The good and the bad - A Brandon and Leah health update

GOOD NEWS - Several of you have asked about the results of my heart tests.  Good news - the additional tests all came out normal.  I will of course monitor myself and if I have any other issues go for further testing. But for now all is well.  It is a wake up call and I have been concentrating on better health for the future.  

NOT SO GOOD NEWS - I mentioned that Brandon's g-tube site where we removed his Mr. Mic-Key (g-tube) is infected.  It has been for months.  It has continued to get worse everyday.  Brandon has completed his 7th antibiotic and we are all concerned that he shouldn't have anymore antibiotic treatment for fear that he will become resistant to future treatments.  Even after 7 rounds of treatment we are still seeing signs of a major infection.  This weekend the site began bleeding and has continued to bleed.  Because of this, how bad the site looks and the fact that no antibiotics are working, Brandon will have surgery next week to try and clean out the infection.

BAD NEWS - While meeting with Brandon's surgeon (Dr. Meynig) today, we went over possible surgery options that may happen while the surgeon is trying to clean up the site.  It is possible the source of the infections is in the stomach or somewhere internal that may require repair.  It is also possible that Brandon may have a fistula that has the stomach lining attached to the area of the gtube opening.  In the event he has a fistula this will also require surgical repair and is a more extensive operation.  AND we wont know the extent of the surgery until the surgeon can open up the area.  We discussed the options and agreed we just need to try to repair the site as best possible,  It is possible Brandon may require a second surgery if this does not correct his infection.  Brandon is excited to have the surgery because I think he is in pain right now.  I am glad we are finally taking a more aggressive approach to get this healed as I am getting more concerned about the infection.  After the surgery Brandon will require wound care to help the site heal.  He will need to stay in the hospital for a few days.

This was not something we had on the plan but if you have read my blogs the last few years changes happen frequently.  Through all of this I cant say enough great things about Brandon.  He has been so positive and has rarely complained.  I am proud of him for hanging in there through everyone poking, cleaning, applying medication and my crazy "just found a new treatment" attempts.  I want to thank all of my other "tubie" parents, nurse friends and doctor friends for your advice through all of this from all those lovely pictures Brandon let me take.  We could not have made it this far without you.  

I am thinking good thoughts for next week and praying for the best possible outcome. We will keep everyone updated.

More later.
Leah

We have a plan!!!!!

Brandon and I have decided on a plan for his care.

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

Bye Bye Mic-key

When Brandon was born he did not have a suck or swallow reflex.  For 1 year we fed Brandon through a tube we stuck down his throat.  We had therapists coming to the house doing intensive therapy to help Brandon learn how to swallow.  Swallowing is pretty darn important.  If you have a weak or uncoordinated swallow you are at risk of aspiration pneumonia, scaring of the lungs, respiratory issues and lifelong challenges with food.  Our goal in the first year was to try to get Brandon to swallow his own saliva. Pretty basic.  But we also wanted Brandon to take in food through the mouth.  The goal was to avoid inserting a permanent g-tube for feeding.  This is a major struggle for families when making this decision.  It feels like you are giving up on your dreams for your child to eat through the mouth just like every other kid.  It turns out that sticking a tube down Brandon's throat 8 times a day was not the right decision and if I had to do it all over I would have inserted the g-tube much earlier.  By age 1 Brandon weighed 18 pounds and received the diagnosis of "failure to thrive".  It was a life changing (at the time) and tough decision for me to make for Brandon.  But really there was no other choice and we went forward with placement of the g-tube.  In those days 25 years ago, most children had a g-tube placement along with a "fundoplication."  

• What is a fundoplication? Fundoplication is a type of surgery to prevent stomach contents from returning to the esophagus (food tube). This is achieved by wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus. This tightens the lower esophagus so that food and fluid can go down into the stomach but cannot return up to the esophagus to cause symptoms of gastroesophageal reflux disease (GERD). 
• Why does my child need a fundoplication? Fundoplication is recommended for children who have complications or persistent symptoms related to GERD that are not improved with appropriate medical treatment. Symptoms or complications of GERD where fundoplication can be considered include inflammation of the esophagus (esophagitis), failure to grow, recurrent pneumonia or asthma related to GERD, anemia, and narrowing of the esophagus (esophageal stricture).

