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
Monday, September 7, 2009
Friday, August 21, 2009
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
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
Wednesday, August 19, 2009
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
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
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