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Recent changes to my blog

In the last year, my return to church has been tumultuous. A few people have become upset with me. I have desperately tried to work things out. Apologizing. Meeting with the people to see how we can better work together. Trying to make this work for the sake of my own sanity and for my husband’s ministry.

Problem 1: I only returned to church because of Covid. My husband asked for me to come and help him livestream worship. The whole family came in to help. Changes were happening on a regular basis especially with the pandemic and the political nature of it all. What we had been doing at the church for the last ten years wasn’t necessarily going to work in the new pandemic paradigm.

Some people worked well with change. Some did not. All of this created conflict with myself and another. Mainly the problem was that I couldn’t figure out how to meet this person’s expectations. I was constantly upsetting the other person. And since, I can only control myself and my own behavior, the end result of this conflict can only rest on my shoulders.

Problem 2: Having friends in the church is hard. And I don’t mean casual friends. I mean people that you consider so close that you think of them as family; welcoming them into the inner sanctum of our family life and privy to the struggles and triumphs in our life that we would normally not share with the entire world.

The one thing that I have always said is that I feared people using their connection to us as the pastor’s family as leverage for their own gain. I have been so careful as to whom I let into our family’s life because of that fear. I am sad when I chose poorly. Ultimately, I am the gatekeeper to our home.

So, what does this mean for my blog?

I fear my words being used against me.

I fear my husband not being able to continue doing ministry which I truly think he is called to do.

I fear saying something that will unintentionally hurt someone.

So I am making some of my posts private. I will gladly share the password to those who request it.

Thank you for your understanding during this painful time.

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And any other type of controversial discussion that would normally reside on the “don’t talk about . . . “ list when spending leisure time with family.

  1. Listen . . . instead of talking.
  2. Asking questions of the other person in order to better understand their point of view.
  3. Actively listen when the other person is talking instead of trying to think of what you want to say next.
  4. Stick to facts that can be verified.
  5. Do not raise your voice.
  6. Be willing to question your own viewpoint.
  7. Always seek to find areas of commonality.
  8. Always be respectful.
  9. And if you are having a discussion and it is quickly going sideways or the other person clearly isn’t interested in a “discussion” and isn’t playing by the same set of rules like the ones listed above, you have two choice:
    1. Say, “it sounds like we will have to agree to disagree.”
    2. Go to Rules 1, 5, and 8.
  10. Finally . . . No matter what, nothing is more important that family and friends. Including politics.

This is what life looks like for a family with serious chronic illnesses.  Each basket is filled with daily meds for one person.  All medicine is bagged individually with detailed information on each bag.  Each month, I dose medicine into weekly pill containers.  This usually takes me between 3-5 hours.  I dose the meds, rewrite everyone’s med lists on notecards for their backpacks, and then I put a med shopping list together.  Since I usually do this on the weekend or in the evening, I do the med shopping the next day.  This usually requires phone calls to various pharmacies.  Then follow up phone calls to doctor’s offices.   #notallillnessesarevisible #chdwarrior #dysautonomiaawareness

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By the way, these are just the daily meds.  This doesn’t include the occasional medication.  And these baskets have been a lot leaner and also a lot fuller.  Medication is an everchanging subject.

 

And not to leave our youngest medical mystery out, we have Miss A. our youngest child.  Several years ago, Ainsley had a seizure and quit breathing after receiving a flu shot (the whole episode was NOT due to the vaccine itself). Luckily we were at our local pharmacy and the pharmacist (also owner)’s  wife, a nurse, and Chris were there. Chris gave Ainsley mouth to mouth, and after a few minutes they were able to bring Ainsley back to consciousness. While we waited for the paramedics to arrive, they were able to do their medical magic to check blood pressure, sugar levels, etc.  Checking to see if there was any obvious reason for Ainsley’s seizure.  Nothing was obvious.  Because of Ben’s heart condition, we took this seriously and had her checked out.  Nothing.  Probably just a vasovagal event and she actually didn’t have a seizure.  After all, I had never seen one before, maybe I didn’t know what I was seeing.

Fast forward another six months. Ainsley has another one while at school.  No one saw her.  She didn’t tell anyone.  She just went to the nurse and called me.  She was crying because she knew she had one and didn’t know what to do.  (Details are being left out to protect the innocent). We took her in to the ER to have an EKG run as close to the actual event as possible. Nothing. Normal.

