Living in the 1% | #MiraclesHappen

imageWell, Tuesday proved to be another eventful day in the life of our CHD Superhero.  Usually, when we tell doctors that we “live in the 1%”, we mean that if something can only go wrong 1% of the time, then it will happen for Reiss. However, this time was different and the news was amazing, to say the least.

Tuesday started with the usual trip to the Heart Center at Texas Children’s Hospital for pre-op appointments.  Reiss went through all the tests: height, weight, EKG, echo, labs, etc.  We then talked to almost everyone on her team from social work to anesthesiologists.   Our last visit was from Tammy, our Nurse Practitioner.

Tammy discussed with us the findings of the echo:

  1. The tricuspid regurgitation, which was listed as “moderate to severe”, was now just moderate. That is amazing!
  2. The leaflets were thickened. (Later, McKenzie mentioned this was very mild).
  3. The annulus of the valve was dilated

She was confident Dr McKenzie would be able to repair the valve with these complications, versus replacing the valve.

We left our meeting with Tammy still thinking Reiss would have surgery on Wednesday morning.  Dr McKenzie was still in the operating room, so we killed time before consulting with him.

When we finally met with him, he said he was “on the fence” about even doing the surgery.

What?

This was not the plan   I had a set of questions prepared about valves, heart transplants and new pacemaker leads.  I was caught off-guard and ended up calling Roy to put him on speaker-phone to help keep the conversation going.   Here is the reasoning McKenzie went through in regards to surgery.

  1. Her regurgitation had improved. McKenzie had forecasted it would deteriorate further by now.
  2. Her right ventricle (RV) dysfunction was listed as “mild to normal”, which  hadn’t changed. This means, her regurgitation decreased, adding more work to the RV, and the RV reacted by continuing to squeeze as it should.
  3. The surgery is a major surgery that will be hard on Reiss. If she is doing well, no need to go through the surgery.
  4. If he knew 100% that she needed a valve replacement, he would choose to wait.
  5. If he knew 100% that the valve was repairable and the ventricle would react well, he would go ahead and replace it to be safe. However, there is no way to be 100% confident on either of those.

By the end of the conversation, Dr Mckenzie suggested to not go through with the surgery.  He wanted to monitor her frequently, and mentioned she could even continue to do well like this for years!

We will follow-up every 3 months, starting locally, with an X-ray and echo.  During these visits, we will look to make sure the regurgitation doesn’t get worse and that her heart doesn’t get larger from fluid retention.  Her activity level will also be reviewed to make sure moderate activity isn’t taxing on her. Dr Mckenzie believes her body will give us enough warning to know if she is regressing as long as we review her status every 3 months.

Living in the 1% has not felt so good as it did on Tuesday.

Thank you for you prayers throughout the process.  We were not banking on a miracle this week, but we’re blessed with one anyway.

 

 

 

 

 

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