At last the end is near

Today Brandon and I went back to the Scottish Rite Hospital for a check on the second surgery Brandon had on his left foot. Brandon had some set-backs from this surgery because of the H1N1 illness at Dell Children's. Brandon's cast was removed and replaced several times. However, it didnt seem to have much of an impact. Today, Dr Birch and the Blue team gave Brandon the thumbs up on his left foot and have allowed Brandon to go brace free. They also said we will not have to go back to Scottish Rite for 6 months.

Brandon started clapping and hugged everyone in the room when he found out that he did not have to wear the brace anymore and I almost did the same when I heard we did not have to come back for 6 months. Way to go Brandon.

We will watch the right foot for now and hope it does not get worse. I dont think I could handle another hospital stay this year.

Also, on a total pamerping note, we stayed at the Warwick Hotel a few blocks from the hospital in Dallas. I love that place. We have stayed there several times over the last 2 1/2 years and everytime it has been fabulous. I can sometimes get a great rate on expedia. If you ever go to Dallas and want a little luxury, I totally recommend the Warwick or Hotel ZaZa. Brandon and I have stayed in almost ever hotel downtown and they are the best. Last night they took us to the new Hard Rock Cafe where they are having a John Lennon fundraiser (hunger) and Brandon was in heaven. I was just in heaven in the hotel. It was a nice way to spend the last two days full of doctor visits. It makes it that much more bearable.

The day before Brandon had a clinical trial visit at Dell Children's. The appointment was over two hours and I forgot my purse. So we had to drive back very south and then turnaround and head for Dallas. That landed us in rush hour traffic. But pulling up to the hotel made it all better. And finding out the next visit is in 6 months is even better.

Now back to Brandon's transition. More later.
Leah

A New Focus

Every year for many many years I try to determine what Brandon really needs to be successful for that year. Because in the big picture a parent could spend every day and night trying all the therapies, educational methods, wellness and health recommendations and still there would not be enough hours in the day. In the beginning when Brandon was born, I tried to do everything. Feeding, talking, therapies (speech, occupational, physical, swimming, massage, etc.)sign, new health and wellness recommendations. We were all exhausted, especially Brandon. I finally decided that yes many things are important, but what was really important that year? I would concentrate on that topic for one year and move to another the following.

Over the years it has been home-schooling, trying to get Brandon to eat, trying to get Brandon to walk, trying to help Brandon communicate, the list goes on. Last two years were the years of trying to find Brandon's true diagnosis and trying to correct some of his health conditions especially his feet. I know they are sound overwhelming.

But for me this year will be the most overwhelming year of them all. In December Brandon will turn 17 and we will be one year away from becoming an adult. For a child with special needs that is very significant. He will be able to make his own decisions about his health, money, school etc. that I am not sure he can really comprehend. We will need to decide about guardianship. I will need to deal with his child support. We will need to decide if we will apply for SSI assistance for him to become more self sustained as an adult. We will need to decide if we will apply for Medicare. Brandon will have 3 more years after 18 in the school system and then his assistance will be limited. We will need to decide what he wants to do as an adult, where he will live, who will be a part of helping with these decisions and what will happen if something happens to me. These are all really hard decisions. They are complicated decisions and they require a great deal of research before Brandon reaches 18.
So this next year I will began to blog about Brandon's transition to adulthood and what we learn along the way. I am interested in setting up a Board to work through this with me and to begin support of these decisions in a group. So I will research the best way to set this up. I will go over Brandon's special needs trust and changes that will be made and I will learn and report on what is needed to apply for SSI, guardianship and Medicare. Also, I was prewarned that when Brandon turns 18 he will lose Medicaid and I will have to go through a process to restore his benefits. So I will report what I learn about this as well. Brandon is currently in the CLASS waiver program.

So I am about to start the walk through the journey of change with Brandon. Feel free to walk with me and Brandon and hopefully learn as we go through this journey.

Next week Brandon and I travel back to Dallas to hopefully have the doctor's check his current brace. It is working well, but I think he may be ready to walk without the brace or possibly a flexible brace. He is doing great since returning to school. I am so greatful for all the support from everyone during his scary hospital stay. More soon.

Leah

Almost back to our normal

I had a friend call me this weekend. While we were talking a told her I just wanted things to get back to normal. She asked if it is ever normal around here. Great question. I replied, I just want our normal. So I can say we are almost back to our normal and Brandon and I are loving it.