Two months later. We are at the pediatricians office.  Ainsley has to have a routine blood draw.  She is laying down, but when the nurse first missed the vein and started to fish, Ainsley looked at me, said, “Bye, mom”, and went into a tonic-clonic seizure for over two minutes.  Luckily, it was at the doctor’s office, and our pediatrician saw it.  She was able to verify that it was a seizure.  She had timed it and said that we needed to up our game to take her into a neurologist.

So, in two years, Ainsley had a total of four seizures that we know of.

Saw the neurologist, had a ton of testing done, and the doctor diagnosed A with epilepsy.

The neurologist started Ainsley on seizure medication.   When it didn’t agree with her, we went back and happened to see a different doctor in the same clinic.  He felt that it wasn’t epilepsy, but dysautonomia (Ben had seen this same doctor before, so the doctor knew his health history).  They had just hired a dysautonomia specialist and we went to go see him.

This doctor did great things for Ainsley.  Diagnosed her with POTS, Ehler-Danhloe Syndrome, Mast Cell Activation, and others issues.  Regardless of the diagnosis, the treatments helped Ainsley tremendously.  She didn’t have any more seizures.

But . . . .

this doctor left the clinic.  The other doctors didn’t want to take our cases.  And after years of trying, I was able to get all three kids into Dr. Butler and the dysautonomia clinic at UT-Medical Center.  It was a miracle.

The first things that Dr. Butler ordered was a tilt-table test.  None of the kids had had one.  This test is a standard in the dysautonomia world.

Ainsley was the first kid up for the test (out of all three).  We didn’t think anything of it.  It is not invasive (which is why we said yes).  The cardiologist who partners with Dr. Butler is in the room and monitors everything.

And then of course it happened . . . 7 minutes into a 45 minute test and Ainsley passes out and has a seizure.  Again. I expected her to have one, after all, she had been diagnosed with dysautonomia already.

What I wasn’t expecting was the doctor’s report to us.

His diagnosis for Ainsley is severe dysautonomia.  Ainsley actually flatlined on the table for 13 seconds while the doctors moved the table back to a horizontal position after she started her seizure.  Her heart stopped beating.  Seriously.  I was in shock.  My actual question to the doctor was, “Is that bad?”  That was my question.  (Oh, the answer was yes.)

He also said that she didn’t have an epileptic seizure.  She had seizure like activity.  Meaning . . . instead of her brain misfiring causing a seizure to occur. It was different.  Her blood dropped to her feet.  She lost 60% of her blood volume in her brain and chest.  It went straight to her legs and feet.  So her heart stopped beating because there was not enough blood to pump (no gas in the tank).  Her brain had a seizure because there was not enough oxygen in her brain, so the brain just turned the light switch off (causing a seizure).  All because she went from laying down to standing.

Her body’s autonomic nervous system, which tells your body to do things like breathing without you having to actually think about it, does not work properly.  The doctor said that out of all of his dysautonomia patients with POTS (and he said he over 1500) only about 80 have as serious of a case as Ainsley.

So long story short (and we have certainly skipped over a ton), Ainsley has been added to the list of medical anomalies in the Lake house.  She is rather proud of this one.  (When her brother had his tilt-table test and he made it through the whole test without passing out. She said, “I won!”  Really, kid. This isn’t a contest.)

We are dealing with this diagnosis.  I’m glad we figured it out before she started driving.  That could have been dangerous. She won’t be eligible to drive until she is closer to 17.  She is the master of her own health, and has is really working on being healthier.  She has many other health issues that we have also been dealing with, but none are as dramatic as this one.  She is a trooper and I’m very proud of her!

 

 

 

 

 

 

An update on Ben

As of today, July 4, 2020, Ben is NOT currently in the hospital.  Thank you, God! I posted a picture of Ben and since I rarely post updates on Ben in the last several years, I created a lot of confusion.  Sorry about that.