By the time Brandon had this surgery he had multiple pneumonias. I tell you this because having a fundoplication is a major operation and should not be taken lightly.  Brandon took two weeks in the ICU to recover from the surgery.  After getting the g-tube placed, he began to gain weight and was a different kid from all the nutrition he was receiving.  His g-tube placement was around his first birthday.  We changed from g-tube to a mic-key within the year.  It is much easier to use.   

At age, 4 Brandon and I began working on my property here in Dripping Springs on the weekends trying to prepare for building a house.  We would pick an area to work and cut trees, move rocks, clean up trash and debris.  My favorite place to work on the property was down by a natural swimming hole. Brandon would have a place to lie down or sit up with his toys.  We stayed as long as Brandon would allow.  One weekend I brought our food down by the swimming hole.  I had my water in a bottle with a spout.  I was sitting next to Brandon and he grabbed the water bottle and tried to drink.  This happened several times.  It was scary because he could choke and this was before cell phones.  In a previous weekend I was on the other side of the swimming hole with my back to Brandon pulling weeds.  I stopped hearing sounds, turned around and he was at the bottom of the swimming hole.  I pulled him out and resuscitated him. He was fine and only on the bottom for less than a minute, but I had to take him into the ER to check for aspiration.  These incidents made me realize that Brandon really wanted to eat or drink through the mouth.  It also made me realize that Brandon is at high risk with any water whether through the mouth or if he is sitting in it and we needed to really work on developing a stronger swallow and how to protect the airway.  

Brandon had been doing intensive speech therapy to work on the swallowing issues since birth.  I met with his therapists - the school and our private therapist to determine how we can move to the next step and have Brandon begin to eat through the mouth.  I realized that no one really wanted to take the risk of moving Brandon from 100% dependent on the g-tube for nutrition to a child who could maintain his weight from eating through the mouth.  I talked to Brandon's doctor and asked for his help to find a solution on an inpatient basis where there would be less risk.  Brandon spent 1 month in inpatient re-hab.  IT WAS MISERABLE.  I slept there every night with him in a single bed, worked at the hospital during the day while the therapists spent time trying to work on his skills for swallowing.  On week 4 - SUCCESS.  Brandon was eating a little pudding through the mouth.  FYI the hardest food to swallow is water or liquids because they go down so fast that you cant control the swallow.  Everything Brandon put in his mouth was a pudding consistency.  We continued building Brandon's swallowing abilities.  Around age 8 Brandon was almost eating enough food to sustain his weight and I was thinking in my mind - maybe we can remove the mic-key and Brandon can now eat everything through the mouth.  Granted the diet was still limited to pudding like consistency but we had added more foods. 

THEN I GOT THE CALL.  Brandon's school called.  They told me they called 911 and they were on their way.  Brandon choked. Was unconscious.  EMS beat me there and they pounded on Brandon's chest to revive him.  When I arrived he was up and breathing (yea).  I took him home and I knew something wasn't right.  He had aspirated his food.  For 1 year we had one major step backwards and we had to go back to having all nutrition through the g-tube.  I had an honest conversation with Brandon's gastroenterologist about Brandon's future and whether he would ever be able to eat 100% through his mouth.  He gently told me this was more about quality of life than whether Brandon eats through the mouth or not.  Brandon would tell us what he wants to do.  If he wants to eat more through the mouth then I would have to be okay with the fact that it is was risky.  I could have made the safe decision but I did believe that Brandon should be able to have the food he loves - i.e. cheese and be should able to eat that through the mouth.  The GI doctor was right.  Since then we have alternated food through the g-tube and food in the mouth.  There have been times when Brandon just didn't want to eat any food through the mouth and that was fine. And there were times when he only wanted to eat food through the mouth like everyone else.  

By high school Brandon was eating everything through the mouth and medicines through the mic-key.  AND THEN THERE WAS H1N1.  Brandon lost a lot of weight, was in the hospital for a month and after he recovered he started having uncontrolled seizures.  His senior year in high school the school nurse told me that it was too risky to have Brandon eat through the mouth at school.  Once again we went for 1 more year eating through the mic-key. We concentrated on getting Brandon seizure free.  We finally were able to get the seizures under control and everyone agreed to let Brandon eat through the mouth again.  

