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