- At birth I asked for Brandon not to have a trach inserted as the doctors were trying to determine how to best treat Brandon. It perhaps kept Brandon in the hospital longer but emerged with Brandon learning to clear his own airway and learning to suction his own secretions.
- I held off on inserting a g-tube into Brandon's stomach for 1 year based on the recommendation of a therapist. But I also had to stick a tube down Brandon's throat for 1 year just to feed him. This left him with serious oral aversion.
- When I finally decided it was time to insert the g-tube, he weighed 13 pounds as a 1 year old and seriously needed nutrition. When the g-tube was inserted he immediately began to thrive.
- When Brandon was ill at age 16 with some awful bug, I took him to the ER who said he had a virus and to take him home and treat it like a virus. It was when H1N1 was going around. I cancelled his doctor visit for the next day and proceeded to treat a virus. Two days later Brandon was on life support in the ICU at Dell. I waited too long to treat the "virus" which turned out to be H1N1, but I was in speedy once I realized it wasn't.
- When Brandon's foot began to curl inward and I realized he may lose the ability to walk I spent two years meeting with doctors all over Texas to figure out the right path. One doctor said do nothing. One doctor said he needed surgery on both legs and hamstrings. One doctor said he needed surgery on the foot. I finally went to Scottish Rite in Dallas where they asked why is this happening and they wanted to know the answers before any surgery considerations. After two years of testing we had no idea why he foot was curling, but an entire team agreed if Brandon was to walk on this foot he needed surgery to rebuild the foot. Not just one surgery but two. I didn't feel like there was too much risk with this surgery because if he didn't do the surgery he would lose the ability to use the foot. I also took the conservative route with only 1 foot being operating on.
- The list goes on. But these are all major decisions that can have lifelong impacts on Brandon.
I MADE THESE DECISIONS ALONE, BUT I MADE THE DECISIONS BASED ON AS MUCH INFORMATION I COULD FIND AT THE TIME.
To me, the decision coming up is the hardest so far. Two surgeons have said that Brandon needs to have scoliosis surgery. The guess is that Brandon will need a rod inserted to t10 or t11. For anyone healthy this is a major surgery. For Brandon this is a risky surgery that can result in pain and possible breaks in other portions of the back or in the area where they are inserting the rod. Brandon also has osteoporosis. Yes we are treating the osteoporosis, but I don't think anyone is anticipating that Brandon will completely heal from osteoporosis. The hope is that he grows enough bone to make the surgery possible. Before his year is up using the growth drug (forteo), he can continue on the drug during the surgery recovery period which should allow the bones to heal quicker after surgery. BUT he is still at risk of possible breaks and long term pain that currently seems to be manageable for him.
If we don't go forward with the surgery we have heard that Brandon's spine will continue to collapse. No one can tell me how fast, but it has been around 3 -4 for years since I last looked at this surgery for Brandon and since then Brandon's spine is slowly collapsing. The surgeons have told us with no surgery the spine can possibly press against the lungs and perhaps can cause nerve damage so severe he may lose the use of his legs.
The only thing Brandon is concerned with is that we have the surgery after Paul McCartney concert. He trusts me when making these medical decisions for him. This time I have had more conversations with him about the recovery, the surgery and the possible pain, but the decision is not any easier. I have to admit I am struggling with this one. I don't feel like the options and either outcome is good. And I don't feel like I have a team working with Brandon like I have had for other decisions because he is no longing a pediatric patient. He has a primary care doctor who seems good when Brandon has a cold or other illnesses, but this is way beyond his expertise. I have a great integrative medicine doctor focused on treating the osteoporosis, I have the best surgeon in Austin (at least I think so) who has done a ton of scoliosis surgeries including those on young adults like Brandon, I had a second orthopedic doctor who believes Brandon needs surgery, we went to an endocrinologist who really just didn't know what to do with Brandon. But it is not really a team of professionals looking at Brandon as a whole person and helping me and Brandon with the best decision.
The only thing we can do at this time is get as much information possible on the spine, the scoliosis and reasons why Brandon has the scoliosis besides use of certain drugs (if there are other reasons) and try to get an update on any genetic information to help determine long term outcomes. So tomorrow is the first of many more tests and doctors. Brandon will have a myelogram and some scans done under general anesthesia at Dell Children's hospital. The tests will take over two hours and he will have to stay in bed for two days to avoid having an extreme headache.
I have scheduled a 2nd opinion in Houston and about to schedule a third opinion in Dallas before the scheduled surgery date in October. This one is bothering me, so if I seem obsessed asking for any bit of information know that I am doing it for the best outcome for Brandon.
Wish us luck tomorrow and as we continue on this journey. I will keep you updated. I am prepared for many different opinions along the way from the very medical professionals who treat this type of illness. I know it is hard for them as well because Brandon is medically complex. But in the end, it will be me and Brandon making the decision.
More later
Leah
The only thing we can do at this time is get as much information possible on the spine, the scoliosis and reasons why Brandon has the scoliosis besides use of certain drugs (if there are other reasons) and try to get an update on any genetic information to help determine long term outcomes. So tomorrow is the first of many more tests and doctors. Brandon will have a myelogram and some scans done under general anesthesia at Dell Children's hospital. The tests will take over two hours and he will have to stay in bed for two days to avoid having an extreme headache.
I have scheduled a 2nd opinion in Houston and about to schedule a third opinion in Dallas before the scheduled surgery date in October. This one is bothering me, so if I seem obsessed asking for any bit of information know that I am doing it for the best outcome for Brandon.
Wish us luck tomorrow and as we continue on this journey. I will keep you updated. I am prepared for many different opinions along the way from the very medical professionals who treat this type of illness. I know it is hard for them as well because Brandon is medically complex. But in the end, it will be me and Brandon making the decision.
More later
Leah