Brandon is now 26 and hasn't choked and aspirated in many years.  My goal was before I remove the mic-key, Brandon must go at least 1 year without using the mic-key.  This time we have exceeded that by 1 year.  I have been keeping the mic-key in because it would be helpful in the event Brandon has the spine surgery and refuses to eat.  That is a possibility, but perhaps not a reason to keep the mic-key when the site surrounding it is infected, has been treated multiple times and Brandon seems to be unable to get rid of the infection. 

THE VERDICT IS IN.  Finally after 25 years we are removing the mic-key and will not replace it with another one.  Brandon is beyond happy and I will be so glad to not have to deal with the mic-key site, training people how to use it, changing the mic-key out (it is considered a surgical procedure but many parents replace the mic-key themselves), worrying about it catching on something and popping out (it has happened), not having the right size, manufacturer supply issues, different types of g-tubes, making sure I have the right connectors, constant DME interaction, explaining why Brandon needs the g-tube and why we need the supplies and formula when he does take some food by the mouth and lastly the fear of getting use to the ease of using the g-tube versus making a meal that Brandon can eat with no hard solid foods or other difficult to swallow foods.

In the last two days I was able to get Brandon in to see his integrative medicine doctor, his gastroenterologist and now his new surgeon for his type of issue.  The integrative medicine doctor is giving Brandon turmeric and probiotics in a powder form to help with swelling, pull out the infection as best we can and dry up the site.  I will let you know how that works.  After 10 days on antibiotics for the 3rd time, Brandon still has the infection.  She swabbed the infection so we can decide if there will need to be additional treatment.  The surgeon is hoping we can just pull the g-tube out of the site, but it preparing for the possibility there will have to be cleanup from the infection and the site.  And if all goes as planned we can say goodbye to Mic-Key forever.  It will probably take two weeks for all the preparation.  Brandon and I are already saying good-bye to Mic-Key.  

The Mayo - A week of learning

In my last post I told you that we have decided to go to the Mayo Clinic in Rochester Minnesota to get help making a decision on the best treatment for Brandon's scoliosis and osteoporosis.  We have two very different recommendations for surgery, both of which are major surgeries for Brandon to repair his scoliosis.  

Since my last post the Mayo has been incredibly helpful.  They called and gave me options for dates to come to Rochester Minnesota and I was a little shocked that the dates offered were so soon.  I was also surprised that we will be in Minnesota for at least 1 week for assessments.  The Mayo has called almost daily since the United medical director called and made the referral.  The best call was the Friday before we left when a patient relations representative checked to see when we are arriving, what hotel we are staying in and then told us she would meet us in the lobby and take us to our first appointment.  I have to say that was a big relief and one less thing I have to deal with - finding the office for the first appointment at 6:45 am in this mass of building called the Mayo Clinic.  Two weeks ago I drove all over Austin getting medical records and Cd's with radiology films.  I finished sending medical records to the Mayo.  But I had another conversation with the Mayo before we left about records I didn't include.  They asked for me to bring them.  I am not packing another 15 pounds of records so I scanned more documents.  There really isn't anything left that is not now in a PDF file.  When we got to the Mayo they still asked me to walk around with some of the records in hard copy just to make sure everyone had what they needed.  We are a long way to go in this country to have electronic medical records.  It makes it much harder for people like me and Brandon trying to have as much info available for better health decisions and better outcomes.   

Brandon and I left Sunday evening for the direct flight to Minneapolis.  Minneapolis is about 1 1/2 hours from the Mayo which is located in Rochester.  Luckily my friend Carrie Coleman just happened to be on the same flight and we booked our seats together.  She helped us make it to our shuttle to Rochester.  We didn't get to our hotel (Grand Kahler) until 1:00 am and then to bed by 1:30 am.  This was good because Brandon was only supposed to get 4 hours of sleep for the EEG they wanted to perform the next morning.  That also meant I only had 4 hours of sleep.  Rochester just had is first major snow and we came in while it was snowing.  Really it hasn't stopped since we have been here and it hasn't been above 32 so the snow is staying.  The Grand Kahler has an underground walkway so we don't have to walk out in the cold and all the buildings connect.   The hotel is a great location but probably could use a little upgrading.  There are new hotels being build all around the Mayo.  

