Cameron has a funny way of telling us what he wants or doesn't want. In fact this past weekend his shunt malfunctioned. Something his Dr's told us wasn't likely to happen for awhile because of the type of shunt he has. But if it's going to happen and be unlikely, then Cameron is the kid it will happen with! So anyway, Thursday I became concerned that his soft spot(which is still open because of the way his bones grow)was a little too full and bulgy to be normal. Sometimes in kids with shunts, their soft spots can become hard and full if they are constipated, or really upset, but when they are still and upright the soft spot should be nice and smooth. His hadn't been for a few days, but I had thought he was constipated, but on Thursday when he had had plenty bowl movements and it was still hard I began to worry. I called our regular pediatrician who agreed to see us Friday morning. I took Cam in and the Dr. was going to press on his shunt valve, and when he does this it should push in and fill up, if it's working properly. He couldn't even get Cam's to push in. So we were told to head to Winston! I called Paul and he came home and we loaded our car with a few suitcases because we were sure we would be there for a while. We got to Winston around 1 pm, and went to the ER. They quickly with a CT scan discovered that Cam's shunt had pulled apart at a point in this neck where the tubing runs. This requires surgery to fix. So Cam was put on the books for Saturday morning surgery.
As a side note let me just mention how difficult this stay in Winston was. We felt like there were nothing but idiots working the day we went in. I'm sure that we were stressed and worried, but the lack of common sense that we felt was going on around us was increasingly upsetting. Maybe it's because we were spoiled back in November for Cams heart surgery in Boston, but some of the things were just unacceptable. OK that is my rant on the anger from the hospital.
Saturday morning came early and at 9 am we were down in the surgery holding room waiting for them to take my baby away for the 8th time. This doesn't get easier, no matter how small or big the surgery, I cry every time. I should be a pro at this, but something about them walking away with him knowing they are about to do brain surgery terrifies me! At about 10 am they took him back and Paul and I went to the waiting room.......to wait. About 45 minutes later the neurosurgeon comes out and tells us they are having a hard time intubating Cam. I told him they had the same difficult time in Boston and needed ENT to come intubate him with a special scope. The neurosurgeon said ENT had been called and were on there way, but that they were going to cancel the shunt revision until they could figure out what was going on with the intubation. This was very frustrating for us to hear, but we were also glad that they were working on getting the problem resolved. About an hour later the ENT finally comes and tells us they were easily able to intubate him and that nothing was wrong and that they were going to call and see if neurosurgery would come back and go ahead with the surgery since he was under. At this point Paul and I were both very frustrated with the events that had gone down, but told them to yes, please proceed with the surgery if he was already under.
They came back shortly and told us that they were able to proceed, and that someone would come and talk to us when the surgery was over. And about 45 minutes after that neurosurgery called on the waiting room phone and told us that all had gone as planned and that they had fixed his shunt and that we could see him in about 30 minutes. We were so relieved and grateful that his surgery was over and successful. But at the same time we were so frustrated and the events that had occurred to get to that point. It was a mix of emotions that I could care less to have to experience again. And as they said it would, 30 minutes later we were with our sweet Cam in the PACU, waiting to go back up to a regular room and begin the recovery process.
So, because of our eventful weekend, and the fact that Cam had anesthesia, we now have to postpone his hand surgery......YET AGAIN. I cannot put into words how I feel. I'm so sick thinking about how much effort I have put into not letting him get sick and keeping him well for this hand surgery to happen....and then this. Something I couldn't prevent, something that had to be fixed with surgery. This is why I started out by saying Cam has a funny way of telling us what he wants, because I'm pretty sure this is his way of telling us that he likes his fingers just the way they are, and he doesn't want surgery to fix them! I on the other hand was so excited about this surgery. So excited to start this process and hopefully have it over before the end of summer. But now it's looking like it may be April or May before we can get back on the books. Literally I am sick with frustration. I am overwhelmed, and I am so, so tired. But I am grateful. I'm grateful that I was able to catch his shunt malfunction before it affected his brain. I'm grateful that he was able to get it fixed and that he is doing ok. I'm grateful that even though we have to put of this hand surgery, one day Cam will have fingers, and we will be able to go to Boston to get them!
So for now we just wait. We wait for Boston to call and tell us when we will be able to come back up, and then we start preparing all over again! Cam is one funny baby I tell ya! Heck maybe now he will be walking all around before the hand surgery. That would be something to be excited about!! BTW...We got home yesterday afternoon from the hospital, and even though Cameron is super cranky and sore, he loves being home, and we love being home with him. His poor little hair was shaved where his incision site was made, so I for see his first hair cut in the near future! I really am grateful for my sweet Cam, and for being able to be the one that goes through all of these things with him. However, it doesn't take the frustrations and anger away that my child is the one that has to go through it. I still struggle when these things happen. I'm not sure if that will ever go away. I hope it does. I hope at some point in this journey I am able to look at these situations and not have that feeling of anger and sadness. But that I can just look at it as our life and what we do. Maybe one day. Maybe not. But for now we are home, Cam is good, and Boston is postponed. Say a prayer that it's able to be quickly rescheduled and that we don't have to wait too, too long for some tiny little fingers!