Brandon finally started back to school last week for 1/2 days and several doctor appointments. He did really great. He finished the last of the horrible antibotic and got back on his regular medicines. Brandon is on a clinical trial medication that really helps with his swallowing and it is so great to be able to take it again. I really helps him more than I thought. I am hoping after a few weeks we won't have to thicken liquids anymore.

I changed Brandon's button (g-tube) to one more high school appropriate, but just a little too large. It will do for now and he is so happy not to have one hanging 5 inches down his stomach.

Brandon went back to Scottish Rite and had the new "peace" brace fitted for him. He must wear it for 6 weeks. We will go back in November and probably get a more flexbile brace. Brandon is up a walking fairly well and at home he does not have to use the brace.

I am still nervious about exposing him to any new illnesses so we have been staying at home except when at school or the doctor appointments.

Brandon's seizure medication was very off and way too strong. We reduced it significantly and tomorrow we are back to the neurologist to get the dosage finalized.

I did order Brandon's medical records from Dell Children's for $136.00. For anyone who hasn't dealt much with medical procedures, hospitalizations, etc, it is always a good idea after every major event to order the complete medical records. You find out way more than anyone every tells you and it helps in the future to be a great advocate. A few new things I learned is that they considered placing Brandon on a ventilator, they were very concerned because Brandon's blood pressure was too low for too long and there is a much clearer explanation of the issues with the lungs. All great things to know in the future. I may not have said it in the blog, they also were concerned that Brandon's kidneys had shut down and he was losing blood and was close to a blood transufion.

I am just glad everything is fine now. I keep reading stories of other kids in the same situation and really feel for those kids and their families. There was another child in ICU while we were there in much worse condition than Brandon. I hope everything came out okay.

So yes we are almost back to our normal. Complete normal will come when Brandon is walking independently,going back upstairs to the computer and we can get out and see some of you. More later.
Leah

What to do next

I haven't updated the blog since we left the hospital and several of you have asked what is going on with Brandon. I haven't updated because it is hard for me to tell how he is doing. To me he is weak, not 100%, still has congestion, but watching TV, playing the Beatles rock band, not sitting up much, fairly happy and much better than in the hospital. The question is when can he go back to school and when should we start pushing him to get up and out. It is hard for me to tell because Brandon has been sick many times in his life and the rebound is always different. The doctors working with Brandon said that this was an extreme attack on Brandon's body and it will take time to recover. But just like you and I after surgery or an illness when do we go back to work. Plus the added guilt because I am a daughter and niece of lifetime teachers and it is implanted somewhere in my brain that kids have to go to school. I never missed school very often when I was growing up due to the nagging of my school teacher mom and that was passed on to me.

I had planned for next Monday. But yesterday I took Brandon back to the infectious disease doctor and she said Brandon sounded worse. She read the report of the latest chest x-ray and asked for us to have more tests done and immediately started him back on levaquin. This is an extremely strong antibiotic with many side effects but I know Brandon's pneumonia will be difficult to clear. I gave him a second dose today. After realizing that his pneumonia may not be better than when we left the hospital I decided to give him another week to decide what to do and get past my guilt. In the meantime I will go back next week to Scottish Rite to deal with his foot surgery issues.

We left Dell Children's with Brandon in a "boot" for Brandon's foot. It is too big and awkward for Brandon to walk on, so the foot issue will become bigger as Brandon wants to get up and walk. Also, I mentioned the g-tube in a previous post. Brandon has a long, old fashioned G-tube hanging about 5 inches down from his stomach. That was fine while he was so ill, but if he is up and moving the risk of his catching it on something and coming out are high. Plus, Brandon hates it. I was getting a replacement mic-key (the g-tube flat on the stomach) but his size is on national back order and there is not an end date on when it will come. So in the meantime we are talking with Brandon's GI doc to see if the size below or above will be okay. Brandon is complaining about the g-tube so I really want to get this done before he returns to school.

We are also dealing with the swallowing issues. I think Brandon is a little stronger and his swallowing is a little better but if his lungs are worse I have to be very careful on what he eats so there is no aspiration. Therefore, we are thickening his liquids and limiting his diet for now. Once Brandon is off the levaquin we can continue on the clinical trial medicine of Proposid which helps move fluids through his body and helps with the swallowing issues. Brandon has lost 10 pounds which he didnt need to lose and Brandon's doctor estimates he needs 2600 calories a day to gain weight. We are not there yet.

