Another Shunt Revision

That's right. Hayden just had his 12th trip to the operating room in 22 months. If you're doing the math, that is an average of one surgery every 1.83 months of his life--absolutely heartbreaking! I cannot believe all he's gone through with his amazing attitude and spirit. I really want to express all of my heartbreak and frustration, but no one wants to hear that. Hayden is the one who has to endure all of this (I'm just here for cuddles) and if he can be so positive and happy, I have no right not to be at least as happy.

About 1pm on Wednesday, we followed Hayden to surgery. They actually let one of us go into the operating room with him and stay until he fell asleep. I had never been in the OR before and it was a little weird being in there. Thank goodness they didn't intubate him or shave his head while I was in there. Those are both things that would have been too overwhelming to me. About 1:30, Tony and I headed up to the OR waiting room and checked in. We figured by the time they intubated him, shaved his head, positioned him, and did the other things that needed to be done, surgery wouldn't actually start until 2pm. From past experience we know that this is a 1.5 hour surgery, so we plan to hear that we can see Hayden between 3:30pm and 4:00pm. When 4pm rolls around and there is no update, we are concerned, so Tony checks in with the front desk. They tell him that the "Pediatric Surgeons are closing." Peds surgeons???? Didn't she mean neurosurgeon? What would peds surgeons be doing in Hayden's OR? Two very long hours pass and we finally get to talk to the surgeon who had been called to a trauma, but wanted to tell us why surgery took so much longer than planned. In a slight way, I was relived because I kept imagining my amazing son waking up in a strange place with no familiar voices around--no mom or dad. How scary! I was in a rush to get to him. It seemed like forever, but we got to the recovery room just as he was waking up. His nurse was very nice. She did everything she could to make sure we were comfortable while we waited for a room. We greatly appreciated that she made sure that we stopped in radiology for his shunt series BEFORE getting all settled in his new room. She even took us herself. Thank goodness we liked her. We had to wait 2 hours in the OR for a new room. None of us understood the need for a new room when we were leaving the next day. Why go to the expense of preparing a new room when were were leaving in less than 24 hours and we hadn't even been in the first room for 24 hours? Seems like a huge waste of resources.

Apparently, scar tissue in Hayden's belly from previous surgeries had blocked the shunt so it couldn't drain. They had a hard time finding a good place to drain the shunt since he has so much scar tissue. That is why the pediatric surgeons were called in. Dr. Lindley said that they found a nice place for it to drain. Coincidentally, it is right next to the incision from Hayden's first shunt. Since only the distal end was blocked, they only replaced the valve and the tubing that goes into his belly. They left the reservoir in the ventricle on the top part of his head. Unsure why, but they used a different type of valve and it is much larger than the old one. CONCERN: If there was already an issue with scar tissue blocking the shunt, adding a new incision for the new tubing is going to increase the amount of scar tissue that could lead to a future occlusion. Please, God, don't tell me my sweet boy is going to have to have multiple shunt revisions for reasons other than the planned shunt revisions he will have as he gets older and taller. We got to our new room and discovered we had a roommate. Why would they put a 1.5 year old who just had brain surgery, and was likely to be up all night crying, with a freshman in high school? Luckily, Hayden didn't make a peep all night. I wish I had pictures of Hayden's head right after surgery. I joked with him that he went a little too all out for Easter. The night before sugery when he had his shunt tapped, the neurosurgeon sterilized the area with a blue solution. In surgery, they used a rust colored solution. Until he had a sponge bath the morning after surgery, I got to call him my "little Easter egg." Some people don't appreciate my humor in these situations, but it's how I cope with all of the stress. We derserve to have fun like any other family. Sometimes, we just have to find any little thing we can to smile about. Luckily, I think most people are relieved that I try to find something to joke about instead of falling to pieces, which would probably be a lot easier.

The next morning Dr. Lindley, the residents, and some students all came in. Dr. Lindley said all went well with the surgery, but pharmacy messed up on the dose of antibiotic he got in the OR and he was overdosed. As long as his blood came back ok today, then we could go home. We would need to have labs drawn at home the following week and have the hospital fax the results back to IA City. His potassium came back a little low, so he received a dose of that. Now, we just had to wait for daddy to come and get us.

Hayden handled his feeds well and didn't vomit or retch. How wonderful to have that problem solved! Before daddy could get to us, we were kicked out of our room. I reminded them that Hayden is normally in isolation this time of year and we can't just sit out in the common areas of the hospital and wait for daddy. This is even more important since his immune system is lowered from being on such a high dose of steroids. We know another family that was in the hospital at the same time. I had been wanting to visit them, but couldn't since I couldn't leave Hayden, I hadn't been able to check in with them yet. I took our eviction as the perfect chance. It was great chatting with them for a while and Tony met us in there room.

Melissa is a great person and wonderful to talk to. There are so few people who understand what it is truly like to raise a multiply disabled child. I enjoy visiting with her. Her son is such a riot and so fun to talk to. There is no way not to have a big smile on your face when spending time with him. I only pray that Hayden will be able to talk to us like that someday. It would be so horrible to never be able to have a conversation with your child. We spent a short time with them when we realized that we needed to get going if I was going to have a chance to see Nicholas before my mom had him in bed. When I am away from him, I realize just how much I rely on him to keep my spirits lifted. He is always coming up with some new antic to keep us on our toes and a smile in our hearts. There is nothing that a smile, laugh, or hug of Nick's can't make better. How did I get blessed with such perfect boys?