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