Again it is just a waiting game to get better but so much better being home to recover.
Leah

Home at Last

We were finally discharged today from Dell Children's hospital after 12 very long days. I cant tell how great it feels to be home and trying to get back to our routine. Brandon is so happy. We did not get discharged until 4:00 PM today due to some medication issues, but finally the signed papers and we were out of there.

Brandon will need to recover at home for two more weeks. His lungs are still congested, especially on the right side. He is also very weak and lost 10 pounds. But we are both glad to get home.

Now we need to figure out how to play Beatles Rock Band. Any volunteers on coming over a giving a few pointers let me know.

Finally today the doctors told me that Brandon had the H1N1 flu and that he was very lucky it did not get worse. Everyone said he waas very very ill. He is now clear of that flu and has taken Tamiflu to help with any others. He also was on 4 different antibiotics and hope that will help him through the school year.

I want to thank everyone for your prayers, words of encourgement, for listening, for all the help (food, going to my house, taking the chickens, helping with the other animals and for our care packages and more). I dont think I could have made it for 12 days taking care of Brandon without you guys.
Love you and more later.
Leah

Finally out of ICU

Today was a fast moving day. After a complete night without the Bipap machine and only on oxygen, Brandon transitioned to just oxygen through the cannula. That is significant because oxygen through the cannula is much less oxygen than oxygen through a mask. So Brandon is on a small amount of oxygen. On top of making great progress on the oxygen, the lungs sound much better. The lungs still have a way to go before they are clear, but there is significant air movement. In addition, Brandon has been fever free for two days and he was removed from isolation.

This morning the intensive care physician visited with us and said they wanted to remove Brandon from all the IVs, put him on cannula oxygen and move him to a regular room. However, as the day progressed we found out that all the rooms were full due to the large number of kids going to the ER. Last night the ER was standing room only. Finally this afternoon a room opened and he was moved to room 434, a regular room not in ICU or intermediate care. He is still receiving respiratory therapy.

Now we have a few remaining things that we haven't spend too much energy addressing while he was in ICU. The first is Brandon's g-tube. I think I mentioned that the g-tube was bleeding out the sides when we were admitted. It turns out there was a significant infection in the g-tube and it needed medication to clear. We needed to remove the old g-tube and replace with a new one. Dr Zweinner decided for now to place a long regular g-tube and not the kind Brandon had in previously. This allowed the site to clear and allow time before we place a new mic-key. I know alot of medical talk, but the new mic-key opens like a beach ball and is flat to the stomach. The old kind that he has in currently hangs about 5 inches out of the stomach. If you are an active kid the risk of pulling it out are very high. So we need to repair this before we go.

The second issue is that Brandon's condition possibly was worse because he may have been aspirating on Saturday before we were admitted. His swallowing became worse on Friday and Saturday before we were admitted and I was worried about aspiration. Because his lungs are so bad now I don't want to go home, have Brandon start to eat and drink and end out back here because he is aspirating food or drinks into his lungs. So tomorrow we are doing a swallow study to check for any aspiration. If he is aspirating we will have to change his diet until he is stronger.

The last more irritating issue is the one I want addressed before we go. Remember the reason I started this blog is because Brandon had surgery on his foot. That was over 7 weeks ago and this Thursday the cast was to come off and the brace we had molded would be placed. I don't know if you have ever had a cast on, and one on for over 2 months, but the only thing you want is to have it off. The site has healed and he is ready for the foot and leg to be out of a cast. So this is the irritating thing. We were afraid that the surgery site had become infected and had to remove the walking cast Brandon had on that Scottish Rite put on 3 weeks ago. He was up and walking on the cast and was only using the wheelchair for long distances. Kind of a big deal when you are in high school. The orthopedic surgeon on call was asked to contact Scottish Rite and see what they wanted to do when we found out the surgery site was fine. It was Labor Day weekend and an intern at Scottish Rite said to put the cast back on, so the orthopedic surgeon put the cast back on but not for walking. I complained that we were going backwards and not forwards. So again this weekend the ortho guys came back and placed a splint that can be removed, but you cant walk on it. I complained again and they said they could place the brace if Scottish Rite would ship it. So now we are in between the two hospitals and Brandon basically may leave here without being able to bear any weight AGAIN. Okay I know - blah blah blah. But it is irritating.

