Archive for October, 2021

I see . . .

a therapy cat . . . who occasionally hisses, but always comes to sit with us at the table during school

a bowl of fruit . . . an attempt by the mother to encourage healthy snacking

a much smaller bowl of candy . . . an attempt by the mother to bribe her children after she realizes that she is dealing with teenagers and can’t handle toddler tantrums in adult sized bodies.

a carefully crafted schedule on the wall . . . the mother of the house’s OCD is struggling to find a method to keep her ADD family on schedule, so she moved from writing the schedule down to making the schedule with laminated blocks mounted on magnets. It is a good thing that she knows that failure is inevitable and embraces the idea of flexibility.

two young adults . . . who will soon be out of the house and on their own, so the mother is trying to appreciate the time she has with them. even if it is just homeschooling at the former dining room table . . . now labeled, “The Schoolroom.”

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Ben’s medical drama started when he decided to show up at 34 weeks in a town hospital without a NICU or the capability to handle an early delivery IF something were to go wrong. AND it all started on a morning where Chris had a funeral and burial ceremony to preside over (there aren’t any substitute pastors for that kind of job). So the church secretary had to drive me to the nearest hospital with a NICU 1 1/2 hours away.

I say all of this to get to the following point . . . Ben doesn’t know what life is like without all of the medical drama. Ainsley was born into this world. She was one month old when we found out that Ben needed open heart surgery. Madie doesn’t remember a time when she wasn’t worried about her little brother.

I am writing this during Dysautonomia Awareness Month. I have been writing and posting about the diagnosis of dysautonomia for all three kids. It is certainly one piece of Ben’s puzzle. But it is still only ONE piece.

Getting diagnosed with dysautonomia has been life changing. It explained so much of the nuances of Ben’s illnesses and symptoms. But it is only ONE piece of the puzzle.

  1. Ben was born with congenital heart defects. The main one being an aggressive sub aortic membrane. It took 2 open heart surgeries (2006, 2009) to finally stop it from growing back. The 3rd open heart (2015) was a Ross-Konno Procedure. The cadaver valve that they replaced for Ben’s pulmonary valve started to fail and so a year later (2016) Ben received the Melody valve. His heart is STABLE. Not cured. He still continues to have other problems but so far no intervention is necessary.
  2. During Ben’s last two open heart surgery, Ben’s kidney were damaged. This is not uncommon when someone is placed on the heart lung bypass machine. He has had high blood pressure since he was six years old. He continues to have it. He kidneys have some issues architecturally which doesn’t help the situation. Ben is currently in Stage 2 kidney disease. He was stable for a few years, but this year his kidney function has dropped 20%. His renal doctor is working on that one.
  3. And finally, we like to call the following a tertiary issue. Ben was born with GI issues. He threw up constantly as a baby. It never really stopped. It just ebbed and flowed. It didn’t really become a problem until he started school. For some reason (insert eye roll here), the school felt uncomfortable having a kindergartener who threw up after lunch. (BTW, we were totally supportive of the school. What teacher wants a kid who vomits in the trash can every day? That’s gross.) So we needed to find out why . . . and that led us down the path to GI. He has severe acid reflux. He’s been on meds since then and we are still working on finding a way to get him off all of the GI meds.

I tell you all of this so that you understand that getting the dysautonomia diagnosis was huge but it doesn’t suddenly cure him. None of the previously stated issues will go away if we keep his dysautonomia under control. BUT keeping his dysautonomia in control helps our doctors focus on his three main issues. Because when the symptom is severe dizziness . . . can you see where the problem is? . . . could be heart. or kidneys. or stomach. Making sure that the dizziness isn’t one of the first three is expensive and time consuming.

For the average kid, the first three issues are enough. But you add in the fact that Ben had dozens of other issues that we couldn’t figure out and had to make countless trips to doctors, clinics, hospitals, etc. Getting lots of testing done. Some simple (x-ray) and some complex (endoscopy). With lots of helpful ideas in between. Like super strict diet with over 20 avoidance foods (gluten, corn, coconut, oranges, apples, and on and on). Or twice a week physical therapy.

And the list of medical drama continues.

Ben has been saddled with enough “crap” for a lifetime. His sisters have also had their fair share. Like did you know that Madie didn’t talk until she was over 3. I mean, she “talked”. I could understand her. But no one else. This girl was so smart that she knew what language was suppose to sound like so she would jabber with starts and stops, inflection, etc. But very few ACTUAL words. Her verbal IQ was tested at 72 and her nonverbal was 125. See the problem?

