Quickie

Happy Easter!

Quick update:
Houlder:
Wednesday

• released from hospital, pain still horrendous

Thursday

• One of medicines made Houlder throw up.  Afterward he felt better in that his head cleared.  Houlder decided that he was tired of meds making him foggy -- stopped everything except in absolute agony.
• Thursday phone from our pediatrician telling us there was an unusual finding in spinal mri.  Had we heard from doctor -- no.  Radiologist is a Collegiate dad whose child is friends with Houlder.  Nice connection.  
• Our pediatrician trying to get Houlder into headache clinic at UVA.  Anyone know Dr. Rust?

Friday 

• Acupuncture which he mentioned in his blogging debut. 
• William goes to collect spinal mri disk and goes to pediatric neurologist's office to pick up other disks.  Doctor talks to him about spinal for 40 minutes.  He wants to run a test that he has never run and needs to consult neurosurgeon.  Radiologist is consulting with head of radiology on what he saw.  There is something off but not in an easily classifiable way.   
• Our pediatrician has started sending Houlder's case out to be studied wherever folks are interested in studying this. 

Saturday and Sunday

• Pediatrician calls again to check in with me.  He still has not heard from pediatric neurologist.   Our doctor is going on vacation but has sent Houlder's file to guy at UVA and clinic is supposed to call.  He has sent file onto guy William and I met on Thursday for Frazer.  

Frazer:
Thursday

• Met chief of pediatric neurosurgery about the chiari malformation.  
• The CT scan from Frazer in October 2000 shows the chiari.  CT's are not the typical way that one views this situation.  
• This guy did not feel Frazer's mri's offered the optimal view of the chiari, the ability to asses the size, and his cerebospinal fluid.  He ordered another MRI and a spinal mri to check on possible tethered cord and any other condition that sometimes coexists with the chiari.
• Discussed sedation the mri.  We mentioned the need to do this asap so that we could move forward with heart repair.  He said that he would mention it to pediatric cardiac surgeon that night
• Emailed fellow about scheduling Frazer's ASD repair (hole in the heart) and mri. 

Friday

• Greeted with email from ped. card. surg. that they needed to do MRI first and they were trying to move it along.  We are certainly impressed with their willingness to communicate and the sped.  Gratitude.

As of today, we are waiting to hear from ped. neur. surg. about date of mri for Fraz.  Tomorrow I will call ped neuro. for Houlder to find out the status of what is the next step.  Will also run Houlder's films to ped.neuro. surg. to look at the rest of Houlder's case.

Guest blogger: Houlder

As dictated by Houlder -- unedited.

I feel badly.

I am listening to Black Boy by Richard Wright which is really hard.  I have had to listen to it a couple of times, and I don't get it.  Mom said if I continue to have a hard time with it to move onto Lord of the Flies and just try that.  It is like when I was watching James Bond in the hospital and I would watch what was happening.  I would see all the fighting and stuff and think it was cool, but  I couldn't follow the story line.  It was just some cool action but it was mostly meaningless to me.

It is frustrating, and I just want to get better to go back to normal and be able to do all the stuff I used to be able to do like swim and school and friends.

I have been working on a model boat I started last summer.  It is helpful.  It is simple.  I am just gluing the pieces together and sanding and stuff.  It is pretty simple, and it feels good to be able to be doing something instead of just lying around and doing nothing.  I have gotten to the hard part of rigging the masts and stuff.  I have gotten to the hard part, and I am thinking I might have to do some with Mom or Dad helping me.

In the hospital, I expected it to be like me sitting around sort of uncomfortable in the hospital bed looking at the clock waiting for the day to go by which is what I sure Mom was doing.  But because I was on the really strong pain meds, it was all actually kind of easy.  It went by pretty fast.  Watching tv and movies and listening to a book mom was reading me that was all kind of like a distraction and I guess, I guess that made it easier even though I was not really watching it.  The nights were like, the nights were kind of weird because the nurses would wake me up every couple of hours to give more medicine.  It was just weird.  I am usually not awake that much, but I wasn't tired at all.  I thought that was kind of weird.

I have really liked it when people have come to visit.  It is fun to see people because I have not seen anyone in a long time.   Thanks to everyone at Poseidon for the balloons and the card.  Thanks to everyone bringing us meals -- they are all really good.  It was really cool to see my Riverside Outfitters friends when they came to see me at the hospital. 

