Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Saturday, November 12, 2011

The Summer of Xavier....

We were home on June 21st.  My mother stayed with us for two weeks to help us with X and to help around the house.  We visited our cardiologist or primary care doctor once a week.  We had a home nurse visit one a week.  Alyson from CHOP would call once a week.  I wrote down everything.  Wet diapers, dirty diapers, volume of feeds, time of feeds, weight, baths, scar massages, O2 stats, heart rate, sleeping patterns, changes in his voice (due to a paralyzed vocal cord)...I had a record of all of it.  X was gaining weight and doing pretty well.  Everyone was happy.  We had a few scares, but they were false alarms.  June and July flew by.
 On August 8th we headed back to CHOP for our first Neuro-Cardiac visit.  Dr. Wernovsky was very happy with X.  Speech was happy with him to and took the NG tube out.   We had to thicken his feeds, but he was free to eat as much as he wanted.  We were happy.  Here is his first picture without the tube--->
Once he tube was out Xavier gained weight like a champ.  He was in great shape for the Glen.  A few days after our visit, the cardiac center called with dates for the Glen. Pre-surgery  testing on October 11th, MRI on October 12th and Glen on October 13th.  I was ready to get out of this fragile inter-stage, but the thought of being back in the hospital made me sick.  I was going to have to somehow find that fight again.  I felt worn down and unsure if I could do it again.  I decided to just try and enjoy the rest of our summer.  I was looking forward to spending Labor Day in PA with my family, something that we do every year.  Xavier had other plans.  Because of the East Coast Hurricane, Nate and I decided to pack up and head to my parent's house early.  His Jersey Shore gigs were cancelled for the weekend and we just couldn't risk having X in our apartment without electricity.  Xavier was so good on the drive.  We had a great time visiting with my nephews, brother and grandmother.  Nate went home for on Monday afternoon and Xavier and I decided to stay the week and go home on Labor Day.  That night Xavier was fussier then normal.  He just didn't look like himself.  He started throwing up and I just into super mommy mode.  I was on the phone with CHOP and the decision was made that he should go to the ER.  There was one closer to us, but since his stats were good and he did not have a fever, I made the decision to drive to CHOP.  He was admitted and ended up with another transfusion.  We stayed for about 5 days.  We never really did get to the bottom of the vomiting, but that was his only admission between surgeries.









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