Tuesday, September 10, 2013

Today truly is a transition day for Brandon.  I knew the day would come, but I was hoping to keep putting this day off until later.  Always a wise choice.  Brandon has been having some health issues this week and last week.  I wasn't exactly sure what was going on with him except that he was exhausted, possibly having seizures, then a sore throat, chest congestion, fever - oh he might have a cold.  Okay, normally I would wait this out, but I am leaving for a trip and don't want to leave Brandon headed to pneumonia.  So, I called his primary care doctor and insisted we come in. 

I love Brandon's primary care doctor.  She has been with us through H1N1, foot surgeries and referrals to Scottish rite, seizure activity for three years, coordinating with all his specialists, calling his specialist when things don't look quite right, calling us during hospital stays, calling me on weekends, nights, talking me through treatments, the list goes on.  Brandon's primary care physician is Dr. Rebecca Mouser.  But she is a pediatrician.  Brandon is now 20 and in a few months will be 21.  We have been discussing transitioning Brandon to an adult doctor, but I was hoping if I didn't bring it up, I could put it off one more visit.  We went in today for our last visit with Dr Mouser.  She came up with a plan of care like she always does for Brandon and an emergency plan of care while I am gone.  AND we decided on a new adult doctor.  I am very, very lucky that I have commercial insurance for Brandon on top of Medicaid.  Medicaid always pays last and it makes it much easier to find doctors.  But traditionally Austin Regional Clinic does not take any Medicaid patients.  However, Brandon is primary with my employer United Healthcare and they love United.  So she asked that I interview our next doctor's in the same clinic after I get back and I agreed.  We decided on two possible names and tomorrow I will make appointments.  I cant tell you how much the adult medical world versus the pediatric medical work is very different.  With kids, pediatricians really go the extra mile trying to find the causes, making sure they have checked all possible conditions and coming up with creative treatments when sometimes it is a guess.  But if you have a great pediatrician it is usually right on. 

Brandon's life with physicians started at birth when the pediatrician I selected for Brandon came into my hospital room about 12 hours after Brandon's birth and said "We weren't sure your son has a brain.  But we checked and he does.  We just don't know how much of the brain he has".  This is after Brandon was evaluated at birth with an APGAR of 8.8 (which is really good).  I didn't hear any thing she said after that conversation.  She continued to talk but I couldn't get past those few sentences.  We were not with her very long.  I moved Brandon immediately to another physician.  I decided on a young and new physician with a small practice.  I thought that would be a great move.  But it was also disastrous.  By the time Brandon was 2 he was in the hospital with pneumonia.  This physician came to the hospital room and told me there was nothing else they could do for him.  He almost died.  I got on the phone and called every specialist Brandon has every seen and they all showed up, changed his medication and somehow Brandon made it out of the hospital.  That was when I realized that I needed a great pediatrician.  I choose DR Carol Faget.  She was also with Austin Regional Clinic and was fabulous. We went to Texas Children's and she worked with the specialists there and completely changed Brandon's medication regiment.  After that change, Brandon was rarely in the hospital.  Before the change, we were in the hospital for weeks at a time.  So having a great primary care physician is crucial. 

She is not the only one we are losing.  Brandon pulmonologist is also referring Brandon to an adult specialist and his orthopedic doctor has already dropped him.  He will stay with his neurologist and gastroenterologist for now.  It is also a problem when Brandon does have an emergency.  EMS is very reluctant to take Brandon any longer to the Children's Hospital even though his two specialists practice there.  As we left today, Brandon said he was sad that he would not see Dr. Mouser again.  I told him we will see her, but that she wont be his primary doctor any longer.  I am sure for him he feels very safe with her since she has helped him when he has been very ill.  Last year when I went in, she showed me the volumes of files that she has on Brandon.  I know that he is a great deal of work for a physician and I really have appreciated all the help she has given us the last 12 years.  We will both miss her.   

On to some pleasant news.  One of Brandon's therapists was in England this summer headed to Ireland and stopped in the Cavern Club in Liverpool.  She bought back Brandon a great Cavern Club hat which he loves. 

Also, one of Brandon's previous employer's went to England and sent this:


From Janet - We got to go to abbey road on our tour today. There is a tradition to write your name on the wall out front of the studios (the famous cross walk is in front of it)  We wrote Brandon's name instead. Hope the picture is clear enough for you to see it and show him!
That was so sweet and Brandon is so excited he is named in London and on top of it, on Abbey Road. 

I also received this from Lara from Italy.  Brandon loved this.  He has an impact around the world.  I love that.


More later
Leah