"He's got a great heart"

6 weeks old, Nags Head 1995

The first great adventure out of the house with a newborn is flummoxing.  Do I have enough wipes, diapers, changes of clothes, burp clothes, and on and on the list seemed.  The books advised and admonished what a capable, ready-to-handle anything mom would have in her arsenal and like a dolt I charged ahead with everything but the kitchen sink.  Portable electric wipe warmer, three changes of clothes with matching pacifiers -- it does not sound like me.  But that's what I did.

6 weeks, Nags Head 1995

And every day seemed huge.  That outing in the stroller could take a good 20-30 minutes to get myself and the baby together to amble to streets of the Fan.

I remember fixing dinner and feeling like I was a rock star.  Making my bed -- whowee nothing stopping me.

By the fourth kid, I was lucky to toss a diaper in my purse with a small thing of wipes.  Extra outfits -- he could always go in the buff.  And my stress in handling getting out of the house was much less.

Not graceful but functional.

Lately I feel like every day is like those first weeks of newborn life.  Everything feels huge and monumental and that I could screw up at any juncture.   I work on one thing and 30 other things need tending.  Nothing is complete.  Everything is half-assed.  And this with the help and kindness of friends who are cooking and carpooling and in general being really nice.

Hiking in Blue Ridge, October 1995

Two days ago Houlder hit his own wall and we went back in to see Tipton.  Thank God that man is patient and listens to my kid.  He is racking his brain trying to figure this out.  I shared the idea to show up at ER at Mayo.  He thinks maybe but let him contact doctor first.  We shall see.

Yesterday Houlder saw the wonderful doctor who performed Frazer's heart repair.  Houlder has been having racing rates, dizziness, wacky blood pressure and shortness of breath.  We are starting to explore autonomic dysfunction syndromes which seem like a grab bag of nothing and everything.  One nice thing Moskowitz was able to tell us is that Houlder's heart is great.  It is good working order and looks strong.  He also feels like the medicine he responded to at UVA would indicate a vascular component but that yesterday nothing seemed out of whack. 

 

 

November 1995 in christening present from Uncle Randy

 Great.

I think.

Moskowitz, Shaw and Tipton had traded numerous emails before Houlder even showed up.  That is good.  Effective.  But, we netted no answers.

Houlder has been a mess all morning.  Almost passed out in shower.  Heart rate at resting high.  Yet, his heart is good.

December 1995

These weird things may mean something or not.

Kind of like, you may need fourteen diapers if you are out for two hours -- or not.

Logic and preparedness seem at odds and my brain is pitiful in collating the information.

But, my wall is crumbling a bit.  Since my last post, I have heard from folks who can ferret out information on Mayo, on other doctors, on other kids who have had similar issues, on friends who have ideas, and encouragement.

It is humbing.

Thank you.

February 1997, last month as singleton, Claremont

Houlder will be sixteen Tuesday.  Birthdays are always a time of reflection on the experience of birth and a newborn.  Houlder was my first baby.   He has been infinitely easy and happy.  I just wish the collective powers I am meeting and talking to and working with could help make that smile come despite the pain.   

William and I are starting to plan road trips Houlder and I will need to take this summer.  We have decided just go everywhere and try to find the answer.  Someone has got to have it somewhere.  We have been slow and methodical up until this point, but I am ready to go.  Try almost any idea and any therapy and any anything.

Houlder March 1998 with Harrison Weise on Claremont

We will need to find a way to make that work for the other boys and for William.  Nanny?  Childcare?  Camp?  Who knows?  Finishing up his report today and hope to start sending it out to doctor for feedback and then on to whomever will read it and see him.  

I am glad he has a great heart.  That is not news.  It's deciphering the mystery behind the symptoms. 

The wall

Typically a day like today -- the first day of summer swim -- has me giddy with excitement.  Today had the potential to be a double header because it was also the final tee ball game of the season for Porter.

While I could shine on about some of the glimmer, that will be for another post when I can get my head around everything.