During acupuncture I am usually lying face up, and he gives me the needles.  I fall asleep but it's more like when I wake up it feels like the most restful sleep I've ever had.  It puts me in a state afterward that I feel kind of rested and calm and helps get through all of this.  It doesn't really take away the pain but definitely the pain doesn't bother me while I am asleep on the table.  The pain comes back when I wake up.  Dad left me waiting for over an hour at the acupuncturist while he was at St. Mary's talking to a doctor but that was okay because they are all really nice there. 

I don't mind all the tests because I feel that they are getting me one step closer to getting me better.  Some of the doctors are pretty nice.  So far most of them don't seem to be that interested, or I don't know.  Dr. Tipton has been really nice and is worried about me which I think is cool, and I really appreciate that.  He is helping us a lot finding someone who can find out what is wrong.  But I am kind of tired of the appointments and the hospitals.  I would be fine going to more but only if they knew what they were doing.  Some of the appointments seem useless because they don't seem to know what is going on, and some of the doctors even seem unhelpful. 

I am learning that a lot of doctors are worried about covering their asses so that they don't get in trouble.  So sometimes to do that they don't help someone like me.  It is really annoying.

We need a "Dr. House" without the attitude or drug problems.  Hahaha.

Thanks for reading my ramblings.

Houlder

Make it up as we go along

"The less we know about it the better
We make it up as we go along" Talking Heads

This song has anthem-like qualities for me.  Love, the unknown and home.  The journey of life.

But, the ability to keep grasping "to make it up as we go along" is fading.  My willingness to float in a sea of uncertainty has become an anathema to me.    While I should be singing Gloria Gaynor's 'I will survive," I am feeling more like Eeyore:

"It's snowing still," said Eeyore gloomily.

"So it is."

"And freezing."

"Is it?"

"Yes," said Eeyore. "However," he said, brightening up a little, "we haven't had an earthquake lately." AA Milne

The earthquake feels right around the corner.

Houlder finished up the MRI of his spine last night at 7:50pm.  I had inquired numerous times throughout the day if we would be discharged after the test.  It was all unknown.  Back in the room at 8pm, Houlder's pain edging back into too much discomfort, the doctor, who had been there all day but not come in dropped by, came to discharge us.  At 8:30pm.  When she asked Houlder if he was ready to leave, he said no.  She then said "It's not your decision; it's your mother's decision."

Parenting 101.  Don't ask a yes or no question if there is an answer you will refuse to accept.

I understood her point but the willingness to filter and ignore was slipping.  I said, "But do I have a choice?"  Good manners kicked in and I mentioned to Houlder how nice it would be to sleep in his own bed.

I was able to secure pain management to get us through today and maybe tomorrow and felt we needed to go.  Home was where I wanted to be.

Surprised to be discharged in the dark schelping bags to the parking deck alone but grateful as well.

I am going to started pulses, temps and blood pressure tomorrow every 4 hours just like at hospital so that I can manage everything.  I was an English and sociology major, but here is my plug for liberal arts colleges.  I think this info might help, and I believe I can do it.  It's that liberal arts education sneaking in tripping the think button.  My step father taught me how to do all these a few weeks ago, and it's game time.  Stepping way out of the comfort zone into health care management.  No Joyce or Milton here.  No Chopin or Morrison.  No lyrical way to compose, numbers, data, measurements. Just the facts reported please.

An added doozey yesterday came for Frazer.  The endocrine called and told us that Frazer is producing growth hormone.  I frankly am surprised.  He thinks he should be on the hormones anyway.  We are trying to figure out what that means with the chiari.  William and I are still trying to figure this one out.  There are health risks when you give the hormone if the body is producing yet.  Again, research, question, explore.

"Make it up as we go along."

Frazer meets the neurosurgeon today.  I was able to score his CT scan from when he was 10 months old at hospital (2000) while Houlder was in his room.  They were in a bin to be destroyed.  Cannot complain about that luck.  Small Pooh moment.

I have been up since giving Houlder meds at 2:45 trying to remember that this may be a another starting point.  In fact that is all I believe.  It is some information.  For those who think we have abandoned the hunting and gathering society, I contend this mother is gathering tomes of info, test results and the lot.  I found a cool Rx app for the iphone to program the meds and an even cooler one  at the app store for macs to keep track of medical records.  I have lengthy notes but felt there was a better more concise way to present the info.  I hope I have stumbled onto the power of the apple.

