Recovering over the Weekend

Brandon came home friday from the hospital with very little sleep over 48 hours and was very tired. He could not sleep on the drive home. Once he was home in his own bed he finally let himself get some good sleep. I was almost as bad as him having little sleep myself and Kristin felt the same. Brandon has slept on and off for hours the whole weekend and now is beginning to show signs of feeling better. He is not asking for pain medicine as frequent and has been up long enough to watch his new video "Beatlemania". He has been awake long enough to track Gustov - the hurricane and hear about the changes at the Republican convention. All of great concern to him.

Brandon will be very limited in his mobility for the next month. He cannot get the cast wet, he cannot sweat (therefore no outside) and he cannot put any weight on the foot. This will really limit his activities for a few weeks. Dr Birch and Dr McDreamy fused four bones in Brandon's foot and detached and repaired his main tendon. The foot was put back together with pins, a button at the bottom of the foot and wires sticking out of the cast. If this area gets wet there is a possibility of infection. The cast has been mostly covered. It was open all the way up the leg to allow for swelling. Transfering Brandon has been a little difficult because he now weighs 100 lbs and he must balance on one foot. But so far so good. We will go back to Scottish Rite on the 18th for a cast check and then 2 weeks following for the removal of the cast and molding for a brace under anesthesia. They will place another cast on this foot while the brace is being made. The new cast should be on for about three weeks. If they are able to remove the button when they remove the cast he will be able to walk on the new cast.

I think this is the latest info I have for now. More later.
Leah

Headed back to Austin

We are about to pack up and leave for Austin. Brandon's foot is doing very well. He has not slept very much and we are all thinking when he gets home he will be sleeping better, with a few pain drugs. It was a long night again because Brandon was not able to sleep. See you in Austin
Leah

Long Night and Better Day

Kristin did the night shift with Brandon last night. It was a long night of beeps, nurses, bedding changes and little sleep. She is looking forward to a good night's sleep tonight while I am on night duty. I feel asleep on Patrick's couch last night while watching TV only to wake to "Gabby", Patrick's new dog, licking my face. I did have a great night's sleep. Brandon is doing really good today, even though he did not have a good nights sleep. He is laughing and happy. They just took him off his epidural pain mediciation and we are trying regular pain medication. They will close his cast today. It is open to allow swelling and some oozing. That has seemed to become better overnight. If he can withstand the pain just on the pain medications for another 8 hours, they will remove this epidural. They have also ordered a wheelchair for him. He will use the wheelchair for the next month. We will return in a month to have the pins removed and have a brace placed on the leg. At that point he should be able to walk with the brace. Brandon will only be allowed to place weight on the toe of the foot for the next month. He will need to be transported otherwise in the wheelchair. Brandon is doing so well that the hospital is discussing possible friday or saturday discharge. We will let you know soon. Thanks
Leah

Surgery went Very Well

Just a quick note. Brandon is out of surgery and the surgery went better than expected. Brandon had one tendon causing most of the problems and they were able to repair the tendon and the bone structure at the same time. Because of the extensive surgery he will be in pain and monitored closely for the next few days while we are here. The good news is the surgery is completed and Brandon will not need another major surgery following this surgery. He will need to come back under anesthesia for pin removal and placement of a brace. He is headed for recovery and we will be there for several hours. More later today.

Brandon and Kristin in our Comfy Room

Long Day Checking into the Hospital

Brandon, Kristin and I came to the hospital this morning at 10:00 am for check-in. Brandon had blood work done, pictures taken, consults with anesthesia and the nurses, met with his doctors performing surgery tomorrow, met with PT and OT to discuss post surgery procedures, met with Child Life Specialists to talk about Brandon's interests. It was decided that Brandon will need a wheelchair after surgery for at least 1 month. The surgeons will not know tomorrow exactly which procedures will be performed and how much of the procedures they can do in one surgery. They really won't know until tomorrow. We have checked into our room 332 and are quite comfy. Brandon's surgery will be tomorrow at 8:30 am. The surgery itself will be around 2 hours. He is expected to be out of surgery around 11:00 am and then in recovery for several hours. He also has options for pain management and we are all hoping he can receive an epidural for complete pain management. They will check his scoliosis tomorrow to determine if that is possible.

Brandon is still ready for the surgery. We went to Whole foods tonight a few blocks from the hospital and he picked out his favorite macroni and cheese with hatch chiles and peanut butter and chocolate cookie for his last good meal. He will probably not eat another meal for 1 day.

I bought Brandon a very special present for after surgery and he has been very anxious to open it. Today in the car, he held the present in his arms in hopes we would break down and let him open it, but we resisted and he moved on to the IPod for entertainment and more Beatles.

We will update tomorrow after the surgery. Thanks everyone for your support. Thanks Pati for picking up the chicks.
Leah

Leaving Monday

Scottish Rite contacted us this week to go over our schedule at the hospital. Reminder that Scottish Rite is fully funded by their own organization, grants and fundraising. There are no bills, no insurance to deal with. I have to say, that makes it very pleasant. Everyone at the hospital is really nice, relaxed and takes the time you need to go over the issues you want to discuss. They don't hesitate to runs tests they need to make decisions and they do them all at the site. Brandon will check into the hospital tuesday morning. They will run more tests (blood and x-rays) to prepare for the surgery. We will spend the night there on tuesday and his surgery is scheduled for 5:30 am wednesday August 27th. The surgery is expected to last several hours and he is expected to be in recovery several hours. He will spend 5 more nights in the hosptial to recover from the 1st surgery. And yes this is over a holiday. Kristin, Brandon and I decided to go up to Dallas on Monday late afternoon so we are not so tired wednesday. We are staying at Patrick's house the first night. Noing that Brandon may be bored and stuck in the bed for two weeks, Brandon and I made a run to border's today to find some new Beatles books and I threw in an Elvis book. Hopefully that will help keep him occupied for the two weeks - between the new books and the news CDs. We talked about the fact that Brandon will be in pain, but the hospital will give him medicine to help. We also talked about the fact he may be sleeping alot the first few days. He is still fine with everything so far. Thanks John for the Beatles shirt and poster. He already has the poster on the wall and wearing the shirt. I will update the blog after we check in and get through the tests on tuesday. Please feel free to write messages to Brandon or me. He reads them and gets very excited.
Leah

We have a date

After discussions with the Scottish Rite Hospital today, we now have a date for the surgery. Brandon will have the surgery on August 27, with pre-tests on August 26th. He will stay in the hospital for 5 days after the surgery. I am anticipating that he will be released on August 31st (yes Labor day weekend). I will be staying at the hospital with Brandon. Kristin, Brandon's aide has volunteered to help and is coming with us to Dallas. Brandon's brother Patrick is letting us use his house while he is gone to catch up on a little sleep and do some laundry. Of course the biggest concern is getting Brandon back to Austin after the surgery without damaging his foot. Jimmy (my brother and I) are trying to get the minivan set to allow the foot to be elevated for the ride home. Still working on the concept. Any idea's from you mom's on how to transport easier is appreciated. More later
Leah

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