In a nutshell, there was a gaff in message taking in our home and Houlder's appointment with the neurologist in Bethesda has been moved to June 10.  It was already feeling like Thursday would be a long wait, and now even longer. 

Once I tried to recover from that I called Mayo Clinic in Minnesota. 

Houlder can get an appointment in 15-18 months.

For those who have mistakenly thought I was keeping it together, this watershed moment proved how fragile my emotions are.  I had to retreat to my room.  Some crying in front of kids is permissible but I was crossing a line.

This sucks.

Needs no explanation.

I emailed all the doctors who can hopefully help us expedite this. 

I don't know if I should go and show up at the ER

For those folks who love Houlder and are pulling for him as much as we are, please speak up of any Mayo connections you may have.

This was a Monday.

Johnny Cash performing Nine Inch Nails:
http://www.youtube.com/watch?v=o22eIJDtKho&playnext=1&list=PL3C3B0E0561E8E9E4

Or Diana Krall:
http://www.youtube.com/watch?v=HjXB69HrvhQ&feature=relmfu

You can eat your mistakes

Friday night, William and I headed to St. Thomas for a crepe making class with other auction winners.  Our able and entertaining guide talked about her year in Lyon, France.  It is difficult to think about France and not think gastrinomic thoughts.  From her descriptions of the tinniest kitchen to the luscious crepe stands, we were ready to give it a go.

Houlder too loved the crepes he had in France last year.  He was bummed this winter when his head ache kept him from the day in French class he missed out on the crepes.

One of the sweet ideas that Susan shared with us is that "You can eat your mistakes."

There must be few places in life when one can say that and not be too terribly disappointed -- I mean a messy ill-presented chocolate and almond crepe remains yummy in the tummy no matter its presentation.

I just wonder how people digest medical gaffs.

Not really gaffs but quitting before the roast is cooked.

UVA's Dr. Rust has said that Houlder does not fit into the parameters of what he studies and has recommended the Mayo Clinic.

I've learned the land of 10,000 lakes has some pretty wicked mosquitoes. 

The doctor that MCV heard from is also at Mayo.  The doctor UVA recommended at Mayo has published an article the other doctor.  They have studied headache and POTS -- postdural othrostatic tarchycardia.

You see, despite our requests for cardiology int he hospital, we were told we did not need it.  But, as you can guess, Houlder has been having racing heart rates, wacky blood pressure and even newer and more fun to sit through and not freak out about -- chest squeezing.

I have shared with the doctors in the hospital that my kid is complaining about his chest squeezing.  My favorite answer, "Well he has not been active.  Maybe standing up is too much." 

An EKG after the incident shows he is fine.

Of course an EKG also said Frazer's heart was fine until the doctor using that ultra radically new technology -- the stethoscope -- heard something.  Then an echocardiogram gave the doctors the answer the EKG could not.

Not that this fact is relevant.

I aspire to avoid cyncism but cannot claim to be frustration-free.

So, if we can avoid an ER visit despite having 3 episodes of chest squeezing yesterday, we go to the cardiac surgeon on Wednesday.

I will call Mayo tomorrow.  I research what it will be like today.  I hope to see both doctors that we were referred to.

I wish that I had thought 10 week summer camps were a great idea instead of SRA because I am not sure what we will do with three other children. 

But, we do love SRA and swimming starts tomorrow.  God willing, four Hudgins boys will spend an afternoon freezing their hinneys off to see their friends and coaches and hold onto a glimmer of normal.