Houlder will need to trudge with me to these appointments as I don't think he can be left home alone.  William's parents are coming up for Grandparents Day at Collegiate and I am hoping will feed Porter lunch.  Frazer will head to neurosurgeon with us.  Dell has snagged a ride home with our neighbor.

Last night when Houlder and I got home about 9:30, we feasted.  Several folks had shared their love and kindness, and we had delicious and ample pickings.  We are so thankful.

I am hoping Friday to hop like a bunny to find some treats.

This Must Be the Place (Naive Melody) Talking Heads
http://www.youtube.com/watch?v=Cqg_ZGcuybs

Tuesday afternoon I am just beginning to see

pencil sketch mode of photo booth as Houlder watches a 007 movie

The Moody Blues.  Feeling a bit moody and blue.  The song is soulful, questioning, and curious.   Understand these emotions.

Long night, moderate pain relief, no breakfast for the boy-man as he got carted to a lumbar puncture.

pre-puncture

It was a little study in science and technology and medicine.  Using an x-ray, the radiologist guided a 3.5 inch needle in between lumbar bones (vertabrae) and remove a sample of cerebrospinal fluid to test for viruses, lyme disease -- lots of good stuff.  The test also can test the pressure of the fluid in the brain.  Pretty amazing how so much has been uncovered and figured out.  I literally watched some of Houlder's spinal fluid squirt out of his back.

It was wiggy.

In typical Houlder fashion, he asked to see the needle, the fluids, how he learned how to insert the needle.  The kid is made of sturdy stuff. 

Comfort came in unexpected ways.  The radiologist chatted with Houlder and asked him about his life.  Of course swimming was the main topic.  So the doctor says, "I went to this small college in Ohio."  Houlder, "Kenyon?" Doctor, "Dension."   He was a grad of the school who just unseated KC's 31 year run as DIII swim champs.  Oddly, I was at ease.  Chatting about the schools and life and what not.  The lumbar puncture only took 10 minutes.  Small comforts.

Back in the room, a sweet friend brought lunch and smoothies and good conversation.

But, the pain was there.  They had not wanted to give Houlder meds before the lumbar puncture so his pain was pretty high before the test.  The good news is that he did not get a spinal headache.  The rough news was figuring out the the mixed messages.

In a nutshell, we are still waiting for results.  We have some but still need more which takes times.  But I was feeling frustrated as I watched Houlder still struggle with the pain.  As he had to explain to another doctor how he was feeling as he struggled to just get out of bed to stand.  A huge boy-man who needed support to walk.  Poor guy.  The hospitalist explained this afternoon that the hospital is only a place for acute care.  Even though Houlder needs care and observation, he should be moved to outpatient fairly soon.

We were a bit surprised that hospital is not the place for care -- or only rather acute care.  The peds wing is pretty empty.  My mother-in-law heard all this.  We were both wondering.  Frankly even the doctor herself was.

As I helped Houlder and got the nurses to get him some relief, I simmered.  Houlder asked me if we would go home tomorrow.  I said that I thought so.

"Something, calls to me,
The trees are drawing me near, I've got to find out why?
Those gentle voices I hear, explain it all with a sigh."

http://www.youtube.com/watch?v=bPLWBhNW3FM

"With a sigh" I was stewing with the conflicting views when our good primary pediatrician came in to visit and check.  On his day off.  He sat for 1.5 hours.  He expressed what needs to be done and how no one in town is doing it.  The best part was taking the time to explain that this is a blip in Houlder's life even though it is hard now.  He asked Houlder how he was feeling.  Houlder shared how he was sad to be out of swimming so long that he did not have the chance to move up to the senior swimming group with his buddies.  Houlder asked so innocently if the pain which had come on so quickly could how just go away.  Our pediatrician took time to listen.  He told us about the research he had been doing.  He told us he had added Houlder to the prayer list at his church.  He validated Houlder by telling him that what he is experiencing is real.

Another gift came to visit. Three of the adults Houlder had spent the last three summer working with at Riverside Outfitters tree climbing camp came by.  That generous time lightened Houlder.  It connected him to his life.  Houlder's camp nickname is Gulliver.  In his absence, they have named a tree limb Gulliver.  He  loved hearing how the amazing Jocelyn has made it to tree climbing champs in Australia, how camp is set up but mostly hearing how they wanted him to get well and that there was a place for him.  Kind of a "Norm" moment.

