Vanderbilt

Nashville.  Who knew? 

The four day trip there and back was informative, fun, and somewhat overwhelming.

Vanderbilt is beautiful!  We visited both the Adult Heart and Vascular side as well as the Children's hospital.  By far the most organized place we have been and friendly.  We truly got a sense that patients were why careproviders were there which was nice after ten hours in the car.  We also did some sightseeing and saw Nashville's full scale replica of the Parthenon complete with Athena so huge that Houlder and Will looked like minny mites standing next to her. 

http://www.nashville.gov/parthenon/

We also went to the Frist Center and saw a thorough and amazing Andy Warhol exhibit.  No matter what folks think of him, just seeing Keith Richards in a photo from his late teens or early 20's before the ravages of his rock-n-roll life was worth the entire exhibit.  I never would have thought Richards was such a sweet baby faced kid.

http://www.fristcenter.org/site/default.aspx

On Tuesday Houlder went to the adult side and had autonomic function testing. 


http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

On Wednesday we met the pediatric autonomic doctor.  He was caring and smart. 

Unfortunately, despite a bizallion phone calls and emails and physical requests, all Houlder's paperwork was not there.  We had every test result up to about a week before we went minus tilt table.  I had been unable to get those local results the day of the test or even order them a day later.  I had Vanderbilt request them as well which we also signed off on.  It should not take an act of God.

So, his diagnosis is relatively certain but waiting for more results.  We also learned that at Vandy, they screen some of tests to rule out adrenal tumors differently than they do here.  The doctor still needs to find out if one quality was tested.  According to him, without it, the tumor cannot be ruled out.  The tumor is non-cancerous and could be removed.  It is rare but right now we are not dealing with the average bear.

I am trying to follow up on the test results and what not.  But, summer makes some things tougher than they should be.

We are still waiting for some blood work Vanderbilt did, but it looks like Houlder has something called POTs.  Doctor there is calling it orthostatic intolerance while waiting for blood work and tilt results.  Doctor said that everything in file pointed to POTs.  In true form, Houlder's test results flip flopped while there.  At home, his heart rate has been an issue but not blood pressure.  There, blood pressure was issue.  Frankly, it does not matter in that treatment is same and expected healing time is the same.

This site explains autonomic dysfunction well:

http://www.dinet.org/index.htm

Houlder is not getting enough blood circulating in his brain.  When he stands, the blood goes to his feet and not enough to his brain.  It most likely has been going on since last fall when he started having some troubles concentrating, but we ignored them.  In fact many symptoms may have been there but he just kept functioning.  The headache in January was severe enough that it captured him.  While he has been released from the constant grip of the headache, too much up and down motion and activity give him one fairly quickly.

Fortunately there are medicines to try to treat this.  He has been on one for a bit now.  It may be what helped reduce headache issue. 

Unfortunately, the doctor felt that it will be at least 6 months to a year before we notice improvement and will likely take 3-4 years for him to improve enough to return to his life.  Pretty much encompasses high school.

The upside is that he will return to to himself. 

The thing that we have spent the last several days trying to get our brain around is what it will look like. 

Another Collegiate family has had to deal with this for over 5 years.  They met Houlder and I for lunch on Friday.  The mom said that she told folks that it was like having the worst hang over of your life, every day --  all day long.  Doesn't sound too groovy!

In a day he may have one good hour but often times not.  He is himself -- constantly trying.  He has temporary memory issues and concentration issues.  School is looking less possible.  A sweet friend came over the other day to try to teach Houlder some trig; it was a bit of a struggle.  Poor friend had to keep repeating the problem over and over.  Yesterday when Houlder went and saw Harry Potter with a friend, during the movie the friend had to wake him up.  He gets tired and just conks out.

While we were gone, three families who took our other children had to endure a swim meet with a lightening delay keeping them up until 1am.  Folks took photos and texted them to us as we headed to Nashville.  Our friends have been great.  Sara took care of the kids once they returned home Tuesday evening.  Porter does not remember all the hours Sara took care of him because he was so little.  He was a bit of handful asking me on the phone who was this woman who kept putting him in time out.  The perfect young woman, dude. 

For now, we need to meet with Collegiate and determine what -- if anything -- Houlder can do this fall.  We hope to take it one semester at a time.  We cannot fathom another way.  If there were, we would be trying it.  I know lots of parents out there who go to school a second time through their kids, but I am not smart enough to do Houlder's math!  He will be taking the road less taken but hopefully not for 3-4 years.  We are praying for a return to normal sooner than later.

Tonight is the final swim meet of the summer season.  Houlder will get to swim his beloved breast stroke.  He has not practiced, because it wipes him out.  He cannot dive off the block -- afraid of him passing out.  But, it will be great; being in the water even briefly brings him joy.  The opposing team's head coach is one of Collegiate's swim coaches.  He is letting Houlder start in the water.  The kindness of others still amazes me, and it is what we are trying to focus on.  It is Frazer's final meet of the season.  He has done shockingly well.  Still no Phelps in the pool, but it is nothing short of unbelievable compared to last year.  He has even managed some place ribbons which is feat he has not before due to the limited nature of novice male swimmers in the upper ages.  Dell has had a great season and hopes to hit a triple tonight.  It is a long shot but one he would love to see happen.  And sassy P-Bear is the first 6 year old mite in our family to qualify for champs.  The kid whizzes through the lane cracking us up the entire time.  He is not a baby anymore.  But, at SRA there are lots of kids qualifying for champs.  Porter just gets a Q after his name and the glory of knowing he did that and no one -- not even the uber god-like big brother did that. 
 
With school activities starting in four weeks, we will embrace what is left of summer.  Leave the doctors alone for now and enjoy some of that old SRA magic.