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One year ago, Ben and I sat in this same room and watched the 4th of July fireworks from our window.  He had been readmitted to the hospital for a fever after he had open heart surgery.

Today.  We sit in the same room after another successful heart “procedure”. How did we get here?  A year ago, Ben’s surgeon told us that we would be good for another 10 years of any heart intervention. Today, Ben’s surgeon told us that today was successful but that we are locating at several more heart “procedures” in the future.

A lot has happened in a year. The good feeling that we had after last year’s surgery left us after another month in the hospital.  Then we regained that positive outlook when we sent Ben back to school and our world seemed to return to a Lake kind-of-normal. Then by Christmas our world started to slip and that positive medical outlook for Ben went away again.

Then in January, Ben’s health took a nose dive.  The stenosis in his pulmonary artery had grown, his dizziness was so bad that he couldn’t attend school anymore, and started our steep decline in the crazy science of medicine.

The best part about doctors are that they are inquisitive and curious.  They like puzzles. Ben was certainly a puzzle. We saw 7 specialists in four months.  They all performed a ton of testing and no one could tell us what was causing Ben’s problems.  When doctors get frustrated because they can’t solve the puzzle, they declare their organ system as good and not the cause of the problem, and send us off to yet another doctor to investigate another organ system.

Today, Ben received a new pulmonary valve.  It is called the Melody valve.  He also received a stent in the pulmonary artery.  The good news is that he was able to receive all of this work through the cath lab. Less intervention. Easier recovery.  Perfect for Ben.

The doctor stated that it was good that we intervened. The first thing that the doctor does in take measurements of the heart while they are physically in the heart.  The pressures in his right ventricle were 90% of his blood pressure.  This is bad.  Much worse than the echo revealed.  His heart wall has thickened significantly as well.  This explains why he was so tired and exhausted.  His heart was working overtime.

But this doctor was wonderful at not sugar coating the future for Ben.  There was no 10 year prediction of no surgical intervention.  No promise that Ben will be able to be a normal boy again.  The doctor was wonderfully honest.  He predicts that Ben’s health will not prevent him from living a long and fruitful life.  But . . . this valve is so new that there are not long term studies that she how long this valve is good for.  It is not an adult size.  He will need another one as he gets bigger.  He continues to have another narrowing in the pulmonary artery.  They fixed the one at the donor site, but they will probably have to intervene in the future with another stent. He could possibly start to have dilation in the aorta because of the Ross-Kono procedure and may need a replacement of the aortic root in the future.  Possibly.

Here’s the deal.  Chris and I do better if we know all of the possible outcomes.  It is better to prepare for the worse and hope for the best.  It is a lot harder to deal with health issues with Ben when you feel as if they have come out of no where and you are blindsided.  That is how it felt for most of this year.  Blindsided.

The doctor asked us today what our goal was for Ben.  What sport were we trying to get Ben  playing again?  We have none.  He has been living a life with so many rules that regulate his ability to be physically active that I don’t know WHAT he would want to do if he felt like a normal boy.  Does he even know how it feels to be a “normal” boy?  You know.  The ability to run and play without thought to being hydrated appropriately, chest pains, exhaustion from the simplest of exertion, etc. Wow. What a wonderful life that would be.

Our goals are not even that huge.  I told the doctor today that I just want Ben to go back to school next year, to have enough stamina to make it through a day of school, and maybe . . . just maybe . . . be able to ride a bike in the summer with his friends.

I think that Ben wants this too.  We pray, not for normalcy, but for Ben’s health to be abnormal for him.  In other words, like most children.  Free of restrictions.  Free of fear that some of actions could cause harm to his body. Free of constantly being poked and asked for samples.  We want to assign him chores.  Teach him to mow the yard. Ground him for hanging out with his friends too long and missing curfew.  His sisters want to tattle on him and not have to feel sorry for him.  They want to tease him and love on him and not have to worry about Ben’s health or something bad happening.