Right now we are waiting for a shift change and the pediatric neurologist to come by.  And, our pediatrician is back, waiting with us.  Talking to Houlder about books and James Bond movies (Houlder has been watching them on Netflix).  Hopefully there will be another test tomorrow and a connection to another place that is looking to solve a bunch of disparate symptoms and not only play the statistical odds. 

"I've got to find out why?"

sixth floor st marys

Houlder's pediatrician got him admitted into St. Mary's.  We're here, waiting for pain meds and pediatric neurologist.  Nothing profound except all my notes have been mighty handy.  For a messy fool such as myself, the discipline to keep up the journaling helped today in knowing what meds, when and reactions.

Reading him an Alex Rider book.  Hope it helps.

"You want a doctor interested in the the gestalt of your child."

These were the words of our pediatrician last Tuesday when we met with him.  It is one of the main reasons we are so fond of him and the care he gives our boys.  He recognizes them wholly.

We went moved through our week holding out some hope that maybe the meds would provide a touch of relief for Houlder.  That maybe our plan for the lumbar puncture and spinal mri would move along quickly so that we can get some answers and move Houlder up to Hopkins to figure out the heck is going on.

Porter at fencing Wednesday

Frazer at fencing Wednesday

Thursday was a full day.  Frazer had an ultrasound which showed that the renal cyst had not grown and will only need observation.  As we left after five hours at the hospital, I got a message from our ped.  The neurosuregon will see him in a week, and he does not want Frazer to have the spinal mri.  This doctor claimed on the phone to our pediatrician that kids with chiari don't usually have tethered cords which is different than the literature.  But we will still go and try because Frazer has to start somewhere. I guess it does not help me my connection to the national support group for chiari is local and had shared with me that her child was treated by this same suregon.  She had been told for years that her child could not have a tethered cord, and the PNS never ordered the spinal mri.  When the family finally went to Charlottesville, they learned her child did have a tethered cord which caused endless headaches.  I am already trying to convince myself to be open but it was interesting how Frazer has over half the symptoms but this PNS summarily, without reviewing the case, was rejecting the idea.  William's take is that maybe he wants to be the one to catch it.

Of course, William cannot go to that appointment because he has to take Houlder to another doctor's appointment at the same time.  Sadly, I feel that I need to trust my gut with this PNS more than I do the other appointment.  Men and women just experience things differently, but in writing that I wonder if William should take Frazer.  Maybe he can wrangle the spinal mri better than I can.  Will have to think on that.

Additionally, Thursday I got a call from pediatric nuerologist's office giving me an appointment for Frazer.  The endocrine had requested one, and I guess was given an appointment in October which apparently he felt was ridiculous.  He got him another one on the 26th.  Our pediatrician had thought we should skip the whole neurologist thing but I figure one more check in with a different person after the pediatric neurosurgeon cannot hurt. 

I also had to rush disks with mri's and reports to the second opinion pediatric neurologist for Houlder who is willing to consider doing a lumbar puncture but wants to see films again.

By Thursday night, Houlder was curled in a ball of pain from the neuro med.  His back hurt and his stomach -- both common side effects of the meds.

That was Thursday.

Frazer -growth hormone testing watching Pokemon

Friday Frazer and I spent 6 hours in the infusion room of Children's Hospital while he had the testing for growth hormone.  It went relatively easily given the laptop and wifi and instant netflix.  He did pass out at one juncture for 20-30 minutes but they gave him an iv to pep him up.  He had been fine and then whoop, out he went.  It was a long time to be there but in the end, no big worries.

Houlder was miserable again on Friday because of the medicine.

William and I contacted the pediatrician but had no word over the weekend.  The pain was crummy and we just hated waiting to find out that we need more information. 

Sunday Houlder was almost the worst yet as he had some sort of change or addition to the headache.  He said it felt like he had a second one on top of the first.  He is in fact unclear about it.  The pain medicine that made him loopy made him so fuzzy that it scared him.  The other neuro medicine finally left his system after 48 hours.  We debated whether or not we should take him to the ER.  We thought and could not figure out how it would help.  Maybe we are being cynical but unless they would admit him, we could not imagine what they would do.

I have checked on Houlder every 20-30 minutes all night.  Cannot help myself.  I don't want that changed pain to mean something more.  

