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Archive for February, 2016

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.

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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!

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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. 

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