But Ben told us something the other day.  He told Dad that most of his friends have been made because of things that are wrong with him.  He has learned to make the best of the situation.  He is making lemonade out of the lemons of life. We have learned so much from “the boy.”  His strength makes us stronger as parents and most importantly as humans.  He will still admit when he is scared and talks about those fears that we all think about but are too afraid to say out loud.

We will learn from the latest procedure.  Not just how to navigate the healthcare system, but how to better handle ourselves emotionally.  How do we get through this without losing ourselves in the process?  How do we hold out hope when things seem to be going wrong?  Our faith brings us pretty far.  But it also the people that God sends into our lives to let us know that we are cared for and loved and are not forgotten.  If God can give hope and promise to “the boy” that there is a future for him without all of the medical issues, then how can I not try to have the same.

 

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We visited the new ENT yesterday and he was very nice.  He performed some in office testing and doesn’t think he has that rare syndrome.  But . . . we have to do a CT scan to absolutely rule it out.  This ENT (like so many doctors before him) isn’t sure what the cause of his dizziness is.  He thinks that Ben is “complex” and it could be all of his health issues contributing to it.  Ugh.

The bad news is that he doesn’t have an immediate solution, and he said that it could be that Ben will just have to learn to live with the dizziness and not let it impede his life (yeah, right.) The good news is that he isn’t giving up hope and will order some additional testing to see if we can come up with a solution.  So he is ordering a sleep study, another balance study, and a CT scan.

Chris’ first reaction was, “you mean we just spent $1300 on an MRI that told us nothing, and now we have to do MORE expensive testing.” Yes. Thank God we have insurance.  Even if our portion is huge, it could be SO much worse. What else are we going to do?  This isn’t resolving on its own and Ben is miserable.  As parents, Chris and I are always balancing whether each test is appropriate for the problem.  We don’t want to do invasive testing if it isn’t absolutely necessary.  The boy is poked and prodded so much, that we try to limit those more invasive tests, and only do them when the health issues and potential results are worth it.  After this summer, seeing Ben get IV after IV after IV makes us even more cautious.  He now has scar tissue inside his arms from all of the blood draws and IVs.

But the tests that have been ordered are ok.  And we feel that the reasoning behind the tests are valid towards finding a solution.

So on Friday, we go downtown to TCH to have a 24 hour blood pressure monitor put on.  Monday, we go for a CT scan.  And I’m waiting to hear back for the scheduling of the other tests. The other good news regarding this new ENT is that he has ordered all of the testing to be done in the Woodlands. I could have hugged him when he said that!

The other news is that Ben’s renal doctor called.  She is so sweet and cares so much about Ben.  So we are again playing with some medication and she is ordering the 24 blood pressure monitor.  I asked if I could just drive down and pick up the machine.  She said that it isn’t protocol but that she could try to find a place closer.  Unfortunately, Cypress and Katy aren’t closer.  I can’t wait until the new TCH hospital in the Woodlands opens up.  That could be a huge life changer for Ben.  But until then, we will continue to trek down to the Medical Center to get Ben taken care of.

It was good hearing from all of the doctors but frustrating that we aren’t any closer to an answer.  Chris and I joke that my job is taking care of Ben and taking him to all of his testing and appointments.  It is so true. But I wish it wasn’t.  Until that day that this part of our journey is over because Ben is healthy, we will trudge along this course that has been set before us.  The upswing is that Ben’s favorite way of feeling better is sitting next to me on the couch while we snuggle.  That is my FAVORITE part of my job.  It makes all of this worth it.

Frustration

It has been almost two weeks since the MRI. We haven’t heard from any doctor about the results.  So I am frustrated.  Full on frustration. Border line psychotic today. The mama bear inside of me is rearing it’s ugly head. This is has been going on two months!