Bottom line we are looking at a possible mid week discharge after we try to get his lungs clearer, breathing better and these three issues above. When the intensive care physician told Brandon we would be discharged this week he started squealing and clapping for joy. It was great to see. More tomorrow.
Leah

The UnKnown Diagnosis

Today we made great progress. Brandon is now off the Bipap breathing machine after 7 days. He is on oxygen and his lungs still have a long way to go, but he does not need a machine to help him breath at this point. We also stopped the aggressive respiratory treatments that Brandon hated. He is still getting respiratory treatments every 3 hours. I am hoping that they will move us to intermediate care Monday or Tuesday if he continues to improve.

The doctors have been unable to determine the exact cause of why we are here in the first place. On Thursday night when I brought him to the ER he tested negative to the flu, step and pneumonia. On Saturday night when we returned he tested positive to Type A flu which is associated with the H1N1 strain. However, a definitive test for H1N1 is done by the CDC and those results can take at least 1 month to return. Because Brandon has two tests with different results, when he came here to the ICU they did another more defined flu test and that test came back negative. I have found out that it is actually very hard to diagnose the flu because the swab has to go fairly far back in the nose to get a good sample. So the doctors in the ICU unit did another test which requires cultures to grow bacteria. These tests also take a long time and Brandon could be gone before the final results will come back. But so far there are no results from this test as well. Colleen Horton reminded me today when she came by that this is not the first time I have been searching for a diagnosis for Brandon. Two years ago when we started going to Scottish Rite the doctors there questioned why Brandon had two caverous feet. They were convinced that Brandon had an underlying condition that was not diagnosed. We have run many many tests since then trying to find a diagnosis. They also reviewed all the previous tests performed on Brandon the last 16 years and are not convinced that Brandon's diagnosis of cerebral palsy is accurate. Needless so say that conversation was a little shocking for me.

Really a diagnosis is not that important as long as Brandon gets well. It is always nice to know why so you can avoid whatever caused the problem in the first place, but medicine is not always that precise. I will continue to search for a diagnosis for Brandon's caverous foot condition because the symptoms are progressive, unlike cerebral palsy which is static.

I would like to know what caused this hospitalization and try to protect Brandon in the future. But no one really knows when a virus or a flu or any other condition will have this kind of affect. You just have to be as careful as possible to avoid an illness. Right now I just want him to get well so we can go home. More tomorrow. Leah

Better Day

Today was a turnaround day. Finally Brandon's right lung has some air movement. We are on day 7 in the hospital and day 6 in ICU. I was starting to worry about the right lung, because we have not seen improvement. But today finally we are hearing air movement. That means that the right lung is recovering. We still need to clear both lungs. This is a big improvement.

Also today, Brandon felt well enough to cough, which is important to help clear the lungs as well. He continues to receive intrapulmonary percussive ventilation. Which helps clear the lungs. However, Brandon hates the treamtent and is really fighting it. It is really hard to watch because Brandon very rarely has such a harse reaction to anything. Tonight we will decide if he will continue this treatment. More good news, Brandon has been off the Bipap breathing machine for 1 hour increments and was able to mainting his saturation rates in the lungs three times today. If this continues, that means we are close to getting off the Bipap machine. They are taking this step very slowly because if we take him off the Bipap too soon he can regress very quickly and we would start all over.

Brandon was also up playing Old Maid with me this afternoon. They let him sit up for 1 hour. He was really tired after he sat up but did a great job during the hour. Oh by the way - he won.

Laura Warren came to see us tonight. She is the first person to pass the isolation barrier of room 45 (with the exception of Brandon's school nurse and Lee Ann another nurse). Both my brother and I are already exposed so we do not have to take the protections. But everyone else coming into the room must wear a mask, a gown and sterile gloves if approaching Brandon. Before Laura came in, they made her suit up. I did ask the doctors today how much longer we would need this protection. I didn't really get a clear answer, but I keep hearing he will be safe after the normal virus/flu period which is normally 10 days. We are approaching 10 days. I think they will also want him termperature free and we are close to this as well.

So big success today, but alot of hard work for Brandon. He starting to complain about being in the hospital and asking when we can go home. The latest response is a countdown of minutes everytime he coughs. We were up to 54 coughs this evening. That is 54 more coughs than any other day. More tomorrow.
Leah

Another long day

Some of you have asked about the ICU unit here at Dell Children's Hospital. I wanted to share with you how the unit operates and housed. The old children's hospital (Brackenridge) here in Austin was not family friendly when your child needed to be in the ICU. I think Brandon has been there twice when he was very young. There was a chair in the room but no place to sleep. Families had to spend time in the waiting area and it was not private. Groups of families would grieve while other families waited, while others shared their joy. It was very hard. You would find family members sleeping in the waiting area. Some rooms were shared and were very small. It was not a place where you would even consider staying for a week.