One family should not have to deal with all of that. But we do. Every.single.day.

I’m lucky and blessed. My husband supports me. My family is always there. I mean ALWAYS. My children’s issues are not terminal (thanks to current medical technology). Their medical problems do not require 24/7 nursing care. They WILL be positive contributing members of society. I have a strong faith.

Lately, there have been people out there is my world who have been particular harsh in their criticism of me. “You aren’t submissive enough to your husband.” “You come across too harsh.” “You are not a team player.” And so much more. It has become so toxic for me.

Some of those same complaints by these people are the strengths that I call upon in times of trouble in our medical world. These attributes that these other men feel are my “downfall” are the very things that make me a good mom.

I refuse to say “yes” to every test or procedure that a doctor asks us to do. I WILL advocate on behalf of my child if that is what is needed. My “team” includes my husband, my children, and other doctors. So my “team” may not equal your “team”. But by God, I am a GREAT team player. Because it takes my entire team to get through all of this.

And I have learned an important lesson in life. It is NOT my job to make a person feel comfortable when our life is anything but. Either you are or you aren’t. I don’t have the time or energy to put a “smile” on my face when I’m having a rough day just to make you feel better. I will admit that knowing that means that there are certain areas where my presence is NOT helpful (like church), so I’ve given up those areas. I’ve also had to give up some close friends because they required too much of my emotional time and energy. It is not my job to call you and tell you what the latest health updates are, etc. My time and energy needs to go to my family. I need people in my life who understand that my life is complicated and are willing to be there in the good and the bad.

It is taken 18 years to come to that conclusion. And a lot of heartache.

But I’ve made it this far. With lots of mistakes. And lots of therapy. I’m at the stage of motherhood where I am training my children to be adults who take care of their own medical needs. So part of that means: learning you medicine list including doses and why you take them, learning how to explain your medical history to the doctor, knowing how to make appointments, sign up for patient portals, etc. etc.

I don’t think I will ever be able to totally give up the title of “Mom to a medically complicated child.” But I’m looking forward to being just a member of the team and not the team leader. And I truly believe I will get there one day.

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Did you know that all 3 of the Puddles have dysautonomia?  It took nearly 10 years to finally get this diagnosis for Ben, and getting Ben this diagnosis has been life changing for our family.

Ben has always had bizarre medical symptoms that couldn’t be explained by any one of his multiple other medical problems.  We eventually started to call this “Ben-itis” when any thing medically unexplainable would happen. 

Like . . . Ben would start vomiting one day and couldn’t stop for months.  He could eat.  He could drink.  He would feel better for a while after he threw up, but nothing went down without coming back up.   

Or . . . he would get so dizzy that he couldn’t get out of bed.  Again, this would go on for months.

Or . . . he would run a fever.  Randomly. 

Or . . . he ended up wearing a boot on his foot for almost three months because we walked too much during a weekend trip.  And then he hurt his foot again the year after.  And then the year after that.  The podiatrist never could figure out why it kept happening.

Or . . . he had blood pressure that was both too high and too low at the same time.  130/54.  Yup.  The doctors had a hard time dealing with that one.

Or . . .  or . . . or . . . 

What do you think happens to a young boy during these “episodes”?  He misses school.  He’s stays in bed for endless days.  No friends.  Not much social life.  

Each time something would happen that couldn’t be explained by the routine specialists in his life (cardiologist, nephrologist, and gastroenterologist) we would have to take him to a new specialist.  Try ENT? Try A/I? Try this neurologist? Try this clinic?  

These mysterious illnesses stumped us as parents.  Seeing your child miserable is a strong motivating factor, so we, of course, did all of the suggested follow ups.  The scenario would go something like this:

General Doctor 1 would do a preliminary workup and say, “I’m not sure what’s going on, but these symptoms could be indicative of something with his heart or kidneys so call cardiology and/or renal next.”

Specialist Doctor 2 and 3 would run the standard tests (cardiac echo, EKG, blood work) and declare that it wasn’t his heart or kidneys.  At least one of the three doctors would make a suggestion on what we should do next.  

We would then follow up with New Specialist Doctor 4.  That doctor would order a lot of testing.  We would follow through with the testing.  Go back for followup.  