The boy is getting progressively worse.  Now he never leaves the house.  Not for school, not for church, not for fun.  Nothing.  Every time he does any sort of exertion, he gets extremely dizzy.  And it isn’t immediate.  Because there are no immediate symptoms he can push himself too far doing an activity and then he becomes extremely dizzy and sick for the WHOLE next day.  Now he is scared to do anything because he isn’t sure of what the effect on his dizziness will be.

I knew that I had reached my tipping point when he couldn’t even make it through a Skyping session with his class.  He put his head down 15 minutes in the lesson and had to go lay down or he was going to pass out or throw up.  He LOVES this connection with his friends and classmates.  He looks forward to it all of the time.  For him to need to lay down in order to not get sick and miss the rest of the lesson is horrible emotionally.  I was SO frustrated after that episode that I decided it was time to start calling ALL of his doctors.

Yep. My sweet voice called every doctor to find out the status of everything according to them.  The pediatrician hadn’t received the results yet.  The neurologist was out of town all of last week, so he hadn’t reviewed anything yet.  And I had to send an email to the cardiologist.

Seriously, some times the squeaky wheel gets the grease.  And in this case, it did.  This morning I have received nine phone calls from his doctors.  Nine.  Yes, the MRI results appear ok. The pediatrician and cardiologist want Ben to start Cardiovascular Rehab at TIRR. They think that because he has been so inactive for so long that he is out of shape and can’t handle activity.  The cardiologist is moving to schedule his stent.  She also wants to speak to his renal doctor about possibly doing a 24 blood pressure monitor and some other testing. The pediatrician wants me to go ahead and schedule the balance study (side note:  I called to schedule the study and the ENT had still not sent the order over to the balance clinic. He told us in January he would do it. Ugh! More phone calls to ENT with a frustrated voice.) Then the pediatrician calls back and says that she read about a rare disorder in the ear and she called an ENT in the Woodlands and he has agreed to see Ben today in order to look into this possibility.  It may just require some in office testing and a CT scan to look at this rare syndrome.  So hopefully between Ben’s pediatrician, cardiologist, neurologist, nephrologist, old ENT, and new ENT. They will figure it out.  Otherwise, I have threatened to kidnap them and lock them up in a room until they figure this out!!!!!  They laugh at that. I, on the other hand, am NOT laughing.

So we are seeing some momentum.  Thank God.  I having been praying for this for so long. He can’t live like this.  He is miserable.  We just need someone to help him out.  Please help I plead to any MD that will listen to me.  Please help I plead at every quiet moment in prayer.  Please help I plead to anyone and everyone.  Please help.

Today I feel like help is on the way.  Thank God.

 

So this has been a week of medical visits and getting back into the school routine, just at home instead of school.

On Monday, Ben saw the neurologist.  The doctor was very nice and Ben feels confident that this man will help him, but it was still a discouraging visit.  This doctor thinks that all of Ben’s dizziness is caused by his heart.  I told him that his cardiologist believes that his heart problem is exasperating the issue but not the cause.  He said that all of Ben’s descriptions of his issue sounds heart related.  Very nicely, I told him that there are days that I want to take all of Ben’s doctors lock them in a room and tell them to figure it out.  He said he understood and smiled.  He said we will get to the bottom of this.

The good news is that he is part of the Memorial Herman system.  So he is presenting Ben’s case to his fellow physicians at that hospital.  So hopefully now we will have great minds at Texas Children’s Hospital and Memorial Herman Hospital trying to figure this boy out.  That is the only good part of that day’s visit.

On Wednesday, Ben had a series of MRIs done at Texas Children’s downtown.  The poor guy was in the machine for four hours and was suppose to be in for more, but they figured out how to consolidate some of the tests so he had four MRIs instead of six. But being in that loud machine all of that time and having a magnet spin around you, really messed with his head so he couldn’t even walk the rest of the day.  Of course, he got to wear special goggles to watch movies and I got to count the ceiling tiles while holding Ben’s hand and foot.  It is hard being inside that machine for so long.