Dell's new ICU unit has private rooms with the nursing station right outside the room and a window looking in on the patient. All beepers are also active in the nurses station. Each room has its own bathroom, sleeping for two (besides Brandon), free internet (thank you Michael Dell), and a rocking chair. There are team meetings twice a day with the team working on the care of Brandon. I can sit in on the meetings. They go over the latest data and set a plan for the day. Brandon has a respiratory therapist working with him all day. There are interns assigned to Brandon and they work with the specialists. Brandon's specialist is the Infectious Disease Physician. Really, Brandon has excellent care, just slow recovery. So with the exception of the beeping and people coming in all night, I get a pretty good night's sleep. Physicians start coming in around 8 am.

Today was another day of really agressively trying to get Brandon's lungs cleared. The right lung is still not moving air, but the left lung continues to improve. Brandon sat up for the first time today in a chair. He still continues to have a low grade fever at night. The goal now is to continue trying to get Brandon up, try trial periods without the Bipap machine and continue with respiratory therapy.

I am much more rested today after my long hot bath and a good night's sleep. Thank you to everyone who has signed up to bring food to the hospital. I really appreciate it. It is also good to visit with each of you.
More tomorrow.
Leah

New Update

Well today was a little bit of a mommy day. I had to go to work for a few meetings. I would not have gone into work if Brandon's condition was worse. My rock star brother Jim volunteered to give me a break and took off thursday and friday. Thanks Jim. Not an easy job. But Jim has already been exposed to Brandon so it was a logical choice.

I worked until 3:30, went back to the hospital to check on Brandon's condition and I am just now home. I am writing this early because I am also exhausted and need a good night's sleep, a hot bath without interuptions and a little down time.

Brandon's right lung has really filled up and they wanted to agressively try to get air movement in the lung today. They started new agreesive treatments that basically put pressure inside the lungs to try and shake them clear. By the time I left we could hear a little air movement. I will take that. Brandon continues to not be able to breath independently. So one more day in ICU. Tomorrow we will try and get him up in hopes he will try to clear his lungs independently. They will probably also try brief periods of lowering the oxygen on the BiPap and see how he tolerates the change. Tomorrow will be 5 days in ICU.

I wanted to share a story from Brandon's aide at school that made my day and a little crying, but it is so Brandon. She said "We were working on a poem together in English. He (Brandon) was asked to describe himself in two words. He chose LOVING and KIND. He is such a wise 16 year old soul!" Pat I told Brandon about your e-mail and it made him smile. But it is so true.

Thank you all for your kind words and reminding me why Brandon is so special to me and to everyone who knows him.

I am going to bed and will have an update tomorrow.
Leah

A Little Better

Today has been a really busy day here at Dell Children's Hospital ICU room 45. We started out really well. Brandon was awake, watching Disney and laughing for at least 50% of the day. His color looks much better. His lungs are still full in the lower lobes, but better in the upper. One side is better than the other. The goal is to take him off the breathing machine and transition him to oxygen. We tried to lower his oxygen rate on the BiPap, but slowly Brandon's saturation rates went down during the day. Therefore, we had to up the level of oxygen he is getting on the BiPap machine. We will try again tomorrow to lower the oxygen rate on the BiPap and transition to oxygen through a mask. We are sill in ICU and will be here as long as he is on the Bipap. Brandon's temperature was good today, but again tonight it is up. Right now at 102.

The Infectious Disease doctor came by today and said that she is estimating based on today that Brandon will be here between 10 to 14 more days and that once released he will be extremely weak and unable to go to school for at least two weeks after release. The goal she discussed was getting the fever under control and trying to clear the lungs. Right now there is very thick mucous and fluid on the lungs that need to be cleared. She said recovery wil be slow.

Brandon also had two IV's go out today. One of them leaked 90 cc's of fluid into his hand. The hand was very swollen and is now draining. It will take days to clear, but it is much better than this morning.