Monday we met Brandon's new best friend Christel (Mayo assigned us a patient representative from the UHG Spine Program) in the lobby of our hotel at 6:45 am.  The first day was a day of meeting with our lead internal medicine physician who will put an entire plan together for Brandon concerning his spine surgery, scoliosis and genetics.  Then Brandon had a bone density test, spine imaging and an EEG. Brandon has developed an infection at his gtube site so there was a little extra time figuring out treatment.  It was a long day but ended around 3:00.  Brandon and I went to eat and then to bed early. 

Brandon getting ready for the EEG and with his new BFF Christel our patient representative 

who took us to all the visits.   

THE BONES

Tuesday was all about the bones.  But first we had blood tests and Brandon was on a strict diet for the blood tests the night before.  After the blood tests we had breakfast and then met with the endocrinologist to go over the results of the done density tests.  The good news is the highest number for Brandon's bone density went down to -2.8 (the high previously began was -3.7).  Still osteoporosis, but much better results.  The other good news is the lumbar spine overall score is 1.8.  Major progress.  The doctor would like Brandon's highest score to be below 2 before having surgery.  The other news is that there is no treatment approved for men, especially men below age 50 for bone growth beyond 2 years total.  That means once we have completed forteo we will have to move to  different stabilizing treatment. The doctor recommends prolia 60 mg subcutaneous injection twice a year after forteo.  Prolia will help him gain further bone density slowly over time more than Reclast.  If Brandon doesn't have surgery within the period of Brandon using forteo (which is preferred), then surgery cannot be performed until after 6 month from an injection of Prolia.  They are also watching new drugs soon to be approved, but have not seen a change in allowing more than 2 years of treatment.  

Our second visit was with an integral medicine doctor specializing in eastern medicine.  We both really liked her.  She wanted to check for drug interactions with some of the medications and supplements Brandon is using.  The main recommendation for Brandon is to stop using Vega his supplement we use as a base and change to active probiotics.  Here are her recommendations:

I recommend switching to whole foods, whenever possible.

In 2018 the Clean Label Project, a nonprofit organization that examines labeling safety issues, tested 134 protein powders from 52 top-selling brands. They found that virtually all of the 134 products tested contained detectable levels of at least one heavy metal and 55 percent tested positive for BPA. Overall, plant based products fared worse than whey based products. This included the Vega brand, which was ranked poorly and was listed amongst the 5 worst brands. A 2010 study by Consumer Reports of 15 products found arsenic, cadmium, lead and/or mercury in samples of all the 15 powders tested, a few in excess of the maximum USP acceptable intake.  

Regarding Multivitamin Supplements - The worst brands and products  in the Clean Label study: Garden of Life, Organic Shake & Meal Replacement Chocolate Cacao Raw Organic Meal; Nature’s Best, Isopure Creamy Vanilla Zero Carb; Quest, Chocolate Milkshake Protein Powder;

360Cut, Performance Supplements 360PRO Whey Chocolate Silk Premium Whey Protein; Vega, Sport Plant-Based Vanilla Performance Protein.

 

Best overall (but still tested positive for contaminants):

Pure Protein Vanilla Cream 100% WheyPerformix Pro Whey Sabor Vanilla Protein with Amino BeadsBodyFortress Super Advanced Vanilla 100% Whey Protein BioChem Vanilla 100% Whey ProteinPuori PW1 Vanilla Pure Whey Protein

 

Regarding probiotics: Overall, I highly recommend probiotics obtained form whole foods, such as kefir (Nancy's kefir is one example), pickles, sauerkraut, kimchi, kombucha tea, or miso.  

There can be substantial variability between probiotic supplement products based on manufacturing methods, storage, and species-related or strain-related differences. Generally, look for active or live cultures on a label, with colonies in the 10-20 billions. The best supporting evidence, generally speaking, is for Saccharomyces boulardii or Lactobacillus GG. For functional constipation Lactobacillus reuteri DSM 17938 () - 200 million colony-forming units daily for adults can be considered. For irritable bowel syndrome, Bifidobacterium infantis 100 million live bacteria daily can be considered.

 

I hope that helps anyone on supplements or probiotics.  