On our way out of the elevator when we finally finished at 6:30, we ran into Dr. Altman, his cardiologist.  She greeted us and asked how it went.  She said she had stayed around while Ben’s imaging was being done (she was the ordering physician) to  make sure that it all went well.  Ben told her that he was really loopy!  She told me that she isn’t sure what to wish for regarding the results of the MRI. She doesn’t know if she wants them to find something or not.  We told her that we are hoping for an answer but only an answer in which the solution is medication or time.  She said she would hope for that too.

But it has been a long week.  Many frustrations.  No answers. But we still have hope that a solution will be found and Ben’s life will return to normal.

An update on Ben

Many of you know that Ben has had a small set back with his newly remodeled heart.  My last update I shared that Ben has developed a pulmonary obstruction.  Since January, we have been on a medical whirlwind with Ben.  I haven’t wanted to post anything because I kept thinking that this would end and I could tell you the story in a nutshell.  Instead we have been dealing with it for a month and the story has even reached it’s climax yet.

Over Christmas Ben got sick.  It first started as a cold with some wheezing.  We took him to the pediatrician and got him some good drugs and he was on his way back to good health by Christmas day.  A few days after Christmas Day Ben began to run a fever.  Of course, we immediately took him to the doctor and he was diagnosed with strep throat.  Again, a round of good drugs were given and he was on his way to normal a week later.  At our followup checkup with the pediatrician we mentioned that he had experienced some chest pain the previous weekend, that we had already contacted the cardiology and was waiting for a call back.  The pain had gone away so we weren’t overly worried.  At this visit the pediatrician felt that his murmur had increased significantly since she had last seen him a few weeks prior.  Our pediatrician is very thorough and is especially careful with Ben.  She immediately called Ben’s cardiologist.  Within a few days, we were making a trip downtown to TCH for an echo of his heart and a EKG.

While we waited to hear back from the cardiologist with the results, we took Ben back to the pediatrician for a Pneumococcal 23 vaccine.  He had dealt with so many lung issue between the long bout with pneumonia and collapsed lungs during his hospital stay that we wanted to consult with our pediatrician on whether this vaccine would be a good idea for him.  She agreed and Ben received the shot that morning.  Everything was going well and we were on our way to school, when Ben started to become really dizzy.  So we got to school and immediately went to the nurse’s office to take his blood pressure.  It was ok. So I called the pediatrician and told her about the dizziness.  She didn’t know what would be causing it, but she told us to take him home and have him drink 96oz of gatorade.  In the meantime she would call the cardiologist.

No sooner did I get off the phone with the pediatrician than Ben’s cardiologist called.  She told us that the results from Friday’s echo showed that his pulmonary obstruction was still there but had not increased since November.  We told her about the dizziness and she said that it should not be caused by his heart and that I should speak to the pediatrician about it.

So the pediatrician and the cardiologist spoke and couldn’t agree on a cause of the dizziness.  So . . . . the pediatrician said that she still thinks that something is going on with his heart regardless of the echo results.  She decided to call Ben’s renal doctor and talk to her about the dizziness.  The end result of that was that we cut one of Ben’s blood pressure meds in half.  And could only give it to him if his blood pressure was under 120/75.

So we had a plan.  Unfortunately the dizziness didn’t go away.  In fact, it got worse.  Until a few weeks later, we went to the pediatrician again for a followup to the dizziness.  She told us that the next step might be that we see an ENT to rule out that that part of his body was causing this issue.  And again more phone calls were placed to the cardiologist.

On our way back to school, Ben’s dizziness began to get worse.  By the time we got to school, it was at a 9 (on a 1 to 10 scale).  We went straight to the nurse’s office.  Ben laid down and said his dizzy level was now at a 10 and that he felt like passing out.  I asked the nurse for the manual BP cuff and took his BP.  It was so low that I asked the nurse to do it, because I was surprised and suddenly not sure of my abilities to take a BP.  She took it and she said it was 90/28.  Well, crap. That is low in a very scary way.  So I immediately called the pediatrician and spoke to her regarding what was going on.  She told us to give him gatorade to drink, keep him prone, and to check his BP again in 10 minutes.  Meanwhile, they were going to call his cardiologist again.

