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