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.