I hope everyone has a great Happy Mothers Day this weekend. I know mine will be with Brandon at the his performance with "We are the Chorus" doing the musical "Oklahoma". I am told Brandon has a speaking/singing part this time after years of going every Monday. He has been kind of shy with the group but loves to go. He announced that he if going to sing a song and has a speaking part in the musical. He will be using his IPad to talk. He is excited and cant stop talking about it. He also cant stop talking about Paul McCartney coming to Austin for ACL this year for both weekends in October. And Paul McCartney is messing with our schedule for the next few months.
This is probably not my best mothers day because once again I am hit with some hard realities of Brandon's conditions. It is always a process for me when I get new information. It starts with shock, which I am in at the moment of writing this. Then is goes to depression. Depression that I never had before I had a special needs child but can raise it ugly head during this stage of processing information. Then I go into research mode, there is usually some anger in there from some physician not telling me information sooner, or not giving me the complete information. Then it will end with acceptance, letting it go and figuring out the best way to make it through the new medical crisis. This one is no different.
We visited with three of Brandon's crucial doctors this week to see where Brandon's progress is concerning his osteoporosis, scoliosis and dyspagia. To catch everyone back up, Brandon he has been on a series of supplements and diet to help with absorbing vitamin D3 and he has been taking a mega dose vitamin D3. He has been lifting weights, doing more exercise and horseback riding. He has lost about 5 pounds. He also is taking Forteo since November to rebuild bone.
Our Integrative Medicine physician visit - At the visit with Brandon's integrative medicine physician we went over Brandon's progress and results of recent blood work. Brandon blood work results looks great. His vitamin D results now show in the normal range, but the low normal range. Apparently even after his diet change, supplements and added mega dose of vitamin D the results still seem too low. So Brandon will continue the mega dose of vitamin D for another few months and we will recheck the levels later in the summer. As mention previously, this physician is recommending stopping the Forteo at 1 year which will be November. She is suggesting that the surgery be in Sept to allow 2 months of recovery using Forteo which will help build bone and shorten the recovery time before we stop Forteo.
Gastroenterologist - Brandon has been seeing his gastroenterologist since he was 7. He has been on a clinical trial for a drug "propolsid" for many years. His first gastroenterologist prescribed a larger dose of this drug after Brandon was having severe oxygen saturation rates when he was young. He spend a few years in and out of the hospital, tons of tests, many specialty visits and lots of durable medical equipment hooked up to Brandon prior to this drug. The drug lets fluid pass through the body, including salvia, food, water, etc. Brandon's trunk of his body was so weak he could not get fluid to pass and would fill up his airway with fluid, dropping his saturation rates. Within two weeks of adding a large does of this drug his airway issues completely went away. When Brandon was 9, the drug was removed by the FDA for use in the USA. After stopping the drug within 6 months, Brandon aspirated on some food at school, lost consciousness, called 911, had the Heimlich, damage the airway and ended up in the hospital. He had more tests where we found that once again fluids were not moving through his body. He had to eat food only though his gtube for the next year while he relearned to swallow and recover. We traveled to Mexico to get the propolsid which in Mexico was over the counter. We did that for a few years until the drug was approved for a clinical trial. Brandon was approved for the clinical trial and has taken it ever since. But he is now 25 and we are all wondering its benefits. So we agreed that we will stop the drug this summer, monitor to see if he has any airway issues and decide before surgery if he needs to continue on the clinical trial. I am a little nervous about this, but open to removing any drugs from Brandon's routine not needed. I also talked to the doctor about removing the gtube. Brandon is eating through the mouth all meals and getting his liquid medicines through the mouth. The doctor was worried about the upcoming surgery and whether we will need it for medications and food. So for now it stays in.
Spine surgeon - Friday we met with Brandon's spine surgeon to talk about Brandon's surgery, what he recommends and what surgery he will need. We have seen this surgeon before and he wanted to do surgery several years ago. I think it is good we didn't because Brandon's bone health was even worse then. But the news was a little more real this time. Brandon's curve is still in the 54% range, but he is having worse spinal collapse as a result of the scoliosis. So we discussed what Brandon's options are for now and the future. Brandon can continue his path we are doing now and not do surgery, but based on the surgeons experience with other "Brandon's" who are multiply complex with conditions competing with one another, the spine will continue to collapse, nerves will be damaged going into the legs, and use of his legs may be impacted the longer it continues. What is the timing of this. Not one knows for sure but he has gotten worse. I know - it sounds awful. The other option is to move forward with the surgery. But due to the scoliosis, Brandon is at higher risk of complications such as breaks during the surgery. He will need to have a rod placed from t11 down to the spine (that is their guess before more tests). However, even if everything goes well during surgery and no bones break, the pressure from the fused portion of the back can place strain on the upper portion of the back and he could have breaks in the upper portion of the back in the future. I am amazed based on his description of the back that Brandon doesn't have more back pain, but I know Brandon's pain threshold is so high and maybe he has learned to live with it. He really did not want to recommend either option to us, but wanted us to know the risks both ways. I don't love either choice and really the goal is to make sure Brandon does not live a life in pain or loose the use of his legs. I also don't want the spine to push against the lungs or heart which will cause even more complications. So yea, a little in shock with the prognosis and treatment options, but even more in shock on Brandon's decline. If Brandon goes forward with the surgery he will be in the hospital for 1 week and will have around 6 weeks for serious recovery and around 6 -9 months for full recovery if all goes well.
Brandon doesn't want to have the surgery before Paul McCartney comes to town and that was all he could talk about in the visit. So we discussed the possibility of having the surgery the week after the first ACL weekend. We already have tickets to see Paul McCartney at ACL and as you can imagine Brandon is a little beyond excited to have Paul here. So we are trying to figure out how to extend for one month. Next step is to do more tests to clearly determine the extent of surgery. More to come.
So, spending a little Brandon time this weekend but also laying a little low as I try to get out of the depression phase of all this new information. Love to you all and more to follow.
A little brightness in here - Elizabeth and Brandon gave me this handmade card for Mother's Day. Elizabeth is amazing at her art and applying it in the real world with Brandon. Love that. Happy Mothers Day everyone.
Leah
