Reasons why. 23.54

Tiny Void, who not only blogged her way through the A Schedule but monitored as well, as spent some time cheering me on.  It turns out her chosen charity was the American Heart Association. In fact, I think somewhere in the back of my memory, I remember look her up this morning.

Anyway. She has kindly offered to let me borrow an entry. If you read this, please follow the links to sponsor the AHA through her diary.

I wish I had been braver about sharing this blog with folk I know. Perhaps that too is a lesson to learn.

My Reasons

Monday, July 16, 2007

This is a fair warning that there are a few pictures at the bottom of this entry that some people may consider disturbing.

Jay was born univentricular.  (That is, the wall that divides the ventricle into two ventricles was not there.)  When he was three years old, he had his first heart surgery a modified version of the Fontan Procedure.  The surgery was still new at the time, but without it, he was not expected live past 11 years old.  No one knew how long the effects of the surgery would hold up since it was new.

When Jay was in his twenties, he began experiencing arrythmia.  After trying to put it off as long as possible, it was decided that Jay was going to have to have a second surgery.  The arrythmia was bad and the medicine only helps so much.  In fact, we only discovered the arrythmia when Jay passed out at work and was woken up by a concerned customer who saw him fall to the floor.  His heart rate was so high that he was near stroke level.

After a few months of paper work, medical record sending, various tests and a heart cath, we were on our way to Chicago for his second heart surgery.  A new Fontan procedure was available.
 

We sat in the waiting room for seven hours on the 5th of April, 2005, waiting for Jay’s heart cath to get done.  This was nothing, of course, to sitting in the waiting room for twelve hours on the 7th, waiting for his actual heart surgery to be finished.

We were updated by nurse practitioners every hour and a half to two hours.  All the reports were great, but we couldn’t help but worry.  All around us were people who had children having various surgeries and it seemed like most of the surgeries were not going well or had some sort of complications.  It was the longest twelve hours of my life.  After his surgery, we had to wait another two hours before we were allowed to go see him.  During the surgery, his blood pressure had plummeted (just as it had during his heart cath a few days before).  Once they had it stabilized, they allowed us to his room in the ICU.  Nothing could have prepared me for what I saw.  Jay’s mom and dad had tried to prepare me for it, but it didn’t quite work.  He looked so dead.  There were tubes and IVs everywhere.  I held his hand, even though he couldn’t have known I was there.  He was still asleep and still had the medication that paralysed him preventing him from moving.  God, it hurt me so bad to see him like that.  His entire body was swollen and his color was so strange.

I had to sleep in the waiting room the first couple of nights because there was no fold out chair in the ICU room.  To be perfectly honest, I would have been too scared to sleep in the ICU room for the first few nights.  I didn’t want to be in there if something went wrong.  I have a tendency to panic.  When I went into his room the following morning, he looked at me and just smiled.  I couldn’t help it, I cried.  I’d tried so hard not to cry in front of him before his surgery.  I didn’t want him to worry, but I was so happy that he was alive and that he knew I was there.  I stood next to his bed and held his hand.  I asked him if he knew I was there and he nodded.  He even blew kisses at me.

The next few days were really hard.  He was doing well, but he wanted that breathing tube out so badly.  He was frustrated, we were frustrated.  It broke my heart to see him so uncomfortable and to know that I couldn’t do anything about it.  I never left his room for more than ten minutes at a time.  I went to the cafeteria one night, after they brought me a fold out chair to sleep in, to get myself something to eat and to bring him up something.  I got some pudding and sat down to eat it, but I couldn’t.  I started crying and just couldn’t stop.  I ended up throwing the pudding away and going back upstairs once I had calmed down.

I was so stressed out and worried that I actually became physically ill.

I stayed with him the entire time.  Jay’s mom kept trying to talk me into going back to the hotel.  "He won’t know if you’re gone."  I refused.  I couldn’t leave him there by himself.  What if he needed something?

I remember holding the phone to his ear because he wanted to talk to Cody.  He was still intubated at the time, so I told Cody to just talk to Jay, but that he wouldn’t be able to respond.  Jay decided to contribute to the conversation by going "Uhhh" from time to time.

Still, eventually the breathing tube came out.  Then, he did not need as much medication.  Finally, the tubes in his chest (the ones draining liquid from his chest cavity until his body would absorb them on its own) came out.  We were practically on our way home.

Jay was released from the hospital, but we had to return in two days to have his pacemaker settings updated and the staples taken out of his chest.

Finally, we were heading home!

I can honestly say that April 2005 was the most stressful month of my entire life.

The American Heart Association provides funds to allow research and then translates all of that research into practice guidelines that are used by medical schools all over the country.  They provide over 4.9 million dollars in funds to the hospital that Jay’s wonderful cardiologists are at.  Since 1948, the AHA has invested over 2.4 BILLION dollars in research!  I strongly believe that without the AHA, Jay’s surgeries would not have been possible and I would not had the 6 wonderful years of friendship that I have had with Jay.

If you would like to support the AHA, please sponsor me for Blogathon 2007.  You can do this by going to the Blogathon website and registering an account.  Once you have done that, go to <a href="http://www.blogathon.org/pledge.php?blogid=269&#8243; target=”_blank”>my sponsor page.

You are only making a pledge to donate on this site.  Blogathon will ask for your name and email address, but will NEVER sell your information to anyone else.  When Blogathon 2007 is over, you will receive an email with instructions for going to the AHA’s donation website (or, if you choose to sponsor someone else, their charity’s website) to make your donation directly to the AHA.  Neither Blogathon nor I will ever see your money.

What I saw when I walked into the ICU room after Jay’s surgery.

The breathing tube is out and Jay is no longer quite as drugged.

Going for a walk around the floor a few days before Jay was let out of the hospital.

Bri (Jay’s nurse practitioner), Jay’s mom, Jay, me, and Dr. Deal (Jay’s heart doctor while he was in Chicago and one of his surgeons) the day before we all went home.