Sunday, August 17, 2008

Short time to get ready

Brandon and I went to Dallas late last week to discuss possible surgery on his foot. Brandon has a left cavovarus foot condition (see web link). Bascially the foot began turning inward, with a very high arch about 2 years ago after a break in the left foot. Brandon had seen several physicians in Austin concerning the foot with varying opinions on treatment ranging from doing nothing to very major surgery on both feet and hamstrings. I decided I wanted a second opinion and with the help of his PCP he received a referral to Scottish Rite Hospital in Dallas. They see many patients with this condition. Our first visit was November 2007. Brandon visits the Blue Ortho team at Scottish Rite headed by Dr Birch. Dr Birch said that Brandon's condition did require surgery for repair and that no orthotic or no therapy would correct the problem. However, he was concerned because this condition often is related to other underlying conditions, such as brain damage or more problems with Brandon's spine (Brandon has scoliosis). We begin a long process of trying to find the underlying cause of the foot condition. Brandon had an MRI of the brain and spine performed. There were no significant findings. We went on to have nerve conduction tests which were fine. At this point we decided to run a series of chromosome tests. One of the tests indicated a problem concerning the addition of 7Q36.3 chromosome. As we continued more tests (heart, bone density, more chromosonal tests,etc) we really only found the chromosome abnormality. Because there is so little information on this chromosome addition it has become clear that at this point we don't know the reason for the foot ailment and really are not sure about Brandon's overall diagnosis which we believed to be cerebral palsy. This summer Brandon went to Scottish Rite's movement lab and it was determined that the foot needed surgery. At this last visit it was decided to move forward as soon as possible. The surgery is now scheduled for the week of August 25. I will update you on the exact date/times.

The surgery is very complicated and will require surgery in several steps. He will definately need 2 surgeries and possibly three to correct the foot problem. The first surgery will cut his main muscle and break some of the bones to rebuild the foot. We will be in the hospital 5 days. He will not be able to put any pressure on the foot for at least 2 weeks to 1 month. At two weeks, we will return to have a tight cast put on the foot under anesthesia. At around 1 month Brandon will be able to bear weight on the foot. In October we will return for the second surgery to connect the nerves and to do any other repair they were unable to do in the first surgery. The process will start all over again. We are hoping to have all the surgeries completed by Jan.

Brandon is really handling this well. He has been in the hospital so many times that he is not stressed. I think the only thing he is worried about is how he will listen to all his Beatles he has marked on his computer when he returns, when his computer station is upstairs. We are working to try and fugure out how he can be in bed and access his favorite sites. We updated his IPOD this morning with more Beatles, Elvis and Elton John (my idea for a little Beatles break) and he can listen to them in the hospital. In true teenager form, he is also excited about missing the first week of school (sorry Donna). Oh for those of you that have not seen Brandon's videos (about the beatles) I added a link.

This week we will be preparing for medical equipment and nursing support for when we return and trying to get the rest of the details concerning our stay. I will update this blog as we progress. I am going to add a link to join this blog so you can receive a notice when I update. Thanks everyone for all your support and patience for the last very long year.
Leah

4 comments:

LissaHat said...

Great idea Leah! Keep me posted on all of this. My thoughts, my prayers, my songs are with you guys. And love! My love goes to you!
Lissa

Peggylou719 said...

Very well written Leah! I will be around to help you and Brandon as much as possible.

Anonymous said...

Hi Leah,
Thanks so much for including me in on Brandon's situation. I've missed seeing you guys this summer and have been wondering what my sweet neighbors have been up to! Now I know! Was Brandon able to attend the stunt/movie-making camp again this summer despite his foot troubles? We have been traveling alot this summer and didn't get to attend again this year! I hope that Brandon comes out of this surgery with 100% success. You all are in our prayers! Call me if I can help you all with anything. I'm just around the corner!
All the best,
Cheryl Duncan

Leah said...

Thanks Cheryl, Lissa, Peggy, Clem and Brett. Brandon was not able to attend the Stunt Ranch this year. We could not work around some of his doctor's appointment. He was able to do horseback riding which he loves and camp wired. He is hoping to participate next year.