Decisions

This post is for Sunday Scribblings

(this is kind of long, just to warn you)

When my son went in for his year well baby exam, everything went well. Except for one thing. The shape and circumference of my sons head was off the charts, and they wanted me to go to the Kinderklinic (we were in Heidelberg, Germany at the time) to get a few CT's on his head to make sure that things were OK.

The first one was horrible. Matt couldn't come with me, so I was by myself. My son isn't a chubby kid at all. Never had rolls or anything. But these people could not get a vein in him at all. They were really deep. They wanted to put some contrast in him so that they could see the brain fluid and make sure that it was doing what it should. So, after a long horrible time of watching my son scream, and helping him holding him down, they decided to stop, and just do the CT without the contrast fluid.

They gave me the stuff to knock him out, and he went out really fast. The hardest part of all this was that he couldn't eat anything. I had to leave the Kinderklinic and walk over to the Kopf Klinic to do the CT. I went to the wrong place (because everyone around me spoke German, and I didn't) and a nice doctor that did speak english got me to the right place.

We did it, I went back to the KinderKlinic and waited for him to wake up. Gave him some juice and animal crackers, and waited for the doctor (who not only spoke english incredibly well, but wasn't bad looking at all!) to come and tell me what the CT showed. It showed that there wasn't anything in his head that was foreign that was making his head the way it was. (when he was born, the back of his head was very pointy, and when you laid him on his back, his head would never just lay there, it rolled to one side. But that doctor told me his head was fine. I have issues with that doctor.....) Thank goodness. So there wasn't any tumor or cancer or anything like that. We went back to our pediatrician. He wanted us to do another one that focused on his skull, to see if it was growing correctly. So, about two months later (it took a while for the German hospital to get their information to our American hospital) Matt and I took Andrew in for another CT. Everything went pretty much the same (except I didn't get lost this time) and of course they couldn't get any contrast in him at all again. We went back, and waited for him to wake up, and for the doctors to tell us what they saw.

They took a long time in coming to talk to us, whereas the time before, once I had given him the film, it was really fast. So, I was very nervous when they came to talk to us.
Diagnosis: Sagittal Craniosynostosis.

That means that the Sagittal suture (the one that goes down the middle of our skull) had prematurely fused together, which was causing his head to grow in an odd shape. The sutures in our skull aren't supposed to be completely fused until our head is done growing, when we're about 12 or so. He came out with it already fused.

I was just sick. These doctors said that he would need surgery to fix it for sure.

I called up the pediatrician to talk to him. He had actually given me his cell phone number. Getting a hold of him through the office wasn't going to be as quick as me calling him this way. He told us that we could have it done at the Kopf Klinic in Heidelberg, and he put an order in for us to go and talk to the Insurance liasons that would call the hospitals and get our appointments for us on the economy. They all spoke German, and they would give us all the paperwork that we would need.

The neurosurgeons that we spoke to, told us that they wouldn't do the surgery, to wait and see if it got better. They didn't speak english very well, and we just didn't feel very comfortable with the possibility of having it done there. Our other option was that the army would fly us to Walter Reed Medical Center and we could talk to the doctors there and then, if we decided to do it, have it done there.

That is what we ended up doing. I had no idea what we would go through before we got back.

We saw Dr. Moores the day after we arrived. (it was superbowl sunday, and people in the next room to us in the hotel kept us up!) We felt REALLY good with him, and he explained everything to us, what he would do, the risks that were involved, and what Andrew would look like when he got out. So, we had to make this decision for our little boy who was not quite 18 months old. I know that other small babies have surgeries much much younger than this, and things go well. But this was classified under elective surgery, and his head would look really strange, but he wouldn't die or have any behavioral issues if we chose not to do it.

We chose to do it. They would make an incision from ear to ear, in a wavy line. They only shaved the hair where they did the incision. Then Dr. Moores would open up the suture, he would take some bone off of the back of Andrews head to take away how much it was sticking out. He would push his brain in just a little bit, and then put a plate on the back of his head that the bone would grow around. The risks were that there is a huge vein that runs up the back of our heads, and if it got pinched, or anything else, Andrew could have a stroke, and all kinds of other things.

It was the longest six or so hours of my life. We sat in the OR waiting room with the others who were waiting for their loved ones to come out. The hardest part was when they took him away. I just sat and cried for a bit after they took him.

They updated us fairly often, and when it was done, Dr. Moores came in and showed us a picture he had taken of what Andrews head looked like when it was done. It was amazing how different his head looked, and how round and almost normal it was. He stayed in the PICU for the first two days or so, and then moved him to the Peds Ward. He had bruises, where the blood had settled, and he had a hard time eating. He had two IV's in, one in his arm, and one in his leg. And a catheter. His head was wrapped up, and it was very tricky to hold him. But he was doing very well.

We ended up staying in the DC area for just over 3 weeks. While he was in the Peds Ward, he got the Rota Virus, which was horrible!!! It has its own scent, and we think he got it from playing with some of the toys that they had. So, after he had gotten out of the hospital, we had to go back in for a few more days because the Rota just dehydrates you. His BM's were completely liquid, and he wouldn't hardly eat a thing. So, another IV. But overall, things went very well. It was hard living in a hotel for that long, and having to take turns staying the night at the hospital when he was in there.

I do not regret the decision that we made. His head, even though still not normal, looks a lot better than it would have. He doesn't have any problems, and as far as I know, doesn't even remember having the surgery. It has been about two and a half years since his surgery. I'm in the process of getting him looked at again, to make sure that things are still doing well, and to find out if any more surgeries are necessary.

It was the hardest thing I have ever had to do so far. During this whole process of finding out what was the problem with his head, Matt went to Iraq for a week to perform for the soldiers during Christmas. So, that was a little rough. Then shortly after Christmas, I found out I was pregnant. I didn't want to be pregnant and having to deal with Andrews surgery. Luckily for me, I haven't gotten sick either time. In fact, I have very uneventful pregnancies. So, it was high stress for us, or at least for me. And Matts unit had to fight for him to be able to come with me. We only had orders for Andrew and I to fly. His unit didn't think that was right, so they fought and fought for him to be with me. They knew that he would be useless if he stayed. We were very blessed to have been in that unit as they were very aware and very willing to make things happen.

There is a movie that I love: Sliding Doors. If you haven't seen it, it shows the main characters life and the difference it made when she caught the tube, and when she didn't. In one the mother decided to move her child so that the main character made it to the tube, but in the other one, the child wasn't moved. And she didn't make it. And how different her life was just on the fact that she had made or hadn't made it onto the tube.

I often think where I might be if I hadn't decided to go on a mission, to marry my husband, or if we hadn't had kids yet. Or where we would be had we not decided to join the Army. There is no way to know, but I'm not unhappy, and I have very few regrets.

Edited: The last two paragraphs don't seem to flow very well. The subject was Decisions, and I was just continuing with that theme, but I didn't address it very well. Basically, decisions are important, and completely change the direction of our lives, and others lives. So, just pretend that I made it flow a little better. Still working on this writing thing.