For the last few months I have been quietly taking in more information in an attempt to make a decision concerning Brandon's scoliosis surgery. We were lucky to have a nice break with Brandon meeting Paul McCartney and a few musical performances Brandon and his band had the last few months. But I haven't stopped trying to gather the best information I can find concerning the recommendations Brandon has received from several very qualified physicians. I have come to some conclusions.
- Everyone agrees Brandon must have surgery or his condition will continue to decline.
- Brandon's multiple conditions make a decision difficult for me and the physicians treating Brandon, perhaps intimidating.
- All the physicians are confident in their recommendations, but appear to recommend treatment based on expertise they have gained treating patients like Brandon. There does not seems to be a clinical norm for Brandon's treatment.
- Everyone would like an explanation of why Brandon has such severe osteoporosis. Me too.
- I will be hesitant to move forward on anything until I feel comfortable with the outcome. I am not a clinician and need help working through how to make me feel more comfortable making a decision.
- Whomever treats Brandon better like the Beatles.
I have reviewed all three recommendations for surgery. I decided not to move forward with the surgeon in Austin mainly because he has less experience operating on people with complex medical conditions. The other two surgeons have drastically different recommendations. Neither of the recommendations are wrong, just a different philosophy on how to repair the spine for this specific population.
In the last month I reviewed one of the recommendations put in writing, I called the other surgeon and clarified his recommendations. I then compared their recommendations. I don't often talk about working at UnitedHealthcare but they have been incredibly helpful even though perhaps by accident. United has a mandatory "spine" program for employees. I was hesitant to sign up for the program because I often find these programs are for someone without complex conditions and can just add more work for me. That is the case for the "spine" program, but the staff still wanted to help me find the right solution. They guided me on questions to ask the surgeons. I set up two more calls and received more clarification on exactly what they are recommending. After getting those additional details I worked with our assigned nurse and went over the two plans. She took the information and talked to the medical director of the program. He recommended that Brandon go to one of three centers of excellence to help us work through what surgery options will lead to the best outcomes. Today I had a 40 minute call with the medical director and we agreed that the best place for Brandon to go next before deciding which surgery is the Mayo Clinic. We decided on the Mayo clinic because of the conclusions above. The Mayo clinic will develop a team approach for looking at Brandon's options including determining any underlying cause of the osteoporosis and if this may have an impact on the overall results from surgery. They also have a spine program that is number 1 and 2 rated in the United States. I placed a call to the Mayo and started the application process which took 40 minutes. My new BFF medical director will call the Mayo clinic to determine the best path with them and try to help us through the process. For those of you that don't know, the Mayo Clinic is in Minnesota. It will probably be cold there when we go. I don't really love the cold but hey - thinking of it as an adventure.
So this all sounds like good news but it is pretty depressing for me and brings up how medically complex Brandon truly is. I have been a little sad this week. Trying to think of the positive but any change with Brandon always results in the grieving process starting over for me. I am telling you this because as a mom I am not the only one. The next time you hear a mom with a child with autism talk about a new struggle with her child, or a mom trying to work through her child having new seizures that were previously under control, or a child's behavior changing, know that that mom will probably go through the grieving process at some point. I hope you support that mom as she, her family and her child work through the change.
I think I talked about this previously but I have to point out that next week I am taking the week off. It is my birthday. Taking a Leah and Tony day in San Antonio. Brandon has a dental procedure on Monday under sedation. The rest of the week I will be copying and faxing Brandon's complete medical records to the Mayo. This includes ordering and picking up copies of xrays on CDs from various facilities all over Austin. The reason why? - the Mayo as with Baylor and all the other facilities we have been to so far do not accept electronic medical records. They must either be faxed or mailed. This is kind of shocking to me, but I will take a day for collecting all the records and getting them to the Mayo.
Some really good news - Brandon was accepted by UnitedHealthcare to continue as a dependent under my coverage indefinitely due to his disability after his birthday in December where he will turn 26. I will blog on this separately for those parents looking to understand this process.
Brandon also had an appointment with Sharon Hausman-Cohen (his integrative medicine doctor who I love) a few weeks ago and we were able to get extensive results back from her new genetics program. I will also blog on this separately as it deserves its own post. As a result we have modified Brandon's supplements.
AND - It looks like Brandon will start the new CBD oil drug Epidiolex approved by he FDA. He should start this in December. The hope is to start lowering Briviact (his seizure medication).
Too much going on. That's all for now,
Have a great Thanksgiving Holiday. Remember to hug your loved ones and I hope you are able to spend time with your family.
And as Brandon says - ALL YOU NEED IS LOVE.
Leah
