scar tissue around the g-tube while Dr P came to talk to us. Dr. P said that the problem is “100% his tonsils”. He said as soon as Apollo fell asleep, his tonsils collapsed inward until they were touching and rubbing against each other. The rest of his airway looked NORMAL! Normal, as in, just like your four-year old’s airway. Honestly, I can’t quite get my brain wrapped around this. We are taking this with a grain of salt…We have been told in the past that he was fixed…I can tell you that we are cautiously optimistic.
The scar tissue was removed and Apollo’s tonsils removed. No surpraglottoplasty needed! I mentioned before, Chuck and I weren’t sure what to hope for…that he still had laryngomalacia, so it could be surgically corrected…or that he didn’t have it, so didn’t need the invasive and more risky surgery…but would just the tonsillectomy fix his apnea? According to Dr. P, this surgery is going to me a complete “game changer” for Apollo. He told us, “You had a kid with a very unusual problem [complications after his double aortic arch division] and now you have a kid with a very common problem [apnea caused by large tonsils]”
Because of Apollo’s well documented history of waking up from anesthesia very upset and aggressive, they asked us to wait nearby (instead of in his hospital room). Yep, they had to come get me as soon as he was awake. When I walked in he was being held in his crib by two nurses…they immediately brought a chair and handed him to me. I spent the next several hours in a wooden rocker, alternately wrestling with Apollo, and having my arm go numb when he would fall asleep. It took four doses of morphine (the last dose twice as strong as the first three) to get him calm and pain-free. In the three hours I was in the recovery room with him, I saw many kids come and go and I was the only parent present. He also came out of the OR with an inch long scratch on the side of his face…not really surprising given how he does with anesthetic.
The rest of the day/evening was spent with Apollo watching a Batman LEGO movie over and over, with intermittent doses of drugs. He wouldn’t eat or drink anything. This is where the tube comes in handy, the doctors weren’t worried a bit, since we can bypass his throat entirely and still feed him. At one point when his nurse asked if he had drunk any liquids and Apollo shook his head and I jokingly said, “He hasn’t even had a sip of my coffee”. The nursed laughed and Apollo said, “Well, I do like coffee, just not right now“.
Thank you so much for all of your prayer and comments. Only time will tell how much this will affect (cure?) his apnea. For now, I am happy to have him home, recovering and hopefully on the road to MORE SLEEP!