Here is the current update:

  1.  Ben’s heart is stable.  Not better. Not worse.  Stable.  That is important.  After his last procedure in the Cath lab in 2016 where a Melody Valve was placed in Ben to help with a pulmonary stenosis had been getting worse.  The pulmonary stenosis started after the Ross-Kono procedure in 2015.  Inflammation was getting worse in Ben’s pulmonary valve where Ben’s body met the donated cadaver valve.   So the Melody Valve was placed.  The inflammation has returned, but . . . it is yet at a point that requires surgical intervention.  He is on the bubble.  So no better. no worse. Stable.
  2. Ben’s kidneys are currently in Stage 2 renal failure.  This sounds worse that it is.  His kidneys were damaged during the last two open heart surgeries, which can happen when you are placed on a bypass machine.  His kidney are currently working between 70-80%.  This will NOT get better.  Over time and has he ages, it will get worse and to the point of dialysis.  Hopefully not for a long, long, long time.
  3. Because of the kidney damage, Ben has chronic high blood pressure.  He has had this since he was six years old.  We all know what high blood pressure does to a person’s body over time.  He is medicated.  The medicine serves two purposes.  It helps control his blood pressure and it helps take some of the pressure off of his heart to work as hard.
  4. Ben has dysautonomia.  Specifically, he has POTS,  Postural orthostatic tachycardia syndrome.  After Ben’s last open heart surgery, he began to experience VERY unusual symptoms and was having a ton of difficulty recovering.  Ben has always had unusual health issues and complications.  But after his last difficult surgery, the doctors began to pay more attention.  After seeing a ton of different specialists over the last five years, he has finally been able to get into the renowned Dysautonomia Clinic in Houston with Dr. Ian Butler.  This diagnosis has been a life saver.  Ben has missed so much school because of unusual health symptoms that were debilitating causing him to go on homebound for several years.  Last year, he first was able to get into one Dysautonomia specialist, Dr. Burkholter. This doctor did miracles.  He started Ben on a variety of new supplements, exercises, and IV infusions that kept Ben in school for a full year! But this doctor left his clinic less than a year after arriving, the rest of the doctors at that clinic refused to see Ben as a patient because he was “too complex”.  And then after years of trying to get into Dr. Butler, we succeeded.
  5. Ben has also been diagnosed with motility problems in his GI tract. He has had heart burn since he was born.  It become increasingly problematic after Ben started kindergarten.  He would just get up and throw up in the trash can after he would eat anything, and then go back to his smiling self.  The school didn’t like that.  I wonder why? ;).  The end result of this ten year saga of trying to figure out why he would go through periods in his life of throwing up constantly was a diagnosis of motility issues due to Dysautonomia.  He would periodically get gastroparesis after suffering from a stomach virus.  Ben does have damage to his esophageal lining due to the chronic heart burn.  Ben has been able to wean off of one of his stomach medications in the last year.  Mostly due to changes in his diet.
  6. Ben has also been diagnosed with dyslexia, ADD,  and other learning disabilities (mostly short term memory loss).  So he has difficultly in school.  He is unmedicated for this because of his heart.  Some of the diagnoses, like ADD, could be caused by the dysatuonomia.  Dysautonomia and specifically POTS, can cause a major decrease of blood flow to the brain.  In particular, Ben’s body is more sensitive to this issue.  It is very complicated and I’m glad we have a doctor to help.

Those are the main issues. The main ones.  Not the only ones.

Ben currently sees 10 different specialist through the year. Ten.  10.  That is every finger on both hands.  Think about the impact that makes on our family.

These are the following phrases that we OFTEN hear about Ben from doctors:

  • Interesting.
  • Conundrum.
  • I have no idea.
  • I once read a study about this.
  • He is a puzzle.
  • He is a bit of mystery.
  • I don’t know.
  • There is nothing I can do.
  • Let’s run more tests.
  • He’s too complicated.  I can’t help him.
  • Rarer but still have heard:
    • Come back to me when you are ready to do surgery.  Until then, I’ll just keep refilling his medicine.  You don’t have to see me any more.
    • You have reached the end of western medicine. Have you tried some Eastern therapies?

Having said that . . . we have had other doctors who have said:

  • We are going to get to the bottom of this.  No one should have to go through life feeling this way.
  • I have a 100 tools in my tool box.  If this doesn’t work, we will try something else. We will keep at it until we find one that works.
  • I was thinking about Ben last night when I was going to bed and I had an idea.  So I got up and I’ve been reading a ton of medical literature about ____.  I think this might be Ben.  Let’s get you into a doctor that specializes in this and see what she says.  I’ve already called her and talked to her about Ben’s case.

These doctor’s are rare gems.  I love each and every one of them.  They give Chris and I hope when we had none.  (By the way, the last comment is from our pediatrician.  She is the absolute best doctor in the entire world.  She has been seeing the kids since we moved here, and she is the best team leader for Ben that I could have ever asked for. She has all of his doctor’s cell phone numbers and isn’t afraid to call them.)