Of course, Chris is out of town at this moment.  I kept calling him and he didn’t answer.  So I finally texted him Ben’s BP and of course, he immediately left the meeting he was at and called.  He told me to call 911 and to take Ben to the hospital.  I told him what the pediatrician said to do and he said that was fine, but if it didn’t get better I was to take him in to the hospital immediately.

When we took Ben’s blood pressure the next time it was 98/38.  Not good, but at least it was moving in the right direction.  We stayed in the nurse’s office for an hour getting Ben’s BP to at least a good enough number to get us out of danger and to get Ben home. That boy could have peed the color of his gatorade by the time we got home!  His body was full of fluids!! But at least he was well enough to go home.

This episode meant that we were to make another trip downtown to TCH for a visit with the cardiologist and another echo, X-ray, and EKG.  By the time, we meet with the cardiologist, we had seen Ben’s ENT and we were able to rule out his ears as a cause of the dizziness.

We met with the cardiologist and we came away with good news and bad news.  The good news is that she doesn’t think his heart or BP is causing the dizziness.  She believes that he has an underlying issue that is causing the dizziness but that perhaps Ben’s complicated health issues may be making the dizziness worse.  I was glad that his heart was not causing the dizziness, but I was sad that we still didn’t have answers for Ben.

The bad news was that the pulmonary obstruction in Ben’s heart had increased to a point that she felt that he needs surgical intervention. She thinks that it can be fixed with a stent.  So she will be presenting his case to the cath team at TCH.  But she said that he can’t have the stent until he is cleared by neurology.

Poor Ben just started crying.  All he wants is to feel better.  He is sick of feeling like crude.  He just wants to be normal again.  At this point, he had only been to school a few days in the last month.  Every time, he attempted to go to school he would get too dizzy and would have to go home early.  Or he would force himself to stay all day only to wake up the next day really sick.

Our pediatrician got us an appointment with a pediatric neurologist in the Woodlands. So we see him next Monday and on Wednesday he will go to TCH downtown again for 3 hours testing in the MRI machine.  He is having a MRI, MRA, and MRV of the head and neck.  In the meantime, he started homebound school today.  He sat by the front door waiting for his teacher to come.  He is so excited about school!  He said it isn’t the same, but he thrives on the mental challenge of school instead of resting in his room all day.

There is the medical side of what is going on and the mental side of what is going on.  Ben is so isolated and lonely.  Even going to church is hard for him.  He will have a great time while there with friends, but will then come home and get really sick.  And now he is sleeping 12-14 hours a night especially on the days that he has more activity.  The poor guy is just exhausted.  And I know that he is scared.  He doesn’t like to be alone in the house, so if I leave to go to the grocery store or take the girls to school.  I have to be home when I say I will or he will start calling me.  I can’t blame him.  He knows that he isn’t feeling well and that he is facing a heart procedure and lots of testing to figure out his dizziness.  He is just scared.

So we hope for answers.  We hope for this to all go away.  And we most especially pray for normalcy.  This is a tough road that we are on.  We thought last June that we would be in a totally different place than we are today.  We had hoped that most of Ben’s medical drama would be over and that 2016 was going to be a banner year.  I haven’t given up on that dream yet, but the start of this year isn’t going in the right direction.  So we have to work on getting this turned around!