For strength and honor

Cause in the pool, we don't eat mistakes, people eat our bubbles.  Hope we have some doctors out there ready for snack time.

wah -hoo - wah

Most people know that I ardently claim my college years.  My four years on the hill in Gambier, Ohio were pivotal, fun and defining.  Like a peacock I shouted out on FB that VCU coach Shaka Smart chose MY school over Harvard and all the other elite universities.  One of the most important lessons from Kenyon was that I could learn things that did not immediately understand.  I garnered that learning is an act of struggle -- not passively receiving information.  There was this theory in sociology about the emergent I -- that we are always forming.  We are not static.  We are always developing (see GH Mead http://www.iep.utm.edu/mead/).  Howard Sacks spent countless hours trying to help me grasp that concept and ultimately I was able to put my hands around that idea and work with it.  My willingness to cerebally engage in such an idyllic community was easy and made my time on the magic mountain so perfect.  My only job there was to improve and engage my intellect with as little or as much enthusiasm as I could muster.

All of these skills I gained at Kenyon have been precious now as I have tried to educate myself about any and all things that are going on with Frazer and Houlder.  I am glad I knew that learning was a struggle because frankly my tired old brain has had a work out that it has not had in a while.  Other than reading Cormac McCarthy's The Road and slugging through dyslexia information, my brain has not worked out but so hard in the last 20 years.

However, much intellectual curiosity and certainly idealist views of education and child development came from my time at The University.  Over at Ruffner Hall I read Teaching is a Subversive Activity published in 1971 by Postman and Weingartner and struggled and then embraced the idea that students can lead much of their own learning and that teachers have an agenda.  Not all agendas are bad per se but even back in the hipster dipster 70's pre-SOL's and high stakes testing educators were already postulating on the effects of being taught content and not inquiry. 


And all this matters in the sense that we have struggled as parents with the sense that there has not been much intellectual curiosity with Houlder.  Doctors have only looked in their bag of tricks without moving to that proximal zone of learning.  In their defense, I am not sure that our medical system rewards intellectual inventiveness and curiosity.  And, I am not sure patients are looking to be responsible.  But, I digress.

A few weeks back I queried if anyone had connections with Robert Rust at UVA.  He is a pediatric neurologist who considers headache a disease and has some unusual treatment protocols and ideas.  We had been looking for doctors who thought about head pain differently.

On Monday, we met his fellow who interviewed Houdler for 1.5 hours.  One question that these neurologists asked that no one else has is if Houlder suffered brain freeze when he ate ice cream (he does).  At he end of our appointment and with the consultation with Rust, there was a recommended treatment.  Based on the idea that the virus he had in December may have triggered the head ache which dialated the blood vessels in his brain.  For whatever reason, Houlder had not been able to reset the the blood vessels to constrict.  Rust offered an iv drug protocol which would constrict the blood to the blood vessels.  Typically used for status or intractable migraines, Rust had some experience with headaches similar to Houlder's and had about 80% success in having the headache go away.  He explained that the treatment was in the hospital.  Rust offered to set up it up next week, and we could come back or go through the ER.

Houlder said, "ER now please."

As I had researched Rust to know he treated headaches this way under certain circumstances, we had packed a night's change on the outside chance that Houlder fit the standard.  I was not surprised that Houlder wanted to start right away and said yes knowing that William would make it work at home and that all the folks cooking for us would help him out.

The first treatment was intense.  The meds that he had to have before the actual treatment med were disorienting and frightening. The first treatment did not change the pain.  So, out of the ER and up to the 7th floor.  We had incredible nurses -- truly thoughtful, knowledgeable and kind.  A private room. By the second treatment Tuesday morning Houlder's pain had been cut by a third.  He got up.  We walked around.  We played games.  He napped.  We watched movies.  Please know, I was seeing glimpses of the boy come back.  The third treatment was a boon.  As soon as he was able to no longer have blood pressure measured, we walked down to the cafeteria, had dinner and walked around.  He played game cube which he had the nice nursing assistant hunt down.  He joked.  He watched more movies.  He watched 'Napoleon" for history class.  He was already thinking about going to school on Thursday for at least one or two classes.  His pain was almost gone.

 The number of hits I had on Facebook alone surprised me.  I had not taken my laptop so that Frazer could do school work and there I was trying to follow along on the iphone which is a great device but not for a tired old woman.

