Jack made it through the surgery just perfectly and is now home sleeping in his bed!!
We arrived at NYU at 5:45 in the morning on Tuesday. Nervous and tired, we did all the pre-op stuff and talked to the nurses and Doctors who were going to be taking care of Jack. His surgery was scheduled for 7:30 in the morning and they took him at about 8. I was nominated to go with Jack into the OR, so I could be there when he went to sleep. They gave him something about 15 minutes before that so he would be calm and wouldn't remember anything. I am not sure how well that worked, but he went with me willingly even with the jumpsuit, booties and cap on. It wasn't until I put the mask on that he got mad and kept pulling it off.
The surgery went really fast. They said it takes about 1-2 hours just to get everything ready, and that the actual surgery would take about 1-2 hours. Dr. Wisoff came out to us at about 10:40, ok it was 10:38 to be exact (why I remember I really don't know). He said that everything went really well and his assistant was putting the last stitch in when he came to talk to us. They did the craniotomy and the fenestration and he said that when he went into the back of his skull that the cyst had shifted and was deteriorating the bone that covers some of his nerves. Mainly the one that controls the whole right side of his face. It was totally exposed which he said is ok, he had just never seen it before, and when they were irrigating it Jack's heart rate started to drop so they had to wait in between. I guess it is a good thing the surgery happened quickly and Jack didn't have any problem with that nerve!
We went up to the PICU on the 9th floor and waited for Jack to get up there and them to come out and get us. We were a bundle of nerves. I think we had to wait 15 minutes but it felt like an hour!! Terry and I went in and saw Jack, which was very scary and emotional for us. He was really upset and had a HUGE turban of gauze on his head. He was really out of it and wasn't opening his eyes. I think it took us a couple of hours just to calm him down when he finally fell asleep on Aunt Ing!!!
His head was VERY heavy and it was tiring trying to hold him even asleep. We were happy to have 3 sets of hands to pass him around. The PICU was crazy with 3 other beds in the room and monitors were beeping all night long. Jack was doing pretty good. In the beginning hours in the PICU he was getting really red and hot, with a rash all over his body, and then suddenly it would go away. It seemed like at the same time he would get really agitated and start thrashing around and then his heart rate would jump to about 220 bpm. We still don't know what this was a reaction from, but one nurse said probably something they gave him in surgery. I slept in the PICU with Jack the first night. Well, I wouldn't call it sleeping. We dozed here and there, but all the noise from the other patients didn't really make it good for sleeping. That and Jack waking up every hour or two.
They moved us on Wednesday into the Pediatric unit and out of PICU. We were thrilled to say the least!! Our nurse was terrible in the PICU and we were sure there had to be someone better in the other side. Right after we were moved they took Jack down for his MRI. Everything looked great on the scan, they said that the fluid was flowing where it should and that the cyst had even gone down a little in size. GREAT NEWS!!
That night I stayed with Jack again and we had NO roomates. Finally some decent sleep. We passed out around 8:30, and had to get up about 10 for more meds. I also had to keep him up til 11 for another dose of a different medication. After you have brain surgery they put you on anti-seizure medication, it makes you very irritable (and Jack got that side affect for sure). He has to take it every 12 hours. He is also on some steroids(for swelling), tylenol with codeine for pain, and pepcid for his tummy. We both felt so much better after getting a little sleep. Jack would have some wakeful periods where he was really alert and watching his favorite show, Mickey Mouse Clubhouse.
This morning we met with the surgeon again and they told us we could go home today!!! YIPPEEEE, the best news!! They took off Jack's turban and he was really happy. He finally could play with his hair, and stop trying to rip it off every 5 minutes. It must have been so itchy and sweaty.
The incision goes from the very top of his ear in a zigzag all the way up to the top of his head on the right side. It really is amazing what a great job they did. They barely cut any hair at all and they did a zigzag so that his hair will lay down right over the incision and you won't be able to notice it. Even in the picture it is hard to see.
We couldn't pack up and get out of there fast enough! He does have swelling that gets better and worse depending on where he is laying and he also has a black eye on the side where they did the surgery. Before we left, the floor pediatrician was doing rounds with some interns and stopped in to ask us some questions about Jack and the cyst. I thought it was good since they said they were just wanting to learn more about these cysts and what types of symptoms he had that led us to get a MRI.
Jack will continue with his therapy starting back again this Monday! For now he has no limitations, although he is a little blurry and not steady on his feet. We will go back in for a few more MRI's but I think we are out of the woods now!
Thank you to everyone for all of your blessings and for thinking of us. All of that positive energy really made this all so successful!
Saying goodnight for now with a smile from my son Jack on our way home from the hospital today!!