On the other hand all of this drama has lead to a new form of therapy for Chris . . . home improvement projects!  He says that he can’t fix his boy right now but he can certainly fix his home.  (Of course, we would have even had to do that if it hadn’t been for the toilet tank breaking on the second floor and flooding the first floor.  And then the toilet leaking again two weeks after Chris drywalled the ceiling from the last one.  Or the fact in the middle of fixing the ceiling and wall from the flood that we figured out that we had significant termite damage (old damage nothing live) and that the only thing holding up the back of the house were the bricks.  So that entire wall had to be replaced.)

Hopefully in the next few weeks we will have great news to share regarding Ben and that either we found answers to his condition or that he miraculously was cured.  I am good with either!

Quote of the day

I look over at Ben in the passenger seat of the car and he is sitting there with his fingers crossed and his eyes squeezed shut. Curious, I ask him what he is doing. He says, “I saw a shooting star, so I am making a wish.”

“That’s cool. What did you wish for?”

“I wished that my heart would be healed, so that I wouldn’t have to have any more surgeries. That would be an awesome miracle!”

“I agree that would be an awesome miracle.”

“My friend Jaxxon says that if you can remember exactly what the shooting star looks like you can make multiple wishes.”

“I have never heard that before. That is pretty  cool! What else would you wish for?”

“I wish that I could also have super powers. Because then I wouldn’t care if my heart didn’t work so well. But I bet I get both!”

Me too, Ben. Me too. 

An early morning at Texas Children’s made for some tired people in the Lake house yesterday. We were all exhausted bother physically and emotionally. We heard some unexpected news from Dr. Altman. 

First the good news. His aortic valve looks great. He has minimal leaking in his aortic, mitral, and pulmonary valve. And his heart wall has returned to normal size. 

Now the bad news. Ben has developed a narrowing of the vessel above his pulmonary valve. This has happened quickly. In August he had a gradient of 11mmHG and now he has a gradient of 35mmHG. In comparison, 20 and under is normal. Numbers in the 40s and 50s require intervention.  She believes that the narrowing is due to inflammation. But it is hard to tell on an ultrasound. So the narrowing could be due to calcification. The pulmonary valve is a donor valve. Where the inflammation is taking place is at the bottom where the donor valve and Ben’s tissue meet. The inflammation could be due to an immune response to the foreign tissue in his body. His valve is not rejecting she said. It is working great. But Ben’s body hasn’t made friends with the donor tissue yet. So we go back the beginning of February to check on it again.

What can be done to fix this? If the narrowing is due to inflammation then Ben can have surgery to place a stent to open up the vessel again. This would be done in the Cath Lab. If the inflammation is due to calcification, then been require open-heart surgery again. I asked her what the odds were that this could go away, and she said that this was an unlikely scenario. What she normally sees is that either the inflammation plateaus and stays where it is or it gets worse. She said two things that were funny yesterday regarding Ben. One, if something were going to happen it’s likely to happen to Ben. And two . . . When Ben’s heart decides to misbehave it tends to do it quickly.  For example, his subaortic  membranes, once they were discovered grew so quickly that we had to intervene with open-heart within six months.

On the other side of it all, she is concerned about Ben’s fatigue. And since fatigue is a sign of the stenosis getting worse, she wants us to rule out other causes of this fatigue. She thinks that his fatigue is due to his snoring. And that boy is a direct descendent of Chris so he is really good at snoring. So yesterday afternoon we visited his pediatrician and have started the process of looking at his adenoids, tonsils, and possible sleep apnea. We told the doctor that we wanted to get this all done by December 31 because we didn’t have to pay for anything medically right now. And she agreed to help us move quickly. 

So that was our report from yesterday. Emotionally it was not the news we wanted to hear. Chris and I are still processing all of it. We never thought that anything like this could happen. So the fact it wasn’t on our radar means that we had not mentally prepared ourselves for that news. Ben is mad. He is glad he doesn’t have to have surgery now, but he’s ticked at the fact that yet again something else has gone wrong. This is not a worst-case scenerio, we know that. The news could’ve been much worse. So we will take what we’ve been given and deal with it. It is what it is. So now we have to deal with it.