Porter did run in the rain Saturday his first race.  There were no ribbons but he was the fifth one to cross the finish line.  Dell worked all day on his paper so that he could see an old preschool buddy who was visiting form Portland.  Frazer had a friend over and they got to see "Rio."  There were moments of normal life which were helpful. 

Lining up

Going for the second lap

Yellow spray painted hair for VGF

VGF rain walk

the Odyssey

The night before the GH testing -- brothers sleeping together to ease the nerves in mom and dad's bed

Friends have been so great reaching out and offering to help lead lego group or make a meal or take over some SRA responsibilities.   William, Dell and I got a tuck load of horse manure and two truckloads of top soil so that we can throw together some sort of garden.  Basically herbs.

Monday is usually a fresh start kind of day for me.  I hope the coffee can rally that spirit.  Got to make the plan happen because truly it is about the gestalt.  A little bit of a kink does not take down the whole but too many kinks makes it much tougher for the sum to be greater than it parts.

Odyssey of Thought

I am unexceptional in the hours I spend driving in my Honda Odyssey.  During my time I try to connect the dots of our lives.  For whatever reason, I am driven by the feeling that our bodies are connected parts to each other, that humans are connected to each other, that humans are connected to their environment and that we are, despite overwhelming evidence to the contrary, driven to function in unison -- not harmony necessarily. Driving kids to practices -- now primarily doctors appointments -- and school provide me much contemplation.  I keep wrestling my synapses to make order from the nonsensical.  I believe there must be a "connect the Dot" at Ben Franklin that I have missed. 

Insert picture of the "thinker" driving an old beat up silver Honda Odyssey with a twist. The thinker is a middle age mother who needs her oldest child to jump out of bed and run to school and splash in the pool and her third child to trip a switch and make an adjustment to turn the dial back.

Tuesday night William and I met with our pediatrician for 3 hours.  We are extremely grateful that he could meet with us.  He apologized that he sent us to someone that he thought would find Houlder's case as much a puzzle as he did.  He was not the one who needed to apologize.  He stepped up, and we have a plan as follows:
Houlder:

1. lumbar puncture with pediatric neurologist we got second opinion from
2. spinal MRI in case of tethered cord or other issues
3. following up on ideas of chlorine toxicity and glutton intolerance
4. re-screening of lyme, mono, chronic fatigue and a few others
5. pain management doctors
6. appointment at Hopkins with a pediatric neurologist and hopefully a few days admission to observe him

Frazer:

1. spinal MRI to check for tethered cord which is prevalent in Chiari patients
2. appointment with pediatric neuro-surgeon
3. appointment with geneticist
4. looking into some of the specialists for Chiari at DC's Children's Hospital, University of Chicago's Children's Hospital (both have grants from NIH), Duke, and UVA
5. initial contact is local but planning that treatment maybe out of town -- options vary widely from fairly extreme (removing 4 inches of skull to make room for growth) to a wait and watch
6. pursuing the growth hormone testing tomorrow which will be horrible for sweet Fraz but also pursuing the connections between chiari and growth hormone -- there is a connection but literature is not clear.  It may or may not effect treatment plans but will also compel us to find a place that treats it in a collective group way and not so practitioner by practitioner.
7. following through with urology ultrasound today to follow up on cyst found in January -- probably nothing but maybe relevant once genetic testing results come back
8. Continue to postpone ASD heart repair until we have a better grip of the entire situation

Okey Dokey.

Got that?

The stuff rumbles around my gray matter.  For info on the chiari try www.asap.org.

Friends, you have been awesome reaching out and helping.  We appreciate it so much.  I owe many folks notes back and emails and FB's.  I am getting there.  Maybe this weekend.

Porter is running in his first race at Collegiate, a 1/2 mile fun run, and then tee ball and Village Green Fair (sugar and inflatables).  Dell continues to write a research paper using Laura Hilenbrand's Unbroken and Kurt Vonnegut's Palm Sunday and Slaughterhouse Five to explore treatment of American POW's and how they re-entered American life.  Have no clue if he has a clue but it is some big idea thinking.  William continues to study every waking minute that he is not traveling and working for this test he has in June.  We are developing a new normal but it is changing a bit each day.

It is the truth.  Hopefully we will make it back in better time than Odysseus.

