1st heart-iversary and what’s to come

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August 7th marked the one year anniversary to Reiss’s first open heart surgery.  Reiss has come so far, but somehow it seems like only yesterday we were at St. Louis Children’s Hospital handing her off to the doctors.

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Reiss (10 months) post-op with Mama Cindy August 2013
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Reiss (21 months)

 

Cardiologist Appointment

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Checking out her sticker while waiting on the doctor

Reiss had a cardiologist appointment this week as part of her routine 3-4 visits per year. We go in waves in regards to Reiss’s level of fear at these appointments. Usually I can feed her a mix of logic and diversion to catch he attention enough to complete a test. This week, however, that tactic didn’t work for the whole duration of the visit. Reiss was able to sit through the echo without a major breakdown or many tears. She was a great “helper” for the tech taking pictures of her heart. As you can see below, I was able to snap a picture of her during this test. The EKG was a different story. As you will not see – I didn’t get a picture of this test. She screamed the instant we got in the EKG room. The room was filled with adorable puppies, kitties and cartoon characters and Reiss could only cry and hold on to me for dear life. We made it through the EKG fine, with a mediocre readings – same for the blood pressure reading.

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Echo of Reiss’s Heart

 

 Status of Reiss’s Heart

The doctor said that Reiss’s heart and its function had not changed since the last time we saw him in April – which is good. Her pulse ox reading in April, however, was around 86.  Now it is reading around 84.  Since her tests are all the same as 4 months ago, the doctor attributed this to her growing and mentioned that this was completely normal for the pulse ox reading to go down a point or two over time.  So, what happens when the pulse ox gets too low (usually under 70)? The answer:  surgery.  The doctor said that it is very rare for the pulse ox reading to be the reason a Glenn patient would go in for surgery.  As usual, it is something we just have to watch.  We will go back to see the cardiologist in December.

When is her next surgery?

We talked with Reiss’s cardiologist about what to look for in terms of the next steps towards surgery.

  1. Dr. Eghtesady from St Louis Children’s Hospital will not make a decision as to which surgery Reiss will under until closer to that time.  The options include:
    1. Go with The Fontan – which will be the second step in making Reiss’s heart a single ventricle heart.
    2. Make “the double switch” – which will be multiple procedures to reroute Reiss’s arteries to allow the heart to pump as it should. There are a couple of options with this procedure and honestly, we haven’t talked about it for over a year, so these could have changed.  If you want to read more about this option, read this blog from 2013.
  2. If we were to go with The Fontan, the minimum weight requirement for this procedure is 33 pounds.  Reiss has been around 25 pounds for most of the year, so I’m not sure if we would reach that by next Summer.  The reason for the minimum requirement is that the Fontan includes the placement of the conduit to connect the Inferior Vena Cava to the Pulmonary Artery.  If a child is smaller than 33 pounds, there is a possibility that a smaller conduit would have to be placed – meaning a larger one, in a separate surgery, would have to be placed later in life. Until Reiss starts to get around the 33 pounds range, we will not make any steps towards looking to either surgery option.

How do I feel about surgery? I hate it. I get a lump in my throat just talking about the possibility of it approaching in the near future.  We have already been through a surgery (and a couple of catheter procedures) with Reiss and I am not ready for another.  I am not ready for her to understand and not understand at the same time. I am not ready for her to hurt and cry out for mommy and daddy.  I am not ready, not ready at all.  In fact, I think I was more ready for everything prior to right now.  I guess I feel like we are so good right now. Reiss is happy and learning about the world around her.  We have a sort of routine.  Mostly – I want to keep her from knowing what surgery and recovery are and what pain is – which is impossible. Thankfully, surgery is at least a year away and maybe more.  In the mean time, we will go about our days as any other mommy and daddy in the world – loving our children and trying to teach them what we can.

Developmental milestones.

Reiss is talking more and more everyday and has developed quite a personality. I think it is safe to say that she takes after me with how silly she is.  Developmental milestones was a subject of worry starting before Reiss was born.  Children with heart complications tend to be slower with these milestones – if they reach them at all.  Going through a checklist of where Reiss should be at age 2 (yes, she is almost 2!), she is right there with the average population.

Pictures of Reiss

enjoy!

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