Every doctor would then say pretty much the same thing:

“The test came back normal” or “the test is clearly indicative that he has something wrong.”  “But we don’t know why. There is nothing more that I can do.” 

Or some version of the same story.  We would leave the office/hospital/clinic.  I would go to the parking lot. Put headphones on Ben and give him a movie to watch. And then I would call Chris and cry.  Or call my mom and cry.  Chris and I would declare we are done with the testing and doctors.  No we weren’t going to go back for another followup in a year. No we weren’t willing to do another test, but this time it was more invasive for Ben.  No. No. No.

This seriously happened so many times.  (And out of fairness to these doctors, most of them were at least brave enough to say that they didn’t have all of the answers and that they had hit a wall when it came to their medical knowledge. I respect that.)

At one point we just starting working with his pediatrician and therapist to help Ben figure out how to live as normal of a life as possible even though he felt like “crap.” 

You are going to feel like crap, Ben.  So how can we figure out how to keep you in school even if you feel bad.  What does that look like? 

For most of us, if we get sick, we go home, take meds, and rest.   Then we go back to life.  But if you feel bad every.single.day. you can’t follow that regimen.  Or you will never get out of bed.

Until . . .

We met Dr. Ramos, who was the first to mention dysautonomia. He couldn’t treat it, but he thought maybe that is what was going on with Ben.  Then we talked to Aunt Sarah (½ of Team Wallace who are brilliant medical professionals), Chris’ sister.  Then we spoke with Ben’s pediatrician.  Ok.  Medical professionals were starting to coalesce with agreement.  No one still knew what to do.  But as his pediatrician said, “If it walks like a duck and talks like a duck, then it’s a duck.” 

Then we found Dr. Burkholder.  The first dysautonomia doctor who was willing to treat Ben.  Several others refused to take Ben on as a patient because he was too medically complicated or their clinic wasn’t taking new patients. He saw and diagnosed all three with dysautonomia.  Ben started having weekly IV infusions.  Dr. Burkholder told us all about exercise and salt intake and drinking water with electrolytes.  

And do you know what happened?  Ben went a year without any major flare ups. None.  No missing school for a month, etc. 

Well then, Dr. Burkholder left the practice and the other neurologists weren’t comfortable seeing Ben.  So we went looking for another dysautonomia doctor.  

And then, another miracle occurred . . . all three kids got into UT dysautonomia clinic with Dr. Ian Butler.  The absolute best dysautonomia doctor EVER. (He had even trained Dr. Burkholder.) 

Dr. Butler was the first doctor to do any diagnostic testing on the Puddles.  All three went through tilt table testing.  And what do you know?  They officially all had a version of dysautonomia. 

Madie and Ben have P.O.T.S. (Postural orthostatic tachycardia syndrome).  

And Ainsley won the award for worst case of dysautonomia in the family.   Click here for Ainsley’s medical story.  

Now we know.

When we know better, we do better.  So we have reached a good point in the world of medical drama.  We have a good idea of how to take care of ourselves in order to not have flares.  We can know when we are about to _____ (faint, have a seizure, vomit) so we ________ (lay down, drink gatorade, consume large amount of salty foods).  

Of course, dysautonomia is not as widely known by the medical world.  There are not very many doctors who specialize in it or are willing to tackle a patient who has it.  All of the Puddles have come or are coming to the end of their pediatric medical world and it is time to move to the world of adult doctors.  And so far, we haven’t found ANY adult dysautonomia doctor in our area.  I mean we live within an hour’s drive of the largest medical center in the world.  And so far we haven’t found anyone to take over their care.  

But still . . . we know what the problem is, and we know how to advocate for their care.  And now dysautonomia is getting more and more attention. Why?  Long-covid.  I hate that more and more people are being diagnosed with it dysautonomia, but perhaps with more patients there will be more research.  Which will lead to more discoveries.  Which will lead to more treatments.  Which will hopefully lead to a cure.  

At least that it what I pray for.

It is Dysautonomia Awareness Month. So I write our story to share with others so that more people will more easily recognize the term “dysautonomia”. It is isn’t rare. It is really isn’t new. Some people are more affected by their syndrome than others. There isn’t a cure.

But for us, the Lake/Puddles Team, we have finally found some medical peace. We finally have some doctors in our corner who understand what is going on. And after so many years of frustration, that is a very hopeful feeling.

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