I will raise him up

 "In the day-to-day trenches of adult life, there is actually no such thing as atheism. There is no such thing as not worshipping. Everybody worships. The only choice we get is what to worship." David Foster Wallace

In church our priest had the tricky job of trying to discuss a lengthy gospel about Jesus raising Lazarus from the grave.  She connected the gospel and a true story of a Jew who survived an execution, crawling out of open mass grave, knocking naked and bloody on the doors of Christians he knew.  Only one gave him refuge.  This story does not glorify the goodness of humanity but the resilience of the spirit to survive. It was his willingness to remain vulnerable with a broken heart which allowed him to heal.  Later in church we later discussed the movie Ghandi and what allowed his simple act of non-violence to be so powerful and move people towards reconciliation. 

It was a lesson to encourage broken hearts to heal.  What compels us to remain vulnerable despite the self-serving nature of each person?  That is what David Foster Wallace discusses in his profound speech, "This is Water."  But, DFW concludes, we all worship something. He goes on to link this need to believe to our need to think and be aware; "The capital-T Truth is about life BEFORE death.

It is about the real value of a real education, which has almost nothing to do with knowledge, and everything to do with simple awareness; awareness of what is so real and essential, so hidden in plain sight all around us, all the time, that we have to keep reminding ourselves over and over:"

In the face of all that we are trying to learn about chiari malformation and growth hormone deficiency and artial septal defect (hole in the heart) for Frazer and myriad of things that headache can be a symptom of with lesions on the brain, blurred vision, loss of balance and pain --relentless, nagging, persistent pain for Houlder.  We received an email from our pediatrician who we respect telling us that he could not get the neurologists to give him a consistent plan for medication for Houlder.  That they cannot agree in the best way to treat him.  It is almost as if Houlder is to will himself well while Frazer carries on relatively unscathed with multiple labels.

In this dance is where my broken heart lies.  Will's broken heart lies.  Where are the doctors who have remembered DFW's capital T truth -- to keep an awareness?  What are they worshipping?

To me this experience is not just an unfortunate opportunity to examine what is wrong with health care but it brings to light what is wrong with education.  How are we grooming our practitioners?  If a patient presents and cannot easily be placed into a box, is the patient the failure?  If think our educational system -- public, private -- is so driven on measurable, quantifiable results.  We need to rank and compare and not search for answers for answers sake.  We have lost the capital T Truth.  We are good at testing and measuring.  We are good at statistics and making numbers seem to tell us the Truth.  If you are a patient and don't fit into a one to the multiple choice answers, are you no longer sick?  I had thought science was about finding the right question and solving it -- and learning sometimes our assumptions are incorrect.  Have we moved to such ranked existence that failure no longer informs our process but puts us at the back of the line?  Does being at the back of the line mean failure?

Isn't Truth in the everyday?  Have we lost the ability to examine and learn and uncover and figure out. Are we so afraid of being Wrong that we cannot say, "I don't know.  Let's figure it out?"

We have friends who don't believe in a particular faith and many who avow agnosticism.  I won't deny them. For me, the reality that there is a power greater than me and my mere earthly understandings came in becoming a mother.  Nothing has rocked my universe in the same way.  I am not claiming that all people need parenthood as proof that there is something greater.  I had faith previously but seeing Houlder for the first moment has seared into my visual memory and has cemented in me that there is something greater than what I can see and know. 

And, yes I know that thought can deconstructed so easily.  But, it is what it is.  Simple.

Many well-educated medical professionals feel it is reasonable for a kid to drop out of life because his pain is too great to even sit on a deck chair to enjoy the sun is my broken heart -- the vulnerability for this journey.  Our search for relief, for answers, for care.  It is our knock on the door.  Our faith calls us out each day to remain open with our broken heart.  To believe in our capacity to find someone who can heal and therefore allow us to reconcile the frustration, the anger and the hurt.

My head spins trying to synthesize all these elements.  Because we are more than disparate body parts and brain parts and heart parts but a functioning machine with each function depending upon the others success.  We are searching for places and doctors who can help.  We are trying to hold the space for our hearts to remain open to the pain we witness. 

In church we closed with the hymn, "We Will Raise Him Up" which was a call to me to continue to raise and hold the boys -- all four of them -- up.  Grow them up.  Grow them up safely and without pain.  We are looking for the doctors who can go on this journey with us.  We have found some.   But, we need more.  Frankly, we the universe, need more.

Should I Stay or Should I Go

Frazer fencing class

Enveloped in kindness after my post about Houlder's ER visit, names and suggestions filled my FB message box and email box. 

There is nothing as scared as knowing one is not alone on the journey.

