Surgery

I don't think that people really realize how much family members change over a period of time since you are with them all of the time.

Sam is now five years old. Over the past four years we have seen him just grow, both physically and mentally. We know that is what is supposed to happen but to see four years pass by, while a child of yours is growing, that is an amazing experience for us.

We monitored Sam's NF over the years and like most of the research and care guides we have read, watching and monitoring is about the best thing to do for someone of Sam's age. It paid off for Sam a month ago.

During a scheduled visit to UAB one of the team doctors suggested that Sam have a surgery to help debulk the plexiform over his right orbit. The procedure seemed kind of extensive so of course we wanted a second opinion (always get a second opinion). The doctor at UAB gave us a name of a doctor at the Mayo Clinic in Jacksonville. We all know how good of care people receive there, but it is out of network for our insurance so we are talking some serious money out of our pockets.

We turned instead, back to a doctor who saw Sam when he was less than one year old. Dr. Tse at Bascom-Palmer saw Sam and agreed on two, or maybe three, surgeries. The first one would be to debulk the tumor above his orbit. He would make an incision along the crease/fold of Sam's eyelid, retract the skin and then start the debulking.

Plexiformneurofibromas bleed a lot. So as it was explained to us, Dr. Tse would have to cut the tumor, the cauterize it, then cut, the cauterize, and so on.

On May 16th, 2009 Sam had this surgery. This was his second major surgery (the first being a surgery to relieve the pressure in his eye). Sam was in the operating room for just over 2 1/2 hours and came out with a patch over his eye and a smile. WOW. We were all there waiting for him to come out.

Before Sam came out Dr. Tse came out to talk with us and he showed us digital pictures that he took during and after the procedure. We saw the mass he cut out. It was huge! We also saw pictures of Sam during the operation; that was a little too much for Shelley. I was amazed to see the photos. Dr. Tse told us about the procedure and how well Sam did.

After Sam recovered, we were released from the hospital. This was in out-patient procedure and we were back in Hobe Sound by 5:00pm. Wow. 12 hours and what a day.

The next morning we were allowed to take off the bandages. Sam looked like he lost a serious boxing match. His eye area was very swollen and purple.

Over the next few weeks we were amazed. The majority of the swelling has gone away and Sam's eyelid is really opening up. I think that everyday it gets better. The first picture in this post was taken earlier this year. The second picture was taken last week. I can tell you now, it looks even better. The healing is just about over from this surgery. Next week Sam heads back down to see Dr. Tse for a follow up visit. I'll put money on it that Dr. Tse will want to schedule the next surgery (to remove some of the eyelid to tighten it up a bit) sooner than later.

Any takers?