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.


Saturday, November 12, 2011

Bring on the GLEN!!!

It was time.  We packed up everything and headed back to Philly.  The drive down felt like it took forever.  The first day we just went to the clinic and he had the normal tests.  EKG, Echo, Xray...we signed consent for the surgery and the MRI.  There was no room at RMH so we stayed at the Holiday Inn again.  Xavier knew that he was not at home so he was fussy.  Also he was NPO after 11 so he was not happy when he woke up and I could not feed him.  We had to be back at CHOP bright and early on the 12th.  His MRI was at 6:30 am.  First, they were going to take a look at his vocal cord, then a heart and brain MRI.  We waited in the recovery section for them to come and get him.  I kissed him goodbye and off they went.  We got some coffee and waited for about two hours.  Soon they came out to get us and we went back to recovery to be with him.  He was so pale.  He had a hard time waking up and he was crying out.  I held him for a long time.  Finally I got him to eat something and they took us to a room in the CCU.

Once he was out of his fog, he was back to his normal self.  We received the great news that the clot was gone and left no sign that it was even there.  Score one for X.  At one point a doctor came in to talk to us about his blood work.  They were concerned about an elevated level in his blood that can mean heart failure in adults.  They are still not 100% sure what it means for kids, but there was talk of holding off on the Glen and doing a cath of his heart instead.  A team met including Dr. Gaynor and Dr. Wernovsky.  A repeat EKG was done and his function looked fine.  The hypothesis of the team was that his heart was being overloaded with blood due to the shunt and he was just ready to have the stage two.  Once some of the blood was flowing directly into the lungs it would take the load off his heart.  We were going on as planned and we never heard another thing about poor heart function again.  

We ended up getting a room at RMH in Philly, but Nate and I stayed in the hospital with X the night before the surgery.  My mother was there along with Nate's parents.  We decided to show a united front and make T-shirts to show our support for X.  All of our family and friends also wore blue and sent word of encouragement.  He was not even taken for anesthesia till about 12 noon.  It was going to be a LONG DAY!!

The only thing that kept me going was getting these pictures.  Some to my phone, some to facebook, some to email.  It gave me the extra boost I needed to get through this one.  The Glen was much worse then the first.  I knew X now.  He had a personality.  We spent every hour, of every day together.  Now I just had to sit there and wait.  It was the same game as before.  The nurse called every 45 minutes with updates.  This time I found myself leaving the room when the phone would ring.  All the updates were good.  Soon we were bedside again.  The best thing this time was that he came back without the breathing tube.  But the hardest thing was that his chest was open again..and he was in PAIN and in a way it felt like starting all over again. 

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