Brandon in the spine clinic

THE SPINE

Wednesday was all about the spine.  We saw the spine surgeon first.  Some new information.  The surgeon compared spine xrays from 2007, 2014 and to the current xray done Monday.  When you look at these comparisons it appears that the 2007 and 2018 xrays are similar (49 and 51%).  The 2014 xray may have been in a different position than the others.  Basically it is very hard to confirm that Brandon has had significant decline.  In addition, the surgeon here believes it is possible Brandon has had a fracture at the upper portion of the spine and probably due to osteoporosis.  It is hard to see on the film, but two physicians here believe it is possible.  They are recommending that an MRI be performed on the entire spine so we can clearly see if there is a fracture in this area or any other fractures.  If there is a fracture Brandon's surgery will need to have a rod placed in Brandon's spine above the fracture and all the way to the pelvis if or when we move forward with surgery.  The surgeon here believes that the plan from Dr Viere in Dallas is the better or the two options.  He did not agree with the surgeon in Houston's recommendation.  Here is what I gathered from the conversations:

1. Dr Viere's (the Dallas surgeon) approach for surgery more closely aligns with the Mayo's recommendation. He was the one with the more extensive surgery. However, if Brandon does have a fracture at the upper part of the spine a rod may need to go down almost the entire spine and fused to the pelvis. Even more extensive than the one recommended by Dr Viere.
2. They do not believe we should move forward with surgery unless we can confirm that Brandon's scoliosis is declining. Based on various x-rays it is unclear. They recommend following his back using the same machines for x-rays and the same approach to take the x-rays (i.e. hands to the side, hands above, standing straight, etc).
3. Surgery is not imminent unless we see a decline (that would include any fractures).
4. They recommend that Brandon get an MRI of the spine (also Dr Vere's recommendation) but different from Dr. Viere they want the MRI for the complete spine and determine if there is fracture at the upper part of the spine or any other part of the spine. They are suggesting the MRI be done within 1 month of this appointment. I will  ask Dr. Viere to do these in Dallas.  
5. Brandon has scattered degenerative arthritis throughout the spine and abnormalities in the hips. This appears to be normal for Brandon due to his osteoporosis, but not normal for a healthy young man of his age. I will ask them to continue to monitor the hips.
6. Brandon then saw an OT and a physical medicine doctor who recommended Brandon have physical therapy to work with Brandon's lower extremities which will support the spine after surgery. Brandon's legs, feet, etc are spastic and need more flexibility. They have recommended no more than 10 pounds for lifting, fall prevention since it appears Brandon has had multiple fractures, and a few other precautions for him to remember.  In  addition, they recommend light weight lifting and walking 30 to 40 minutes 3 days a week.  

That evening we had to have some better food - gluten free, almond milk etc.  So we ventured out thanks to Uber and went to the local People's Food Co-op.  Loved it.  It is similar to a small Whole Foods.  When we left it was snowing again.  

Neurology

Thursday was all about neurology and genetics.  Brandon was fortunate enough to meet with neurology for this visit and go over his medicines and diagnosis.  The neurologist agreed to Brandon's medicine but also made a suggestion of a new medicine to consider in the event we decide to move.  In addition, he ordered a new more defined MRI of the brain.  We will do this Friday morning before we leave here.  

Genetics

This was the longest appointment because we have so many tests already done for review.  I think it is the consensus from all the doctors that Brandon has an underlying genetic condition impacting the bones and vitamin D absorption.  But none of the obvious ones identified in his chart can explain his condition.  They are running 1 additional genetic test, but they are also going to contact Baylor and download Brandon's complete genome report.  In addition, Brandon signed up for a research study for patients like Brandon who have not found a diagnosis through any other method (genetic, metabolic, etc).  The study is looking for more ways to diagnose patients through whole genome sequencing.  They will continue to work on Brandon's case until they find a diagnosis.  This is paid through the Mayo research funding and could last for years.  

Ready to Come Home and Brandon's Birthday

Brandon is a little homesick and ready to come home, but the only thing keeping him from really complaining loudly is that we have scheduled to meet with another Beatles fan we connected with who has met 3 of the Beatles.  He is looking forward to that tomorrow night in Minneapolis.  We come back to Texas on Saturday staying with Carrie tomorrow night.  Then Brandon turns 26 on Sunday.  Happy Birthday Buddy.  