As soon as we have been able to cobble together a great team of specialist who have managed to work together, Ben starts to age out of the pediatric world.  Scary.  Terrifying.

In the last two years, Ben has started seeing a transition team at Texas Children’s Hospital.  This includes seeing a nurse and a social worker.  This team helps Ben to transition to adult doctors and also helps Ben to learn how to manage his own health.  Like learning about his medications (names, dosages, and why he takes them).  Being able to explain to someone else what his medical issues are.  Making his own appointments. etc. etc.

Ben’s health is in a constant state flux.  Things change all of the time.  So until the next change this is the current state of Ben’s health in a shortened version!

And I would like to start with this caveat . . . I don’t know what the answer is.  I have pondered this question for years.  Over the last few months, this question has again come to the forefront of my mind.

Here is the question.

At what point is it ok to ask society to help you?

All three of my children have been diagnosed with chronic illnesses that are serious.  The seriousness of each child’s illnesses vary.  My son has the most significant life threatening illnesses.  He was born early.  He had his first open heart surgery at 2 1/2 years old.  He has had many more surgeries and procedures.  He has kidney disease.  He has significant GI issues.  The list goes on and on.

He has limitations placed on him throughout his life.  But his dad and I always wanted Ben to be able to participate fully in the world around him as much as possible . . . without causing inconveniences to his friends and classmates.

So if there was a field trip, I always went along so that Ben could still go.  And yet, when he got tired or it got too hot or whatever, I would take Ben aside to take care of his needs.  I never wanted to burden the teachers and students.  They shouldn’t have to miss part of the field trip to accommodate Ben.

I am a truly believer of pulling up your own boot straps and taking care of yourself without asking for help.  Probably because that was how I was raised.  God forbid, my grandmother EVER asking for help.  She insisted on cooking her own food even when she was severely blind because of macular degeneration.  She figured out how to be self sufficient.

So now we have COVID.  Society is sick of being in quarantine.  For many, money is running out.  For others, they don’t want anyone telling them what to do.  Society got its forced two week stay-cation and it is ready to get back to work.  I don’t blame society.  It is part of the “Pull Up Your Own Bootstraps” philosophy which I whole hardheartedly endorse.

So what do we do?  We, as in those that have severely immunocompromised family members or are themselves seriously ill.

When society was locked down, Ben didn’t go any where.  He has not left the house (minus one trip to an empty church building while wearing a ton of layers of PPE) except to go see his grandparents who live less than a mile away (who are being extra cautious just so Ben has another place to be).  But I, as in Ben’s mom, felt somewhat comfortable because society was all working together to keep themselves and everyone else safe.   I was not as scared about becoming sick because society was wearing masks, standing six feet apart, and taking other precautions to avoid becoming sick.  We still spray and wipe things down.  We still immediately come home from being in society and change our clothes and take a shower.  That was when society was also taking care of following social distancing.

Now . . . now (I say with a major catch in my throat) society is blatantly flouting the social distancing rules.  I have gone into stores, and most people are NOT wearing a mask.  I drive by stores to determine whether to stop in and run an errand and see people lining up with NO social distancing from each other.  So what do I do now to protect my family,  because ultimately THAT IS MY JOB? We have decided to not go into any stores.  We are doing deliveries.  When we can’t get something delivered, we go into a store with major strategy in place.  Stores in the city of Conroe are avoided (NO MASKS. NO ONE TRYING.)  We chose stores in zip codes that strongly suggest social distancing.  We put our money where our mouth is.  That is my ONLY choice.

But this is in regards to buying the supplies that we need to live.  What about the rest of it?  The living part.  Ben has become so isolated.  Now with the number of active cases in our county still on the rise, restrictions have been lifted, and the vast majority of people ARE NOT social distancing. We are becoming more isolated.  My question is again . . . when is it ok to ask society to help you?

It is my choice to keep Ben home.  Because the idea of him getting sick scares me to death.  It is my choice to wear a mask in public.  It is my choice to take all of the sanitizing steps that I take. But is it fair to put Ben into a prison because of society deciding not to want to wear masks?

When is it ok to ask society to help me out . . . to help Ben out . . . by trying to keep germs to yourself?  He has not done anything wrong.  And yet he is being punished.

I really don’t know what the solution is.