Truman’s surgery to remove his tonsils and adenoids was today and everything went very well. I was shocked by how quickly the whole process was. We had a few hiccups to start but overall I was really happy with the care we received.
Because of Tru’s muscle weakness issues he has special anesthesia needs. He cannot use the “gas” that makes you fall asleep before the actual anesthesia is put in the IV. The gas can cause issues for certain muscle disorders and lead to some pretty scary complications. So instead of getting to head into surgery, get the gas to go to sleep and then receive his IV he had to get the IV done before he went in. IV’s on little ones are hard especially if you aren’t used to doing them. The folks at Children’s Mercy are typically bing, bang, boom and done. This time not so much. They did give him some medication to relax him first and my high pain tolerance kiddo didn’t even cry through the entire pin cushion process. That IV therapist should thank his lucky starts that he is so weirdly able to handle pain! They also had to prep the room and remove any gas from the lines before he went in so we were running about an hour late after everything.
We didn’t get to walk him back which was very hard. I had to hand him over to the nurse which just killed me. I felt like my whole world just left my arms. It literally felt like my heart was ripped out of my chest. He just looked at me and smiled and I sent him off.
The actually surgery only took about 30 minutes. I was so amazed. When I got my tonsils out in 4th grade it was major surgery. I spent 2 nights in the hospital and I remember it being this crazy long procedure and recovery. His ENT came out and told us it went very smooth. He commented about the size—BIG. He is positive that he is going to be able to breathe much better. Our hope is that with better breathing he will sleep better, grow more and become stronger.
The experience of seeing him in the Recovery Room was horrific. NOTHING like what we experienced for his muscle biopsy. When we came back then he was a little fussy but comfortable. Once he was in my arms he calmed down immediately and I gave him a bottle and he was a happy camper. Today when I walked in the room a nurse was holding my thrashing baby who was screaming and had blood dripping down his face. He was not really awake and he was scared and in pain. The blood turned out to be normal secretions but he just had a lot more than normal. He was having a really hard time breathing through them and he sounded like he was drowning. On top of the screams he was unable to control his body and his head was flying all over the place. I grabbed him out of the nurses arms and he calmed down a bit but he was still very confused and was really struggling to breathe. They told me he was “much better” than when he first came out. WTF? THIS was better?? I cannot imagine what he was like now that he was “better.”
They added some more pain meds and used a suction tube to help him. I crawled onto the bed and held him on my chest just like we did every night when he was a baby. He settled down and slept. We had to add some oxygen to help him keep his O2 stats. As long as he had the meds and we could keep him suctioned he was OK. After about 45 minutes things got much better. The doctor came in and gave us the all clear. We removed the oxygen and checked his stats and then we were out the door. I was simple amazed that I was taking my son home only a few hours after surgery.
They sent us home with pain meds and Tru was OK at first. He was sleepy and a bit whiney. Then it was time to give him a dose of meds and it was horrible. He screamed and grabbed at his mouth trying to get it out. Most of it dripped down his chin and the rest was on daddy. I had no idea how much actually went in but it wasn’t enough to keep the pain down. He was super fussy and couldn’t get comfortable. He wouldn’t drink. Finally he slept and when he woke up it was time for another dose. Same situation. This time I think even less actually got in his body. I called the nurse and had them order the same meds he took after his muscle biopsy. When he took that dose it went right in and everything was just great. Within a few minutes he was smiling, drinking and even stood up and played on the floor for a while. He then went into a perfect comfortable sleep. Whew. What a difference.
He is almost ready for another dose and hopefully this one will be the same. The next few nights we will need to wake up everything 3-4 hours to give him his pain meds and get him to drink. If his throat gets dry it makes the pain worse and can cause complications. I pray that he spends the next few days sleeping and just letting himself heal. Hopefully after a few weeks we will start to really see some improvement.
I had a dream the other night that it was the day of Truman’s surgery and I handed him to the nurse. A little while later the doctor came out and told us that it went well and he was doing amazing. He couldn’t wait for us to see him. When I got back into the room he stood up by himself, walked over to me and said “hi mommy!” I hope that it is a sign that this surgery was the right decision and will help him accomplish all of these milestones.
Thank you to everyone who sent out prayers or good juju. It was felt and it was powerful. Keep us in your thoughts a few more days while he heals.
It is done. Thank God.