This says it all for the week.  

The Mayo

Lastly, I cant thank the Mayo team here enough for all the help they have provided this week.  Squeezing appointments in for the week, meeting us and taking us to each appointment, finding the right physicians to meet with during our time here so we can make better decisions.  Everyone has been very helpful, know their stuff, made sure we don't have any holdups and going that extra mile.  I feel like we have a good plan. I am much less stressed than I was before I came.  I also feel like I have a team here to help in case we get stuck again.  All round great customer experience.  

It was a memorable this week as the nation celebrates the life of George Bush.  George Bush and Barbara Bush were major supporters of the Mayo Clinic.  In fact, Barbara Bush was on their board.  Many great stories about them this week here and a small memorial on one of the floors where Brandon had many visits.  This added to the fact that George Bush signed the bill allowing people with disabilities equal rights so people with disabilities could have the same education and work at jobs equal to their peers.  He was a man who devoted his life to public service and Brandon has benefited from his efforts.  

Mayo Clinic statement concerning Former President George Bush

That is all for now.  Thanks everyone for supporting us as we stayed here at the Mayo.  Looking forward to being back in warm Texas. 

Back to the Back - the quest for the best outcome

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

The All Good News Post

Brandon and I had a nice reprieve of not thinking about or seeing doctors for  few weeks thanks to Sir Paul McCartney.  I am just giving a short overview of our day to feel like rock stars.  I wrote an email to ask whomever would listen to give Brandon the opportunity to meet Paul McCartney.  Many people gave me suggestions as I sent this email out on who I should contact and I have to give thanks to each of you who lobbied for Brandon, giving me suggestions and pointing me in the right direction.  The email ended up being sent to Paul's company with a "not promising anything but at least getting it in the right place".  The news that Brandon was finally going to meet Paul came when we probably needed the most - at the airport coming back from our last of all the specialist's appointments.  I was so tired I just wanted to get on the plane so I could take a nap.  Brandon had already taken a nap in the airport and the doctor's office.  Thanks to Peggy for driving us a around that day.  At the airport I decided to look over my email when I saw an email from Paul's charity offering Brandon a private meet and greet with Sir Paul at ACL.  When I told Brandon he started squealing and saying he could not believe he was going to meet Paul McCartney.  That woke us up to get on the plane and home.  

Brandon at the airport

We received an email the next week explaining the location of the tickets and packets for backstage passes.  The team offered back stage passes for Rush Evans (Off the Beatle Path) as well who is the biggest Beatles fan as Brandon. Tony who was with is for the evening also received backstage passes.  It was good to have both of them there because backstage can be a little challenging for person who cant see down very well and is not great walking on uneven surfaces.  But those challenges did not slow down Brandon.  The day before the event Michele from Paul's team (who has been with him 28 years) contacted us about how we were getting to the concert, what time etc.  After talking to her and explaining we may have to use the wheelchair to get Brandon around ACL (if you have gone to ACL you know that is a little tricky).  She offered to have a car sent for us and to drive us right to the Paul McCartney backstage area.  It was a relief for me.  The day of the concert the car showed up to pick us up with Albert our driver (sweet guy) who had our passes and extra tickets we gave to Brandon's aides.  He drove us right to the area where Paul was set up.  

Brandon and Rush

We had shirts made here in Dripping Springs for Brandon by Emily Heckmann Konkle .  Love them.  

 Michele greeted us and showed us to the backstage AC lounge where there were drinks and snacks.  We wanted to go out front to see David Byrne.  The staff helped us through the maze and Brandon was able to sit in the disability section right up front.  Great show.  We went back to the lounge after his set.  Rush was able to meet many of the musicians hanging out in the back, but Brandon, Tony and I hung in the lounge in the AC.  It was pretty hot and I wanted to preserve some of Brandon's energy.  We met the whole horn section who were so nice to Brandon asking him about his love of Paul and the Beatles.  During the show they all turned to him and gave him the thumbs up and one of them came up to check to see if Brandon was loving the show - he was.  

