Last week we took a road trip to Duke.
Adam in the waiting room.
It was a long day.
We decided to get a second opinion about the untethering surgery that was scheduled for Adam. Our first doctor told us he needed it. At one point told us if he didn't have it his tethering could eventually lead to death. As he grows the tethering will become tighter and tighter around his spine leading to further loss of neurological function and it would eventually effect other organs.
We did not hesitate and scheduled the operation for early August. This gave us some time for another opinion. We found a highly recommended pediatric neurosurgeon at Duke. He said that Adam absolutely needs this surgery and felt it should have been done a long time ago. He felt that some of Adam's loss of nerve function in his legs, bowels and bladder could be a result of being tethered for so long.
This doctor spent about 30 minutes with me explaining everything about the surgery, the recovery, the percentages of possible outcomes, and the risks. He gave me details of what would happen in the OR. We will be in the hospital for one week minimum.
He also told me I should not wait longer than August and told me if I saw any signs of more nerve loss to call them back and they would get him in sooner. So the question becomes do we have the surgery at our local hospital (a very good hospital) or travel 2 1/2 hours to the number one rated children's hospital in the nation.
After talking things over with Greg we have decided on Duke for his surgery. Logistically this will be more difficult with 4 other kiddos at home but we feel it is best for Adam. We will work out the details.
Just yesterday Adam was released from Physical Therapy. He is doing so well with his walker. He is getting faster everyday. It is hard to think that he might lose some of what he has gained. He really has come so far. When we met Adam he had never even had a pair of shoes on his feet or stood on his feet flat. We asked him the other day what his friends in China would say if they could see him walking. He said they would say "What? Adam's walking?" He is so proud of himself.
I will be posting from Duke each day of his surgery if you want to follow along. Of course prayers for an successful surgery and easy recovery are most appreciated.