Our friend Caroline had her Ch'ville connections checking up on us for which we were grateful.  She brought pieces of our summer life to our room as we watched rain storm after rain storm.  An ER nurse (I think he was a nurse, a darn nice guy) and Caroline's mother who is a father (http://www.carolinekettlewell.com/articles/my_mother.html) had a priest from St. Paul's (where my grandfather lived in 1938) come and make a pastoral call.  It was nice to know SRA was working its magic from a distance.

I felt a connection to my alma mater which I had not expereinced before.  Not being a huge basketball or football fan like my in-laws, I have never been that fascinated with all things Hoo.  However, my family is connected there and I was always proud to have been able to go there.  And, if we ever win the big lottery, Charlottesville is one place I have always wanted to live again.  It was especially nice to know the doctors there knew Houlder was not walking around because he was in pain verses some who were thinking differently.

It was great to post on FB yesterday morning that the headache was gone.

Yipee!

However, he is still having some struggles and we are still seeing the cardiac surgeon and neurologist in Bethesda.  He remains foggy and unsteady and hands are numb and his chest is still squeezing.  Somehow these things still exist, but the pain is gone.  And for that I am full of thanks and gratitude and joy.  We saw a double rainbow from our window.  That's got to be a talisman.

Houlder went to school for two classes today.  I think he was so glad to do something normal and not spend time with me that it was worth the shaking hands and dizziness.

He is upstairs reading Lord of the Flies.  

Dell is doing homework.

Frazer is with William picking up the dogs form the groomers.

Porter is swimming in the buff letting go of whatever ailed him in kindergarten today.

I am not ready to relax yet but a glass of wine by the pool has appeal.  I am just afraid I'd fall asleep before dinner.

On my way home from Ch'ville in the sun, I thought about this song and then a friend sent it to me today:
http://www.youtube.com/watch?v=CNQXQKflJNA

Everyone needs a happy day now and then.

And I guess ours is over.  the headache slammed back into his head about an hour ago.  Damn.

Diagnostic Dilemma

One of the most coachable, teachable, parentable qualities of Houlder is his intrinsic gift of using a struggle or "failure" as an opportunity to improve and refine and relearn.  His internal sense of himself is assured and pleasant.  He enjoys taking the time to figure out the best solution.  He is not deterred if the immediate answer is not desirable.

He has tenacity and inventiveness.

He remains resolute that we will find the explanation.
He maintains this belief despite our unfruitful week in the hospital.

We left with nada.

Nothing.

Zero.

Zip.

It was a diappointing expereince on many levels.  At one point a doctor asked Houlder what he wanted out of his life.  Didn't he want to just get up and move on?

Again, my child's grace is greater than mine.  The retorts that sprang to my mind are not so polite, but he told the inquiring mind, "Of course, when I heal I will finish 9th grade, finish high school, go to college where I want to swim and do something after I graduate." 


His answer was not satisfying to the questioner.

I am often proud of Houlder, but it is not because I have taught him these skills.  His own barometer is a great guide.  Trust me, if it were more in our control, William and I would have duplicated the process. 

And, in the same manner, we cannot force curiosity in a system or process that either does not not have the time for it or reward it.

MCV ran out of options and ways to explore Houlder's situation.  We met nice doctors.  We met doctors who care.  We had some terrific nurses.  At a meeting in which we asked all the players to come to the table, in walks two parent /patient advocates without us asking them to join in -- the kindergarten mom and a SRA dad. 

But, we have nothing.

I don't want to be mad.  I am trying to be like my kid and receive the blow and collect the pieces and move on.  I am finding ways to reduce or disarm Houlder's pain.

Fortunately, that appointment at UVA has come through.  We head there today.  UVA has a different approach to headaches like Houlder's as a disease and studies them while in the mri -- I think it is a functional mri but I am not sure. 

He has an appointment in Bethesda in 10 days with at the Greater Washington Headache Clinic.  This doctor looks at the headache being triggered by something else which needs to be uncovered.