The horn section 

About 15 minutes before Paul was about to perform they took everyone back stage to a balcony on stage right above the band.  It was the most amazing view of the show and looking out at 80,000 Austin fans cheering on Paul.  They took Brandon and me to a private area to meeting Paul.  Brandon had a ukulele that our friend Scott Fredrick put the Egypt Station art on it and Brandon handed it to Paul.  Paul immediately started playing the song he wrote "Dance Tonight" on the ukulele and singing it.  Brandon and I danced to it.

When he was done Brandon told him that he "has been listening to his music all his life".  He also told him that he listens to the Beatles radio show on Sirius XM everyday.  Paul looked at me and I said he likes to hear the stories that Paul and the others talk about on the show.  Paul said to Brandon well I have a lot of stories I am going to tell tonight.  Brandon smiled.  Brandon then told Paul that his music makes him happy.  Lots of hugs.  Brandon asked Paul why he added the horn section and Paul said - I thought it would be nice to have something different on this tour.  Brandon was excited.  Then we took pictures.  Lots of hugs.  Someone handed Brandon a set list and we headed to the balcony.  It took both Michele and me helping to get Brandon all the way up the stairs but Brandon wasn't going to let that make him miss the concert.  On the balcony there was one chair for Brandon so he could sit when he needed to.  He sat a few times that night but he tried to stand for almost the whole concert over 2 hours.  Brandon has been showing signs that his back is hurting and standing is one that we can tell put pressure on the back.  But he didn't want to miss a thing.

The show was fabulous with Paul singing a mix of Beatles, wings and his new album.  When the show ended Brandon almost fell over the side trying to waive at Paul as he walked under the balcony.  Then the band came out for an encore and as they were leaving for the final time Paul stopped and pointed at Brandon then blew him a big kiss.  Brandon was beside himself and almost frozen with excitement.

 

A rock star kind of night.  Paul's staff couldn't have been nicer. Paul McCartney talked directly to Brandon and interacted with him and Brandon was very engaged.  I think we will have some great pictures from Paul's photographer.  We should be receiving soon (if we ever get mail in he mailbox - been flooded out here so we haven't received mail for at least  week).

Brandon is still on the Paul high and walking around saying Paul McCartney about every 10 minutes.  What a great guy Sir Paul is.  Our night to live like a rock star is something Brandon and I will never forgot for many reasons.  I will leave you with one pretty magical moment of the night from our view.  Paul singing Hey Jude with all of Austin from Rush's video with over 95,000 views.  It is pretty awesome.  Thank you Paul McCartney for being so kind to my son and making his dream of meeting you come true.  

Austin City Limits Paul McCartney singing Hey Jude

I am still trying to be on that Paul high, but I also have been working very hard to better understand the recommendations for Brandon as we receive more information concerning his treatment.  AND there is good news as this is only a good news post.

• Brandon cleared all the heart tests.  His heart can take a very long surgery
• We found out this week that he is not predisposed to blood clots via some genetic tests that we have received and that is important for this surgery.   
• We also received good news on Brandon's foot.  The structure is still good, he does have arthritis and osteoporosis in the foot but that is to be expected given his history and the fact that the foot has been operated on.  We also found an Austin doctor to see in the event he has any other feet issues. 
• In the last two weeks I have talked to the two scoliosis surgeons we are considering for Brandon's surgery.  I haven't made a final decision but I have ruled out the doctor in Austin solely because the other two surgeons have done many more surgeries on this complex population and seem to really understand what will be needed moving forward.  Based on my extensive conversations with the surgeons in Dallas and Houston I better understand why they both have different plans.  I am leaning towards one surgeon but am still reviewing their recommendations.  I am really relived that we are closer to making a decision for treatment.  
• We have received a new set of genomic information (133 pages) that I am reviewing now that has a great deal of information both positive and some explain some of Brandon's bone and spine issues.  More on this in the next post.  Trying to keep it positive here.   
• We are changing Brandon's medications slightly based on our visit with Dr. Sharen Hausman- Cohen (Brandon's integral medicine doctor) and his neurologist.  Brandon seems to be doing very well on the supplements and the CBD oil.  

That is enough for now.  I will go over the options for surgery and hoping that if any of you are trying to choose options for you or your loved one that it helps a little.  

Lastly - as Brandon says - All you Need is Love.  

Thanks to all of you that followed us as we were meeting Paul and the positive thoughts.  I read each message to Brandon and he loved them.  More later.  

Leah