The good news for the day is that everyone is now talking recovery. That is much better than the alternative, even if it is a long slow process. The best news is that Brandon was really happy today 9/9/09 and ready for all the new Beatles CDs and Beatles rock band. He laughed throughout the day and interacted with everyone. Little baby steps getting better is great with me. More tomorrow.
Leah

One more day

Well today has been more in a holding pattern for Brandon. The doctors came in last night and said that we are going to take it one day at a time from here. It is all about waiting for the next tests, the next doctor, the next therapist, the next nurse. Now thinking back on it, it has been 16 years of waiting on walking, talking, schooling, surgeries, feeding, many more little things that we all take for granted everyday. Brandon always reminds me of what is important and to not take those things we do so easily for granted. So here we are one more time, but this time I am more worried than I have been in a long time that this is very serious and for 16 years I have been blessed. I also have to remember that the most important thing I want for Brandon is that he is happy.

So tonight the day before 9/9/09 and the release of all the Bealtes materials Brandon did awaken a few minutes to hear that tomorrow is the big day and when we return home the Beatles rock band will be awaiting.

Brandon's brother Patrick came down today to be with him and that made him happy. Today Brandon did not get worse. His lungs are the same as yesterday, but not worse. His temperature was down today, but back up this evening. His blood count has risen slightly which is good. Brandon has sleep 95% of today except for the brief moments with Patrick, the Beatles and when the respiratory therapist arrived. Otherwise he is fairly comfortable.

More tomorrow. Thanks for all your calls, e-mails, meals, errands and prayers. More tomorrow.
Leah

Brandon Update

I have not had time to do an update for everyone concerning Brandon. Thursday I came home from a trip out of town to find Brandon not feeing well. He had runny eyes, a cough and some chest congestion. After dinner he went straight to bed. I decided I needed to take his temperature around 7 PM and it was 101. I didnt think too much about it and gave him tylenol, extra fluids and put him to bed. That night there was a news report that a large number of kids with CP and seizure disorder were more affected by the H1N1 flu than others and that was in the back of my mind. At 10 PM I took his temperature again and it was 104.8. I called the afterhours clinic at ARC and they advised me to go ahead and take him to the ER to get checked out.

We went to the ER and they ran several tests including the flu, but all were negative. They told me he had a virus and to take him home home and treat him for the virus. I took Bandon home started him on tylenol and motrin and as many liquids as possible. Friday the fever stayed at 104 and he slowly got worse. Saturday I felt a little out of my league as Branon started to have problems breathing. I again called ARC as it got later in the evening. Brandon has a g-tube placed that he uses when he is sick. I noticed that a black substance was coming out the edges and told the nurse. We both did not think took much about it. However, at midnight the nurse fom ARC calld and said that the doctor was afraid that the black substance was blood and we needed to head to the ER. Brandon and I headed back to the ER at Dell Children's Hospital.

When we got here I found out that Brandon had pneumonia in both lungs and that he did have the flu. They sent the sample to the CDC to cofirm H1N1. However confirmation can take quite a while. Brandon's oxygen rates were very poor so they admitted him to the hospital. We were in a regular room Sunday morning, but Brandon started to struggle to breath and they found blood in his urine and blood coming out of the G-tube. They moved him to the intermediate care in the afternoon for closer monitoring. We stayed last night in intermediate care. It looked like Brandon was getting better but in the afternoon his breathing became more labored and his lungs collapsed. They quickly moved him to ICU where we are now.

They have Brandon connected to a CPAP machine to open the lungs and allow the lungs to heal. They also have him on several different antibotics trying to kill the infection. They have consulted wih an infectious disease physician here and are monitoring him closely. Right now we will just need to wait and hope Brandon can keep fighting this infection.

I want to thank all of you for your support, your prayers and encourgement during this time. I really appreciate your help. I have very limited access to e-mamil and phone, but I am getting all your messages.

I will try to keep this blog updated as we continue with this battle and hope you all keep your prayers up for Brandon at this time.

Thanks so much
Leah

New Cast is On

Yesterday I broke one of my rules. Never try to drive up and back from Dallas or Houston after a medical appointment with Brandon. But I am in the middle of some work I needed to do, so I made the expection yesterday. I did however take a friend for the trip. Jane again volunteered for the day. Thank you Jane.

The day was very long leaving here at 8 AM and returning at 9:30 PM. But it was very productive. Brandon had the cast removed and the button on the bottom of the foot removed. I spared you guys from seeing the button, it is pretty graphic. Take my word for it, it needed to go. The leg and foot look great and Brandon was not in too much pain. You can see below pictures from yesterday.

