Monday, February 2, 2015

The date is Tuesday, Feb. 2nd, 2010

This is the day we will be "officially" told that Nicole has pulmonary hypertension and exactly what her congenital heart defects are.   This would be done with a right heart catheterization. This procedure is evasive and a catheter is inserted in the groin and then wound up to the heart and the pictures are on a screen.  This can also be done through the arm or through the neck.  Nicole has only had it done in the groin.

If I recall correctly, we left our house around 3:30 a.m. to head to Tampa which is an hour and a half to an hour and forty-five minute drive.  We also have to take in account that we are not familiar with the area.

I know that Nicole is extremely nervous and is crying.  I can't imagine what this must have been like for her.  The feelings that I had being her mom are different than what she had because it is her.

It turns out we were late because we were given the wrong time on the paperwork. One of the nurses made me feel like we were at fault but I know we weren't.  My father-in-law made the drive over (basically behind us).  I'm glad that he was there for moral support for Rick.  A lady from our homeschool group had told me that she was going to meet us at the hospital.  We were not what I would call "friends" but we were friendly.  I really didn't expect her to show up but after the pre-op and Nicole was taken she was in the waiting room.  Her and I went to the cafeteria during Nicole's procedure which I will always be grateful for.  It kept my mind occupied and I didn't worry like I would have just sitting in the waiting room.

After the procedure while Nicole was waking up and recovering the doctor came out and told us she didn't respond to any of the tests that they perform during the cath.  Her pressures were high and she had severe pulmonary hypertension.  The damage that had been done to her lungs was irreversible. He also said they couldn't close the holes in her heart  because she would die.  I'm not sure why they put her "under" during this as it is very dangerous to do so.

It was time to start treatment for her pulmonary hypertension.  The first drug was oral called Revatio which is Viagra.  She would be monitored for 24 hours taking this to keep checks on her blood pressure as this drug will lower your blood pressure.  They were also going to get Nicole started on oxygen therapy.  A respiratory therapist came in and went over how to use the tanks etc.  She also told us who would be meeting us at our house when we arrived home to get her set up with oxygen in the home.  I believe we left late on Wednesday afternoon and the respiratory therapist met us shortly after we arrived.

Since this date Nicole is on the maximum amount of therapy for her PH which is three drugs.  She has had two other heart catheterizations to check pressures and how well the medications are working.  Fortunately, these have been here at the children's hospital so we haven't had to travel.  The cardiologist who does these always makes Nicole spend the night just as a precaution.   She can't move for about four hours or so after the procedure.

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