One of the doctors posted Houlder's case on a listserv.  A doctor from the Mayo clinic seems to have a great deal of experience with this kind of situation.  So, I am hoping UVA and Bethesda pan out, but the land of 10,000 Lakes may be roll into view in the future.

I am not usually as tenacious as Houlder but finding what is causing this horrific pain rouses in me a need to uncover and discern what it could be.  We will keep looking and searching and visiting people until we can stop the pain. 

There's a million things to be

In Harold and Maude there is humor is in the dark.  It is fantastically funny, odd movie from 40 years ago.

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

In this year, we are trying to find the light as many of our friends encourage us and live with the dark.  I never would have guessed in January that the easiest hurdle of the month would be Frazer's heart repair.  I don't even think we had much chance to worry, and we certainly had no reason.

Frazer went in last Tuesday around 9:30am and via technology and a skilled, thoughtful team inserted a camera through his esophagus

http://en.wikipedia.org/wiki/Transesophageal_echocardiogram

and went in through a vein in his leg to insert the device which closes the hole in his heart.  By 11am we saw Frazer roll by us in the hall and back up to his room on the 7th floor.  His first meal was Lucky Charms which he proceeded to revisit into a big pink plastic tub.  The explusion seemed to reset Frazer to normal settings (think he was getting all the anesthesia out) and he was ready to roll.

As time passes, tissue will grow over this device and Frazer will be okey dokey.

I had hoped to include footage of the inside of Fraz's heart so that you could see how absolutely fabulous it is in there, but the doctor has not sent it to us yet.  How cool is that?  Frazer has 3-D video footage of the inside of his valves and ventricles. 

I have not seen it but I did view the follow up echocardiogram on Wednesday morning and saw the device in there bridging the gap between the upper chambers of his heart.  In this situation, we have been stunned by the simplicity of this procedure due to the advancements in technology. 

We have also been touched byt the phenomenal team of doctors and nurses who spent 36 hours with him.  That's all it took.  He walked to the bathroom by the next morning and walked out of the hospital. 

Since then, he is full of energy.  Let me repeat -- full of energy!  Not tired, up early, up late, full of energy.  When they were in there, the doctor noted how much more enlarged one chamber was working hard to push the blood out.  Well, he has that energy in him to do other things now and we are so delighted.  It is stunning to think that he is that much more energized.  If I could photoshop the energizer bunny with his face, you'd get the image. 

For now, we are putting most of Frazer's other issues in a "To Be Explored" file.  There is follow-up needed for many things but for now we marvel at the kindness and thoroughness of the doctors and the change this procedure has elicited in our boy!

Wednesday morning brothers visit

He told me that he ready for SRA and swimming next week.  Nothing like a swordfish jumping in the cool pool in May.  Who knows?  He may actual have the stamina to swim the 50 consistently and timely.  If not, he will at least have fun.

Lucky circle

On Mother's Day a friend posted a link to Joni Mitchell's Circle Game.

Here is the link:
http://www.youtube.com/watch?v=AbIuC9hTY9Y&feature=share

So much for any attempts for musical hip-ness, yet  I love music and lyrics.  That whole 70's songwriter thing raised me up during that decade.

When I was a freshmen in college, our hall made together a mix tape of each woman's favorite songs.  My friend Kathryn picked "Circle Game."  Funny that I do not remember my song choice. 

The circle image is strong. 

Trying to make the circle:

Frazer finished all imaging without any new diagnoses on Thursday.  I emailed the cardiac docs aroudn 10pm to hope to schedule Frazer's procedure before summer started.  By 6am Friday Frazer was on the books for Tuesday, May 10th.  

Arc. 

Friday morning, a former Sabot mom whose child had been in Frazer preschool class and her other child is in Porter's Collegiate kindergarten class told another K-mom about my blog.  

Arc.

This mom is a pediatrician at MCV who asked questions, listened gave me her cell number and told me to have our pediatrician -- who had trained her -- to call her.  