I am humbled.

Grateful.

Thank you.

Going somewhere else is in the works but it is a process. 

Some of you have not known our dilemma or need to try to solve this locally.  It lies with our sweet Fraz.

On Wednesday -- just a shift change after leaving the ER with Houlder, Frazer had a MRI under sedation to look for a tumor on his pituitary. The procedure went smoothly and providing some needed comic relief.  In recovery when the nurse asked if Frazer would like graham crackers or goldfish, he asked, "Do you have fruit loops?" 

I cannot make up stuff that good.  For those of you who don't get the joke, see  Awaiting Fruit Loops http://starchamberexperience.blogspot.com/2011_02_01_archive.html

Denied his sugary delight, he managed with two bowls of Frosted Flakes and Cartoon Network.  Frankly, he lived in high style and by the end of the day he went to his fencing class. 

Additionally every person, I mean every person, commented on his blue eyes.  I had to giggle.  Frazer did not turn his but shrugged his shoulders, "Yeah."  See http://starchamberexperience.blogspot.com/2011_01_01_archive.html

Houlder did not get the release of pain. 

Thursday morning found us headed to school for Porter's teacher conference, Will to Houston, then Houlder to chiropractor, then back to school for Dell's conference.  Then home.  Then meeting about Southampton.  Then pick up a friend. Then terrible traffic on Cary Street Road and Huguenot Bridge and then Houlder to the acupuncturist. 

Oh, a phone message too.  The endcrinologist called and left a message on my cell with speedy MRI results.  Good news!  Frazer does not have the pituitary tumor.

BUT...

He does have a different tumor.

A different brain tumor.

Process.

Process.

Breathe.

And the world shrinks and expands.

Arnold-Chiari Malformation.

"Mrs. Hudgins, Frazer will need to be seen by a pediatric neurologist and neurosurgeon.   This is out of my field."

Yeppers.

I could not make this shit up.

Back to same pediatric neurologist who had just fired us.

Indeedy karma.

We are looking lots of places.

But let's not forget the cardiac team we like for Frazer is here in Richmond.  And, the endocrine process to date has recently transferred away from UVA back to Richmond.

Or Houlder.

Or the two other kids.

On the shrinking, our acupuncturist who has worked with us on and off for ten years has been working with  another child who has this same thing.  Her mom is the national non-profit educational leader.  She wants to talk with me.

I am lucky.  Frazer is lucky.  We will not have to tread down so many fruitless paths.

Maybe lucky is not the right word.

Yes I had to call Will who had to process the info in the Philly airport while I processed in the parking lot of the chiropractor off of Thompson and Grove.

Are we living a daytime soap opera?  My hair and outfits are not up to snuff.

A shiny moment came during the afternoon acupuncture treatment when Houlder's pain dropped on the table to a "six" in terms of pain.   It did not transfer out of the place.  In the car he kind of grabbed as the pain just seemed to jump back into him.

And, just to make sure I am paying Karmic attention, Houlder's pain meds seem to be messing with him -- tightness in chest, weird rash on his toe.  At 8:20pm last night I went to a neighbor's to chat and have a glass of wine.  Kids were either asleep or reading.  Remember Dell is 14.  I figured he could call.

Our pediatrician called at 9:30pm, talked to Houlder and suggested he double the meds.  I was a delinquent Mom trying to have a moment to myself with a friend and am left with a head scratcher.  Did he really say double the meds that are making you chest tight?   Houlder called me at 10:15 to say Frazer was up crying worried about me.  I came right home.  He had slept and then awaken worried I had fallen -- note to God, please don't let this be a premonition.

Houlder has been up almost all night in pain. 

Finding new places and doctors managing life in Richmond.

I give you the Clash. 

http://www.youtube.com/watch?v=V1Gn0e7kvTA

When logic and proportion have fallen sloppy dead

One of the bad habits I have developed and try to deny is Law and Order.  Shockingly I have not yet watched every episode -- SVU, LA, old school.  It is background.   L & O soothes predictably -- a crime, an investigation and a court room drama.  I have found myself not paying attention to an episode only to watch the final 10 minutes and get drawn to the story line du jour and weep a tear just like a good Cotton commercial. 

That's just it.  My problem with modern medicine.  I except Doc Baker from Little House on the Prairie  or maybe even Carter or Dr. Green from ER. 