The new cast will be on for 1 month. Brandon can walk on this cast. For now he is still in the wheelchair but will be up and walking with a walker soon. Just in time for school. Brandon also had his foot molded for a new brace. At Scottish Rite they let the kids pick out a design to go with the brace and Brandon choose the Peace sign. No telling what it will look like. But it is in harmony with what Brandon likes. Brandon did great yesterday with the exception of complaining about not going to see Paul McCartney the night before. However, new information on an early John Lennon interview is in the the Rolling Stone Magazine and Brandon could not stop talking about it. So we were good.

More later

New Walking Cast

Molding leg for new brace with Peace signs

Removing the cast

Brandon and Ringo attempting step 1

I Forgot

Brandon is 16 years old and over the years he has been in and out of the wheelchair for various reasons. Brandon did not walk until his was 4 1/2. We broke down and ordered his first wheelchair at 3. Brandon's brother was insistant that Brandon would walk and made it his mission to work with Brandon endless hours on taking steps, balance and endurance. It finally paid off and Brandon started walking. The wheelchair was barely broken in. But for distances, after illnesses, broken bones, after surgeries and on some vacations, Brandon has relied on the wheelchair for his mobility. When Brandon was around 6, a friend's business was closing and I bought a $1500 wheelchair from her for $200. It was way too big, but I knew it would come in handy for the future. Brandon's smaller wheelchair finally was too small and we transitioned into the new larger $200 chair. We kept and used that chair until last year when it finally fell apart. I still have it as backup in case his new one needs repair.

During the use of the wheelchair I keep trying to remind myself of how great Brandon was doing when is not in the wheelchair. Life is soooo difficult when we have to go back to its use.

So here we are again, back 100% in the wheelchair. But this time Brandon weighs over 100 pounds and getting in, out and about is more of a challenge. Everytime I decide I need to prepare for the next time. I have two steps into the house not more than a few inches off the ground, but very difficult to navigate. Brandon braces for the bumps everytime I try to move him over these two steps only to head to the grass and to the car. When it rained last week Brandon had to go to school for registration. His wheelchair became stuck in the mud, his aide and I were frantically trying to cover his foot and keep it dry while we were all getting wet in the process. It is not easy.

In the house, all the doors are just slightly too small to comfortably squeeze through, the bathroom is difficult to move around with the wheelchair and Brandon cannot go upstair where all his computer equipment is located. It is not easy.

Just when I swear I am going to make life a little easier and try to make this place a little more accessible Brandon is out of the wheelchair and I forget that it is not easy. I hope writing this will remind me. It is not easy.

So tomorrow we head back to Scottish Rite and the cast Brandon has been in for 3 1/2 weeks with no weight bearing will come off. Tomorrow Brandon will have a walking cast on his leg. He won't be able to walk right away but we will both be motivated to get him back on his feet as soon as possible, because it is not easy.

Brandon has been in his bed with his foot up for a large part of the 3 1/2 weeks, watching TV, downloading Beatles videos, watching the Beatles and Elvis on youtube. Tomorrow begins his new phase of recovery and hope for a little independence like every 16 yr old. We both cant wait.

More after our return.
Leah

Back in Austin

Last night Brandon physician came by and wrapped up his split cast to stay protected for the next 30 days. Brandon's foot is swelling and he is still in pain. However, he is recovering well and really can continue the recovery at home. He will need to have his leg elevated for at least one more week, not moisture in the cast and no weight bearing for 30 days. For the next week Brandon will basically need to be bed bound with an elevated foot.

This morning the Dr Birch released Brandon and will not see him back in the clinic for 1 month for removal of the first split cast and replacement with a thight cast. We checked out the medicines, wrapped the cast a bit more and was out of the hospital by 10 am. On the way home Brandon had to have the foot elevated. He began developing lung congestion and it became worse the longer he was in the car. I got him back in the house and realized that I also had chest congestion and a sore throat and Jane was coughing when I dropped her off. Brandon and I began running a low grade temp this afternoon and we were really tired. It is probably from the lack of sleep, but just to be safe I set an appointment with Brandon's regular pediatrician for tomorrow for a check.

When Brandon arrived waiting for him was the Beatles care packet from Jody Denberg. He has been happy ever since and listening to the Beatles most of the day.

All in all this was much easier than the last surgery and I am glad we are home for awhile.
More later
Leah

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