Why I hate cardiology appointments.

Yesterday was the day.  One of the 4 days a year I dread the most.  Parker’s cardiology appointment.  Don’t get me wrong.  We love our cardiologist.  We just hate what he has to say.  Then there is the pesky fact that I often find myself trying to translate what he is saying.  I often leave a visit wondering what in the hell he was trying to tell me.

The part that is worrying me the most is the fact that Parker’s EKG was not really any better than it was the last time we were there.  It was worse.  But it wasn’t better enough to say, “Look!” “The EKG really looks improved.!”

But I’m not sure how much to value an EKG anyway.  The one Parker had right before his last right heart cath read totally normal.  And we all know how THAT cath turned out.

During the entire EKG Parker kept trying to rip off the probes, sit up, and roll over.  The poor tech ran the EKG twice, but Parker simply upped his efforts the second time.

According to our Cardio, an EKG can show a change for the worse rather quickly, but take much longer to show a change for the better.  And maybe this EKG was still reflecting how sick he was a couple of months ago when it took two rounds of Cleocin to begin to get Parker healthy again.

Then again, maybe not.

There were a few highlights to the appointment.

Parker’s x-ray on the 21st showed his lungs looking better than ever.  WAY better than the lung x-ray just before his last cath.  It also showed his heart looking pretty much normal sized.

It also showed some peri bronchial thickening due to his asthma flare-ups.  And that damned atelectasis.

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We talked right heart caths.  And how this time after they insert a breathing tube, Day will also cuff Parker’s trach to make sure that he isn’t leaking oxygen from around his trach the way he did last time.

ahem.

We talked about how, in theory, less inflammation in Parker’s lungs may help with Parker’s pressures being lower in this cath.  But I’m not holding my breath.

As long as we can keep Parker’s pressures at a certain point we can manage his PH.  Those pressures go up and all bets are off.

One of the big things Parker has going in his favor is the fact that just pure oxygen can significantly lower his PH levels.

Day also mentioned that it could take another year or so for Parker’s lungs to completely heal from all the damage they sustained over the years from the reflux and aspirations.

We’ll be scheduling a cath sometime after Parker’s FEES next week.   We need to check and see if we need to make some medication changes, and we’ll only know that after we check to see if the meds are still working…..which requires a right heart cath.

Next up was a call to Pulmo who also reviewed the lung x-ray.  She feels that Parker is dealing with micro aspirations which is causing patches of atelectasis.   She wants Parker to be on his speaker valve as often as possible.  The valve changes the pressure and prevents Parker from aspiration on his saliva during the day.

She also put Parker on Singulair and suggested that there always be an air purifier where  Parker is.  We do have one in Parker’s bedroom, but it isn’t big enough to make a difference when Parker is in the upstairs or down stairs family room.  And to afford THAT one we held a yard sale last summer.

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I’ve had Oreck air purifiers suggested to me before because they are often what Dentist and Doctor’s offices use.  But the $499.00 price tag is way out of our budget.  So we’ll keep looking.

I’m going to be taking down the curtains in Parker’s bedroom, but there’s not much I can do about the carpeting in our home.  It’s gonna have to stay.

So, there you have it.  All the info that is currently making  my head want to explode.

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Luckily, Parker doesn’t seem too concerned about any of it.

I’ll spend the next few days trying to figure out what I should be focusing on.  What is the important stuff and what is the chaff that I just allow to blow away.

It’s the kind of thing that can literally overwhelm a girl if she’s not careful.

And now now you know why I hate cardiology appointments.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. You are doing the right thing by venting about it; that alone can help with the feelings of frustration and confusion (not mention isolation). You are a brave strong mama, and just like you said, Parker loves his life and is thriving because of you and your dedication to his overall health.

    Keep on truckin mama!

  2. Janet says:

    Tammy,

    Remember, you are doing the best you can based on all the information you have today. There is lots of guessing with Parker – for you and your family and his medical team.

    I wonder if any of what the docs have learned with Parker has helped them help another child? I bet it has.

  3. I just love your blog! You say all the things I want to say! ;)

    My daughter suffers from that damned atelectasis too. It puts her in the hospital every few months.

  4. Parker and you are in my prayers, Tammy. Small (to no) comfort but you depict the issues and emotions very well.

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