Houlder woke at 3:30am last night off the richter scale of pain.  The head the upper school called last night to talk with him but he was rolling around in pain unable to answer the phone.  By 7am he was in tears begging me not to make him get out of bed.  He was miserable.  Worse than when he broke bones.  Crummy.  As a parent I felt helpless.

I took him to hospital to break this relentless pain. 

So many doctors.  So little relief.  So much passing the buck. 

Two highlights.  Our friend who is an ER doctor visited us and shared his corny, puny jokes -- he is a good guy.  Frazer, who tagged along and did his school work,  got to unexpectedly visit a friend in the hospital ER.

Four doctors -- actually five, incorrect histories, different versions about how to take the bevy of medications being prescribed, confusion.  One doctor thought his headache had been going on since 2010 and one nurse since 2001.  Small easy mistakes I know, but they did not think it was weird that my kid could have a headache for 10 years.  One headache.

One doctor says take medication every four hours, one says only take it once a day, one says only take it if the base level of pain is substantially raised.  All suggestions were for only one med.  We left with three and one that our pediatrician had called in last night.

I learned that the one of the docs we saw said in his notes that he prescribed something -- which he did not -- so we were asked why we did not give med.  I must have repeated that story multiple times.  I learned that one doc said we could not give a med while another doc said we could right in front of us.

I learned that yet again when the docs don't know what is wrong, psycho-therapy seems like a good idea.

 I learned that the docs don't know what is wrong with Houlder. 

I brought Houlder in to relieve the pain.  He entered with a ten plus -- worst pain ever he said,  and left with a 7 and a plan which had been articulate in three different ways by four different doctors.

Head spinning, fighting tears, breathing through anger, we waited to get out of the parking deck.  My sweet giant asks what just happened.  He asked why the doctors did not give us the same directions.  He asked how was I going to know which medicines to give him.  He asked if the pediatric neurologist had given us the heave ho because he seemed mad that we had gone to other doctors and gotten other opinions -- "Well, maybe the problem is that you have seen too many doctors and you should only be listening to one -- your pediatrician."  Okay, sounds like we have been fired with drugs.  Oh the drugs: the drugs that may give him some relief now; the drugs that can bridge the pain between the pain relief this afternoon and the long acting one -- which may or may not work but give it a try.  A steroid just in case there is inflammation even though we were told there was nothing wrong.

Yeah, I am feeling like Alice's big sister as Alice trips down the rabbit hole -- telling a story that hopefully my son will rouse as a well young man. 

Friends have joked that an herbal remedy exists that has stood the test of time which is clever and amusing but too Grace Slick for me.  Lewis Carroll suffered from headaches and treated them himself.  I am trying to treat my kid a little better:

Houlder's afternoon

Alice
It would be so nice if something made sense for a change

 or

When logic and proportion
Have fallen sloppy dead
And the White Knight is talking backwards
And the Red Queen's "off with her head!"
Remember what the dormouse said;
FEED YOUR HEAD

http://www.youtube.com/watch?v=WANNqr-vcx0

The game of LIFE

It has been a long weekend.  I offer no polite euphemism.  Friday which I had ardently longed for seems many moons ago filled with lots of nothing and everything.  It was trying.  It is over.  It is life.

But there were some bright spots as we are ending with a treat and not a trial.

Each boy grapples with his strengths and his "what ails him" as my grandfather would grump.  This weekend provide ample views of the later but ended with the former.

Houlder managed a treat at a friend's house for VCU's final game of the season.  His friends folks' were kind to let me hang out to make sure that he was okay.  15 year old boys love it when mom hang for the party.

But, I still did.  They were nice and fun and it was great for him to have some time with friends.  It is amazing what how sitting and eating in the company of friends knocked him out.
His soul was feed as well which hopefully will sustain.  His pain is intense almost all the time and he is sleeping more and more every day.  18-20 hours a day.

Frazer worked out at the gym with William and had some struggles after five minutes.  He slowed his pace and managed 15 minutes.  It will be interesting to see how that improves with the still unscheduled heart repair.

This week involves chiropractor and acupuncturist for Houlder and a MRI for Frazer.  We hope to hear from the neuro-pediatrician and learn how to proceed.  

But the weekend ended with all four boys and I playing the game of LIFE.  It was nice.  I was guided by some words I had heard from Jeff Wolsberg in a parent education Friday morning:

"Parent Mantra: Praise and Support with Correction and Direction."  It's a good mantra.