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.

Tennesse Bound Despite Abated Headache

Dell

In a nut shell, nothing has followed script.

On June 10th, Houlder received botox to stop the headache.  Yes, paid cold hard cash to a neurologist in Bethesda for that gem of a treatment option. 

He came home and felt worse than he had felt -- ever.

Slept almost non-stop for 48 hours. 

Had four cardiac incidents in 12 hours, headed to cardiologist and wore a holter monitor to take 24 hour worth of ekg readings.

8 days later with a still intense headache, he could not help himself and swam a partial practice with SRA.

10 days after Botox, Houlder still had headache but decided to swim back stroke at the meet.  He had not been in pool except for this partial practice.

I am glad to say that he lived. 

And at this meet, William spoke to one of our neighbors who also teaches at Collegiate.  William mentioned how we had been looking to get to Vanderbilt.  Well, her brother-in-law is a caridologist at Vanderbilt.  Vanderbilt which has one of the best and most comprehensive autnomic diagnosis and treatment centers in the country.  A neighbor. 

The night was beautiful. 

Good news. 

Hope.

And five weeks after Frazer's surgery, he swam in two events.  Really, some of the medical stuff has been stupefying.

Frazer shaking hands

A week later, I had an appointment.  The appointment would be in 2 weeks (July 12 and 13 as a start). 

Okay.  Amazing.  Flat out unbelieveable.

Another friend was headed to Mayo in MN and texted to see if she could take anything out for Houlder.  She left with two binders.

A tilt table test administered by an old friend who we were in a babysitting co-op with. 

The world felt small and intimate,  but still no answers.

A friend secured the option of going to California to see a doctor about retro-viral illnesses.  In medical terms, we were looking for zebras.

And in the mean time, the headache has abated.  It returns multiple times a day.  He often almost passes out, but he has been to two more swim practices and seen the doctor at UVA again and is having an MRI on Wednesday. 

Vanderbilt has called twice to inquire and has read his binder.  Today they called to move his appointment ahead one day to add in more testing before the meeting with the doctor.

Mayo friend called.  Doctors say just go through ER.

Whacked out medical system.

I think we can put the 10,000 lakes on hold and the Commodores are looking good.


http://www.youtube.com/watch?v=HIRGNzVIz6Y

Porter

 

 

solipsism

Frazer getting ready to swim breaststroke.

Solipsism.

What’s real? 

Do I know?

Writing this blog earnestly began as a means of documenting the work Frazer and I did together homeschooling.  It was a useful, private tool which I only shared with a few family members and friends.  When Frazer was hospitalized in January, we were blessed with caring hearts and friendly concerns.  The blog was a natural extension of how to communicate efficiently with friends. 

It morphed. 

Inspired by some other friends who blog publicly, I opened the privacy controls and posted on Facebook. 

I let go.

And I found that when I sat in the hospital room at night, thoughtful kind responses held me.  Isolated but not alone, friends from long ago and across the country and over the oceans connected electronically.  

It was difficult to grasp.

Dell's graduation, June 9, 2011

I would read my posts and cringe with the verb tense errors and spelling errors and poor proof reading.  My sentiments were released and available for consumption, and I had not had the energy or presence of mind to think longer or better or clearer.

That anyone even read the blog is a tremendous testament to my kids.

A nagging sense of creating my own private Idaho kept rising. 

http://www.youtube.com/watch?v=n7t7cGwN7_0

An inner world in which I could not escape the the medical world and could no longer define the boundaries of my angst.  A world in which I would write lists of things to do and stop mid-way to care for someone or research more or lately just stare into space. 

I began a blog about solipsism.  Was I creating reality that no one else saw?

Porter mite party 2011

Dell during Frazer and Porter's fencing feista!

These months of writing and being with the mystery of what is going on with Houlder has helped me control knee-jerk responses and try to frame what we are living.  I have tried to avoid exisitential rants, pity parties and full-metal jacket scream fests.

But, is it True?

I have been wanting to write about this idea but shied away when David Brooks,’ with his crisp excellent writing and somehow radically moderate ideas, wrote about the dynamic nature of our country -- democracy and republic -- in the The Politics of Solipsism.

http://www.nytimes.com/2011/05/06/opinion/06brooks.html

How could I even begin to discuss this grist mill when he was discussing truly  meaty and pertinent and well-crafted ideas? Seemed audacious to try.

Persistently that word would jump out at a stop light, while waiting for lab work, during swim practice, or while trying to find patience to deal with a 6 year old.  I sensed that we were living a life somehow separate.

People have been unexpectedly kind.  Unexpectedly generous .  Unexpectedly concerned.

So, why think that our experience is so singular?  Why fluctuate?  Why not ride the wave?

Fear?

Egocentricism? -- that’s what David Foster Wallace and Jonathan Franzen would say.

It feels like McCarthy’s The Road.  An isolated life, trying to get through, to manage parental love and being blind to the community around us and that’s when I know I am in too deep, too far gone to find a realistic view.  I find I have created a world in which I choose what to say and how to say it.  How infinitely selfish that enables me to be. 


The ultimate trap of the adolescent mind seeing life beyond oneself.