Riley is having his Lefort I procedure redone as the one he had last June, where they cut off his top jaw, splinted it, then screwed a halo in his head to hold the whole thing in place so we could screw his jaw out a bit at a time went awry. He had an accident where he fell and the screws on the left side of his skull went thru, and he had to have emergency surgery to take the halo off. They put temporary plates in his jaw to temporarily hold it in place until we had this redo.
This time they cut off the top jaw again, put a splint in and grafted cadaver bone into either side of the jaw, then wired him shut. This surgery took place on January fourth and lasted about 6 hours. I got pretty anxious because we were told they took him to ICU, but had not called us into the recovery room like they normally do, and it was taking a long time to call us up to see him in the ICU. When we got up there around 8:00 pm, the anesthesiologist came out and told me that he was not sure if they wanted me to see him yet as they were still working on getting him stable. That is such a hard thing for a momma to hear, even if your child is officially an adult now. He just turned 18 on August 29, but he is still my boy.
When I first walked in there my stomach dropped a bit. The ICU is an overwhelming place. There were lines and breathing tubes and machines everywhere. Riley's poor face was bloody and they were trying to get his blood pressure down. They had a nurse that had a desk at the bottom of his bed that had a big trauma chart that was marked constantly. They took very good care of him. It was a hard night, because he was in pain, but asleep, and blood kept coming out of his mouth and nose. I would softly wipe it with a washcloth and lightly rub his arms and his head. I finally fell asleep on the little couch in his room about 4 am...
At about 6:30 am I heard a bunch of alarms and a code blue called. I sat up and nine people were around Riley's bed. They were yelling at each other and it was calm and hurried chaos. It registered in my foggy mind that Riley was throwing up blood. The problem was that his mouth was wired shut, so the blood was being aspirated into his lungs. The nasal-gastric tube they had in his stomach...hooked to a vacuum to suction out all the blood in his stomach had clogged in the night, so all the blood had pooled in his stomach:( It was horrible. The respiratory team came running down the hall. I grabbed Riley's hand and he held it hard while his other hand was pounding on his chest to let them know that he could not breathe. His eyes and the look of fear freaked me out and I felt dizzy, like I was going to pass out. They made me leave the room at that time, and the respiratory therapists suctioned his lungs out and took about 45 minutes getting him settled and breathing and stable again.
Riley had some very sore days. This is such a painful surgery. He usually likes to go on lots of walks in the wheelchair and even go down and play the piano, but he did not feel up to it. It is hard to get your sleep in a children's hospital, but I did well, considering. I also pre made a bunch of fresh fruit, vegie and whey protein shakes and took them up with me along with apples and oranges, a big bag of carrots, snow peas and red peppers. In the ICU they did not have a big freezer like the regular floors, so I actually took my shakes outside and buried them in some snow in the children's garden and put a note on them stating "Please dont throw these away, my son is in the hospital...if you need me to cone and get them, call (cell )". They were safe until I got to a regular room with him:)
I also took advantage of the 4 floors of stairs and long halls and did my walking when Riley's dad came to see him, or when he was asleep...for the first time, I didn't make any excuses. I didn't say "I'm too stressed" or "It's too hard to eat well here". Score 50 points for Kath!
A few days after we brought Riley home, he got sick and threw up, so the wired had to be cut at home. (They sent us home with special wire cutters). It was VERY stormy that night, but we had to take him back up to the hospital to the Emergency room to do a temporary fix on the mouth until that tuesday when the Dr. could wire him back up.
Poor Riley is so sore, but this is the last of his major surgeries...we hope. The whole family has chipped in and haven taken days to stay with him. I am lucky to have kids so willing to help each other. I am also lucky to have a husband that was willing to drive me and Riley up in the storm because he knows of my anxiety of driving in the snow and with Riley in such pain.
I have not let this slow me down. I am making healthy choices because I want to be healthy to be here for my family.