Wow. What a ride we have been on. My little man is such a fighter and he has proven it over and over again this past week.
As I wrote about before Truman needed surgery to repair the cleft in his laryex and to place tubes in his ears. We scheduled the surgery with his amazing ENT at Children's Mercy, Dr. Latz for last Wednesday. The plan was fairly straight forward. He would be in surgery for about an hour to get the two things done and then spend the night to monitor his pain level before going home early Thursday morning. Not what happened...
We arrived and he was prepped for surgery. He was goofy on Versed and smiling his big 'ol grin when the nurse wheeled him away in a wagon.
Hardest moment. Letting your child go...I can't describe the feeling.
We settled into the waiting room with our laptops and snacks and tried to keep our minds occupied. After about an hour I was called to the desk for a phone call from the doctor. Hmm...that hadn't happend before. I went into a little waiting room and received the call. Apparently during the scope she had found that his (using layman's terms) voicebox was attached to the back of his throat. The attachment caused some of the weird sounds that his sometimes makes when he is breathing as well as snoring, breathing issues, etc. She asked for permission to cut it away from the throat to free it and hopefully help with those issues. I gave my permission and they sent a nurse down for additional signatures. Ah, medical malpractice coverage!
The surgery took longer because of the extra steps and after about an hour and 45 minutes we were told that he was in recovery. The doctor came down and discussed the surgery with us. She said that she had repaired the cleft and that it had gone smoothly. She discussed the additional steps taken to cut away his voicebox and what that could mean for the future. She also told us that she had felt the submucosal cleft and that he did in fact have one. Then she told us about putting the tubes in his ears. She was shocked by the amount of fluid that was present. In fact the fluid was so thick and gooey that she described it as a "rope" that she pulled out of the ear. Ew and ew. She was very positive about the whole surgery and how she thought he would recover. She showed us pictures and told us that she was going to use his case in an upcoming presentation she was giving about the surgery. They took video of the surgery and she is going to give us a copy. Not sure I want to see it...but he might think it is cool when he is older.
As we wrapped up she told us that he was having some issues coming out of the anethesia so recovery was going to be a little longer than we thought. I figured he was having a similiar reaction to his tonsil surgery so I wasn't too worried. He just freaks out a bit coming out of the sleep especially when he is in pain.
So...we waited. And we waited. And we waited. And I started to get scared. I had this feeling in the pit of my stomach that something was really wrong.
Eventually our names were called and I jumped and ran to the information woman. She said he was ready to see us in Reunion Alley so we gathered our stuff and ran to the elevator. My mom and dad were with us at this point and we all stood there waiting impatiently to get our hands on our little man. We were supposed to meet him and walk with him to his room.
As I saw the stretcher pull into the hallway I knew that something was very wrong. His little body was turned to the side and his face was covered with an oxygen mask. His doctor and two nurses were with him. His little body was basically convulsing with every breath. You could hear him breathing from down the hallway. Focused completely on him I got to the side of the stretcher and got my hands on his body. He was pale...so incredibly pale.
The nurses explained that he was having a very difficult time keeping his oxygen stats up. Every time they would try to remove the oxygen he would "fall like a rock." They told us they were taking him to the Pediatric ICU so he could get the extra attention he needed while he recovered. They were smiling but you could see their concern behind their eyes. I smiled and made some joke about him being a fighter. They laughed and told us that he was pretty mad when he would wake up and had taken a few swings at the nurses. Atta boy.
We went to check in at the PICU while they took him to get him set up. We were told it would be about 20-30 minutes. And again we waited. And waited. And waited. And I was freaked out.
Over an hour passed and then another 1/2 hour went by before we were called by the nurse to come back to the room. Once we got there the world stopped for a moment.
My beautiful boy was attached to machines. Wires were everywhere and 3 nurses and a doctor were surrounding his bed. He was so tiny and so pale. So incredibly pale. He had a breathing tube down his nose and the sound of his breathing filled the room. He was very, very still and then I noticed that his arms and legs were restrained to the side of the bed.
The nurses explained that his throat had swelled because of the surgery and that it had made it very difficult for him to breathe. He also was having a hard time keeping his tongue from blocking the back of his throat. The breathing sounds were coming from his throat...not his lungs. I looked at the monitor and his O2 level was at 69. The nurses said he was much better. They had given him a sedative and multiple pain medications to keep him calm. He was wild everytime he woke up and would try and fight off the doctors and nurses. He would flail his little body around and try and pull out the IV's, wires and breathing tube.
I don't know how to describe what he looked like and I don't know how to explain how I was feeling...so I won't. I actually don't want to go back there anyway.
After about 5 hours his breathing started to stabilize. They added a full face mask to help get higher levels of oxygen into him. Eventually I convinced them to let me hold him and immediately he began to do better. His heart rate slowed, his respiration rate went down and his O2 levels were stronger. And he slept peacefully.
When the our nurse transitioned out for the night I overheard her explaining Truman's situation to the new nurse. They were whispering and I assume they didn't think I was listening. She told her that it was a very scary time and that Truman was "touch and go" for awhile at the beginning.
I stopped breathing for a moment when I heard those words.
Nobody wants to think about their child being "touch and go." The reality of everything that had just happened hit me so hard that I could barely contain myself.
We spent the night in the PICU with each hour showing more and more improvement. Eventually they weaned him off the sedatives and then were able to remove the breathing tube. We were moved to a regular room about 6:00 in the morning. We requested a twin bed so I could snuggle up and sleep with him in my arms. I didn't want to let go. The doctors came and said he looked and sounded great and we could head home that afternoon.
It was strange. Within just a few short hours my son went from "touch and go" to out the door. He is such a fighter. He never ceases to amaze me.
He has been doing well recovering from the surgery. We got our first few smiles and then lots of hugs and kisses and I knew we were going to be OK. He has had a lot of pain which is always hard to watch. We go in tomorrow to see his doctor for a recheck and discussion of what comes next. He will have a follow up hearing test and swollow study in the upcoming weeks.
I have never experienced the fear that I did last Wednesday. I thought that I had. We have been through a great deal of fear and anxiety with Truman. But nothing compares to what just happened. And that stays with you. You can move on and laugh and joke. You can experience joy and relief. You can feel all of the everyday emotions and move through the world they way always have...but that fear doesn't go away. It burrows into your soul and sits.
Squeeze your babies and loved ones tight.
Thanks for all of the love, prayers and support. We felt it and I truly believe that it worked. The flood of prayers and good juju filled that hospital room and helped him take every breath.