In Recovery

It was a long night of strong pain medicine and a little sleep. But much improved over the last surgery. Brandon did actually sleep last night and his pain appears to be manageable this year. He is on regular pain medicine but we have moved into regular pain management.

Dr Birch said this surgery is 1/10th the last surgery. Brandon has started eating with his first meal being chocolate pediasure. As of 4 this afternoon he has a little color to his face, his toes looks pick again and he is laughing a little at Hannah Montana (UGH). Dr Birch came in earlier and said that Brandon is looking very good, but due to his travel and the need to elevate the foot we should wait until tomorrow before he is released. We have he wheelchair here in the room to determine how to modify if needed for elevation.

The day is geting better all the time. Its getting better all the time.
Leah

Out of Surgery

Brandon is out of surgery. The surgery lasted about 2 hours with tendon and muscle transfer/lengthening. Brandon's feet have good circulation and he is handling recovery well. Based on the type of surgery he had, he will not be able to bear weight on the foot for 1 month and will need to keep the foot elevated for a while. Brandon's new wheelchair does not elevate the feet so we will have a wheelchair to take home- two in the car.

Brandon did not sleep last night and therefore kept me up all night. The nurses came in and tried to talk him into sleeping but he kept saying " I cant sleep". He has been sleepng most of the day while I have talked to the surgeon, the nutritionist, the physical therapist, the occupational therapist, the nurses, the anesthesiologist and he chaplin.

Jane stayed at Anne's house last night so one of us would have some sleep. The house is great with two very playful cats - Cody and Lighting. Both quite frisky at night.

We are anticipating Brandon will be released on Wednesday as planned. The hard part is recovery after surgery.

A little Scottish Rite story. Jane went to the car to get a few items. She got lost in the hospital and asked someone who works here which direction to the car. The person said let me take you down to the car so you dont get lost. The nurse stopped what she was doing and took her down the elevator and showed her to the car. Jane said she knew she was busy and hated to bother her. The nurse said I am never too busy to help. When was the last time you heard that in a hospital. It is refreshing.

More later.

Back for More Surgery

We are getting ready for another round of surgery. Brandon will have the tendon's repaired in the left foot. We are hoping this will be the last surgery on this foot for awhile. Kristin, Brandon's aide, was going to come with us and help during the stay but she has become ill and my friend Jane has volunteered. She has no idea what she has agreed to and we will owe her a big favor after this is done. Also, thanks to Anne Rote for the use of her place while she is on vacation and while Brandon is in the hospital. It worked out for both of us. She has a house 4.1 miles from the hospital.

Brandon checks in at 6:00 pm on Sunday July 26. For those of you wanting to know how Scottish Rite works, we will check in (yes on a weekend) and then turn in all Brandon's medications during the hospital stay. Scottish Rite does not ask for payment for most of their services and they do not bill any insurance. There is no discussion of payment. You do have to qualify based on your child's condition. I have a link in the blog to their site.

Brandon will either receive the medicine from our supply or from the hopsital's if they have a supply of that drug. They do not accept the clinical trial drug (Propolsid). I will have to administer that drug. Once we go through the medications, nursing assessment and check into the room we will be free to have dinner out. By then we will be starving. Then Brandon must come back to the hospital and have no food after 10 PM. The food at the hospital is not that great so there is a regular run to local places for food during the stay.

Brandon is scheduled for surgery with Dr Birch and his team (the blue team) at 12:30 Monday. The surgery is scheduled for 2 hours and he will be in recovery around 1 hour. Monday will be a long day. I expect that we will stay Monday night, and possibly tuesday night and hope the swelling from the foot goes down enough to place a cast and leave wednesday. Thats my plan at least.

I have been packing for 1 week. It usually takes forever to find everything and get ready. Brandon's supplies just showed up at the house and we will take his own diapers and a few other supplies. Yes 16 years of diapers. However, he only uses them now at night. During the hospital stay and for the 1st month he will be back in diapers fulltime.

Also - thanks to Jody Denberg for sending Brandon a Beatles care packet to help him with his "I'm bored time". He is thrilled.

