Shriners

Yesterday we had our appointment at the Shriners hospital in Tampa. I wasn't really nervous about the appointment, but I was worried about how Eli would do in the car ride to Tampa. Of course it was much easier to have Jered with us, because he drove and I sat in the back seat with Eli. He did really great and had one bottle and slept most of the way.

When we got to Shriners I immediately felt really sad. You see all of these children with severe orthopedic problems and I felt so terrible for them and that Eli was at the same hospital as they were. Our appointment was at 9:30 a.m. and we were called back shortly after that. We were triaged first and found out that Eli weighed 15 lbs 11oz and was 25 inches long. We then went to our room and saw the nurse and then had x-rays done. While the x-rays were taken Jered and an technician had to hold Eli's legs down while I held his upper body. Of course he cried and I almost started to cry too. I knew he wasn't in pain, just not happy about the whole thing.

Then we saw a nurse practitioner who examined Eli. She came back moments later with Dr. Mason. Dr. Mason was extremely personable but right off the bat stated that he did not have much experience with FH and would not be the one to treat Eli - say what? We drove all the way down here and this wouldn't be our doctor? He was very kind and told us that Dr. Grogin would be the doctor that would treat Eli and he would try to get him to come in and meet us. In the meantime, we talked with Dr. Mason and at first we got the impression that he was recommending lengthening for Eli. We later discovered that he just likes to present all options for the parents and I really appreciate that. I had really been hoping to get the full explanation on what would need to be done if we did not choose to amputate. Not that I ever felt like amputation was not the best option, but I just want the other side of the story to remove any uncertainty that I had. Dr. Mason said that Eli would most likely require lengthening to his femur and his tibia and this would probably have to be done twice during his childhood. He said that each lengthening procedure could take up to a year...a year! He said that Eli would have to be fitted with a brace and a shoe lift because his foot would not be fused to his tibia to create an ankle until he was older. In the meantime, his foot might still turn out to the side, even with a brace.

Dr. Mason, like Dr. Woo, explained that with the complete absence of a fibula Eli does not have an ankle. The tibia and the fibula form the two sides of the ankle, and so without the fibula on one side the ankle is unstable and the foot would turn out to the side. Its likely that there are other things missing like ligaments and muscles, but those do not show up on x-rays of course. He also said that there could be bones missing in the foot, or other problems with the foot but those would not be evident until he is older. The most convincing statement was that we could do the lengthening, try and save the foot, and then at the end he could still need the amputation.

We then were able to meet with Dr. Grogin and we liked him. He said he sees FH patients all the time and does Symes amputations frequently. He likes to do the amputation when babies are 9 mths old. He said Eli would be in the hospital for 2 nights and then he would have a follow up appointment 2 weeks later. Then 6 weeks after the surgery he would be fitted for his prosthesis and it would take 6 weeks for the prosthesis to be made. So if all went as planned, Eli would have his prosthesis 3 mths after his amputation.

We then met with Danny, the Associate Director of the Prosthetics and Orthotics department. He was by far the best person we met at Shriners - he was upbeat and positive and really had great energy. He brought in a prosthetic foot to show us. I loved seeing how the foot could move and it just seems so obvious how Eli would have more mobility with that then if we tried to save his little foot by fusing it to his tibia. Danny was really encouraging and kept telling us that Eli will be able to do anything he wants with his prosthesis. As we were leaving he asked me if he had any thing else wrong with him besides his FH, when I said "no" he looked and me and said, "oh, he will be just fine." I got the impression that he sees kids with such significant problems that FH of the right leg is super minor in his opinion.

As we were leaving Shriners my attitude shifted and I did feel like our situation with Eli's FH was so minimal. When you see all of these children in wheelchairs and with problems that our obviously more serious that FH, it makes you feel so blessed. I told Jered that if God had told me when I was pregnant that my baby was going to be born with some sort of "problem" and I could pick what I wanted it to be, hands down I would pick FH. It might seem weird, but when you think of all the horrible things that some children have to deal with, FH seems really minor.

So now we have to decide. All day yesterday Jered and kept going back and forth trying to decide if we should have Eli's surgery at Shriners in Tampa or here in Gainesville. It really comes down to two things: Shriners is free and it is in Tampa. So what is more important, to have all of Eli's care taken care of right here in Gainesville or having it free of charge? At this point we are leaning towards having everything taken care of here in Gainesville with Dr. Woo. We honestly can't afford the medical expenses, but we can't make a decision about our son's medical care based on the cost. Even though we do really like Shriners, having it here just feels more comfortable. I don't know...I guess we still have some time to decide.