Osteoporosis - We talked to his surgeon Dr. Viere in Dallas, Tx today. Our main goal at this point is to try and get Brandon's overall osteoporosis level below 2.0. Our integral medicine doctor, the MD Anderson doctor and Dr. Viere all feel that Brandon would benefit from a total of three years on forteo medication. Normally forteo is only approved for 2 years, but the physicians all believe they can get a third year approved for Brandon based on his severity and the need for surgery. This is really our one time shot to get Brandon's bones in the best shape possible. We are also seeing great progress on Brandon's bone density and I will also attribute that to the other things we are doing to build bone including the supplements, the exercise and we will soon be adding physical therapy to help build strength for Brandon's legs/ankles/feet. Hopefully this will help him recover faster when he will be relying on the legs during recovery.
Scoliosis Surgery - I am feeling very confident in choosing Dr. Viere for the surgery. Because we are going to try for a third year on forteo, we are planning to do the surgery between 6 to 3 months prior to getting off forteo. The goal is to have Brandon continue on forteo while recovering. It will help build bone quicker leading to a faster and more successful surgery. The surgeon agrees that Brandon is not declining as fast as some x-rays have shown. But like all the other surgeons believes Brandon will decline as he ages. Having surgery while Brandon is younger also will allow for a more successful surgery and recovery. The plan -surgery the summer of 2020.
G-tube - We said goodbye to Mr. Mic-Key (g-tube). But Brandon is now on his 6th round of antibiotics. He is absolutely the best patient and much better than I ever would be based on what he has been through the last 4 months with his g-tube infection. The site looks better. The surgeon (for the g-tube) said it may take up to a year for it to completely heal. We are cleaning it everyday, putting medicine on the site (turmeric and probiotic) and he is taking oral antibiotics. I have handed over the care of the site to the integral medicine doctor because I cant find any other doctors who understand how to treat it. She has been invaluable in trying to get this healed. Hopefully the 6th time (medicine) is the charm.
Genetics - The Mayo coordinated with Baylor. Basically no new genetic issues have been found. That also means that we really don't have a diagnosis. Brandon will stay on the Mayo clinic's research project for people who are undiagnosed. The study will continue to search for a diagnosis until there is a diagnosis. This tells us enough information for the surgery. Brandon probably has some kind of genetic condition that impacted his osteoporosis. But they have been unable to identify the condition and therefore it has no impact on whether to proceed with surgery.
I am feeling relieved because we are at the end of major doctor visits needed to make a plan for Brandon's spine. I am ready for a break from doctors. Brandon does have two more issues identified in the MRIs, but the conditions are not urgent and we will continue to monitor.
Through all of this Brandon has remained focused on the things he loves. Last weekend his band played at the Barn. All 12 of members. He just loves saying he is in a band and he loves singing on some Beatles songs. I am grateful to a very patient Phil Montford for turning time with Brandon into helping Brandon and his friends form a band, learn how to play instruments, learn how to play together and helping the band book gigs (along with Brandon's roommate Nathan). These are all things that make Brandon happy. So glad he has this experience.
A little on me. While Brandon was being taken back to have his double MRIs under anesthesia the nurses were talking to me about what they were going to do during the exam. But I was feeling pretty awful and just wanted to sit down. In fact, I felt like I was going to faint. I didn't say anything to anyone. It has not been the first time in the last year I have had this feeling. This felt like something related to the heart. I have been wearing my iWatch for months tracking my steps (going for 10,000 a day). I looked up the heart feature on the iWatch and saw at the time I felt faint that my heart rate was 43. Too low. This can happen with someone stressed from having their kid in the hospital. When I looked closer it looked that the low heart rate has been happening a lot. I just happened to have a check up doctor appointment a few weeks ago. The doctor decided to do an EKG in the office. Sure enough it shows bradycardia (low heart rate drop). It may be nothing but they referred me to a heart specialist who also said it might be nothing but better safe than sorry. So here I go for tests this week. I am telling you this because I see many of my mom friends going through their own health crisis in the last year. Cancer, heart issues, surgeries, the list goes on. For moms, nothing can be worse. We still want and perhaps need to care for our adult children even if our kids are living in their own homes. But worse, it brings to reality that I may not outlive my son. That is my biggest fear and one I often hear from other families. I am trying very hard to set up a forever plan for Brandon, but the plan always runs better with help from me. Always a work in progress and desire for Brandon to live a good life - forever. More later.
Leah
1 comment:
Take care of your self, wonderful devoted and loving mother you are. So glad to hear there is a plan. Perhaps your body knew that now there might be time to attend to yourself. Sending love and always care.
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