More after we check in.
Leah

Back from another trip to Dallas

Today we came back from another very long trip to Dallas. It seems that these trips really drag on the more we go. But to make then most of the trip we stayed at the Gaylord to do a little swimming, eating and some adventure around the hotel. It is really big. Dont think we will stay again due to the expense but we had a great time there.

This morning Kristin, Brandon and I headed over to Scottish Rite in Dallas to see Dr Burich and his team. Brandon's surgery foot has started turning in again. I was worried that the four bones fused may be damaged and we will be back to sqaure one due to his regression. Dr Birch agreed and we are now headed back to surgery at the end of July. The good news is that there is only one more tendon to repair and the surgery will not be as painful. The bad news, the recovery will be the same. One month in a cast with no weight bearing, one month in a tight cast and then recovery from there. It was a long drive home after the news, however I think both Kristin and I excpeted it. We were both remembing the long hospital stay and little sleep from the first surgery amd hoping this time for the best. Brandon is handling the news well. Surgery is scheduled for July 27 with possible 3 days in patient. It's going to be a long summer. video from before the operation and some after. I put a few pictures and a video from before the operations this past year and some post operation.

Back from Dallas

Sorry this is a little late. Brandon, Kristin and I came back from Dallas last week. Brandon had the cast removed from his wrist. We all could hardly contain ourselves when Dr Birch said it could come off. Brandon does need to wear a brace for three more weeks, but at least he can remove it during baths.

Brandon also received a new more flexible brace. It will take him awhile to learn how to walk with it and more importantly- walk long distances. However, the brace is wild. Brandon thought it reminded him of the magical mystery tour. I will take a picture soon. We also jumped for joy when we found out we dont have to come back for 4 months (June). Not that I dont love Dallas or Brandon doesn't love it, but I am tired of the trip back and forth from Austin to Dallas.

In June they will check Brandon to determine if he will need more surgery in the same foot. It is very possible he will because the foot has started to turn inwards again. If the surgery is needed Brandon will go back in the hospital in late July or August. We will start the whole process over with 1 month no weight bearing (in cast) and one month with weight bearing (in cast) and recovery.

Four more months of no treamtent for now. Brandon is also seeing a genetic metabolic physician in the mean time who is running more tests to find a diagnosis. Will know if he finds anything soon.
More later
Leah

More news

Brandon had the hard cast put on his wrist. The wrist is broken. He will need to wear this cast for another 3 weeks, then back to Dallas to have it removed and have a brace placed on the wrist. Brandon also will get a new brace for his foot. He has not been able to walk on the foot with a shoe on without the hard brace. The new brace will be more flexible and a new 70's design. Brandon is a little anxious about getting another brace. He is very happy wearing the hard brace most of the time.
The bad news - it looks like the foot is again turning inward and Dr Birch believes we will need more surgery. He also said that this surgery to repair more tendons will not be as invasive as the last. I am choosing at this point to not ask too many questions until Dr Birch tells me we have to do this next surgery. I want to try and get through the broken wrist and the new brace first.
Brandon is scheduled to see a new doctor this week. The doctor is a metabolic genetic doctor. This is the only physician we have not seen to help determine a diagnosis for the foot. Again we may never know why both feet are cavernous or why he continues to break bones, but I want to say that I have tried all the tests before I give up on a diagnosis. We still have more genetic tests to run. A little good news, Brandon's scoliosis is now at 38% but his bones have developed enough that they are hopeful it will not get much worse.

Brandon is in good spirits, watched the inauguration and loved every minute of the up to date coverage. Of course he was hoping Paul McCartney would be one of the guest artists or that the Beatles would reunite for the event. More later.

New Setback

Well just when things were starting to look pretty good we have had another setback. Brandon was running (as best he can) in gym with another student and he fell on his wrist. We did not think Brandon had broken his wrist, but Brandon insisted he had broken it. I took him to the hospital and sure enough, it is broken. Brandon has a cast on the right arm from the the fingers to around the elbow. The still is wearing the brace on the right foot so he is a little unstable right now. He really looks miserable but is making the best of it. Scottish Rite has agreed to set the wrist next week when we return for a check on the foot. We are trying to take it easy this three day holiday until the new cast can be placed next week. I have to say he is a real trooper. No stopping at the Willie Museum on the way up or back this time. Leah