Arc.

Thank God.  When I returned from the tea in which Frazer was in charge of watching Houlder, the man-child had reached a low that frightened me.  Houlder came into the MCV ER  with a plan to get him admitted to general peds due to the mother's day tea.

Arc.

Our pediatrician met us here on his day off to make sure every I was dotted and t was crossed and Houlder was seen by many disciplines and examined and poked and investigated.


Arc.

And our time here began.  Neurologist on call -- the one who Frazer had seen the week before who had seemed curious why Houlder was not here.

Arc.

Endocrine.  Link with Frazer.

Arc.

Palliative Care. Infectious disease.  General Peds.

Attending comes in and tells me that he had just gotten off the phone with this Kindergarten mom and that he knew that we were friends.

Arc.

tests, medicine, brothers' and dad visit

Arc.

Outside Saturday afternoon we went to eat lunch (Mekong and Jersey Mike's) on the cool observation deck they have for the peds patients to get outside without leaving the floor.

A mom and her son are playing catch.  I look at her; she at me.  Houlder and her son had played together at Thirteen Acres park before Holton was ever there.  We were in Northside Babysitting co-op together.  She had spent more nights than any mom should spend here as nice as the nurses can be.  She showed me the kitchen, the linens, tricks to ease things for Houlder, how to get better food, child life, a quiet place to meet with family.

Arc.

Porter and Dell played with catch with her son while Houlder was interviewed outside by yet anther med student.  Better to be in the sun.

Arc.  

Mother's Day.  The ultimate arc.  16 years ago on that day I had false labor after a hot and spic meal at Tex-Wisconsin Border cafe.  I sat rocking in the chair which had been William's grandmother's wondering if I was really going to meet this creature that had invaded my life. 

Arc.

2011 finds me tending the creature who the doctors are racking their brains to think of what is wrong.  Tests keep ruling out really crappy things but no answers.   Spinning ideas.

Arc.

One of these arcs need to connect.

A flowered delivered by reconnected friend.  For mother's day.  She knows what it feels like not to know.

Arc.

The world is full of souls who want love, power, acceptance, sustenance, and voice.  We were walking the halls with our children Sunday afternoon.  Believing that the greatest gift would be our child returned whole.

Our friend got to take her son home in the evening.

Arc.

A friend posted on Facebook a lovely shout out to send energy our way.  Swordfish responded.

Arc.

Houlder may be the last of his friends to get Facebook.  William and I had thought 16 would be okay.  But today I wanted him to connect with his buddies.  He thoguht that I was kidding him.  Early afternoon he signed in and I think he is friends with too many kids already.  

Arc.

The doctors said that they are out of ideas.  His pain was still extreme this evening.   They have no idea of what it is.  They don't know how to manage the pain.  They are talking about pediatric palliative care at Hopkins.  I joked that they are welcome to look at everything and come up with their own disease and write a journal article and be forever famous.  

But, I was not joking.

Breathe.  


After this uplifting meeting, William arrived to be with Houlder, and I headed home to shower, grab some things and bring Porter and Frazer for a visit.  Dell headed to swimming with friends.


Frazer toured the floor to see where he will be tomorrow night since he and Houlder will be on different parts of the floor.


Breathe.

Porter loved it but told me, "Mom I hope I never have to come here.  It kind of smells."  


Breathe.


Houlder's roommate this past few days is having a cardiac procedure right after Frazer. 


Arc.


At this point, as I type beside Houlder is watching an old James Bond, I am praying this last ditch medicine works. 


The only thing I can say it that I was not a good geometry student.  If it does not make a circle, we will keep finding the arcs to wholeness for my gentle giant.


I am scared about tomorrow but I believe it will be okay.  Sweet Frazer chose Lucky Charms this time.  Let's hope the little leprechaun behaves.

"Seasons they go round and round.  Painted Ponies go up and down.  We're captive on a carousel of time.  We can only look behind from where we came."