Saturday, May 26, 2012

god's work

This is another one of those posts I almost need to let swirl around in my mind a little longer, too!  But I know so many of you are waiting for the details, I know I can't wait any longer.  We got home this afternoon, crashed for about two hours (Andrew and daddy in Andrew's bed, mommy and Kerigan in our bed!), did loads of laundry, caught up on dishes and gave the kids a bath.  Now everything is processed, the kids are tucked in clean sheets, and I am able to sit down and think.

Let it all sink in.

Last time I updated after his cath, I had a hard time knowing what to say because the news wasn't good.  It was very hard to write.  This is equally as difficult to write, but this time because I am having trouble coming up with words to explain how incredibly grateful I am.  Words that will do justice to this miracle we all just witnessed.  Words that will clearly give glory to God, because He is the reason for all of it.
Sweet Kerigan sporting Andrew's old heart romper... Supporting her brother!
Thank goodness Ga Ga showed up with the "Ice pack!" (aka iPad)

We are just overwhelmed, to say the least.  This is one of the first times (I think it is the first time!) that a cath has gone off without a hitch.  Not only was it perfectly orchestrated, but it also changed our son's life.  That might sound a little drastic to you.  But honestly, a true miracle happened.  And if the work that was done continues to improve the pressure.... we are talking about Andrew living a normal life.  And that is huge.
Playing together while waiting to go back

Once I had a chance to sit down and relax this afternoon, I went back to Andrew's carepage and reread from the beginning of this journey.  Andrew has been through so much since then.  I felt a short summary was necessary to insert here.  I think it makes the end result of this update even more miraculous.  So bear with me...
Playing with Kerigan while waiting for cath...
Almost ready for the cath lab... this is where we go right before they take him in

Andrew had his full repair of Tetralogy of Fallot when he was 7 months old.  At that time, we were hopeful (I like to call it clueless now!) that it would be his last surgery.  His last "heart" issue that was resolved and we would be finished with this journey.  Well, obviously, that wasn't the case.  2 months later is when we learned that his heart had dangerously high pressure, caused by the repair surgery which opened up his main pulmonary artery and increased the blood flow in his heart.  This increased blood flow was supposed to make the branch PA's grow.  

It didn't.

The result was, very high pressure, and a trip to the cath lab.  I'll never forget Dr. Divekar coming out of the lab, sweating, after about 5 hours of working on our son.  He was concerned.  Andrew's pressure in the right ventricle was higher than the pressure in his body.  We were terrified. He wanted to place a stent in his PA.  We were crushed, knowing that eventually he would outgrow that stent, and need another open heart surgery.

Welcome to the heart journey.  Reality check.  That was when we learned this is never going to be "over."

So the stent was placed at 9 months old.  Since then, he has had countless caths.  To add more stents, to widen them.  We have run into trouble with the placement of one of them, making it difficult to balloon.  At age 4, Andrew had surgery because he had outgrown the stents.  A few months later (last September), another stent had to be placed because the PA's did not stay open after that surgery and the pressure was creeping back up.

This has been a roller coaster ride, to say the least.  We had been told that Andrew could live with high pressure for a while, but over time it would damage his heart.  He would eventually start to lose energy and not be able to keep up with his peers (like he can now).  He would basically deteriorate over time if this pressure couldn't get under control.

And in September, it wasn't looking like we had much hope for improvement.

Insert GOD here.

Because only He could have orchestrated what happened yesterday.

We went into this with fairly low expectations.  We are used to being prepared for the worst.  I was fully expecting more stents, and for them not to bring the pressure down exceptionally low.  To give you an idea... his pressure began in the 90's when this all started.  A "normal" person is in the 20's.  Basically all of his life he's been sitting in the high 50's and 60's (since the intervention of the stents) a good majority of the time.  We were running out of hope.  We were afraid the statement "There's nothing more we can do" was coming soon.

Until today.

Getting his vitals when we arrived...

This time when the doctor pulled us into that room across from the big steel doors where my baby was lying on a cold operating table... he was smiling.  He told us he's as happy as he's ever been before.  He started by explaining that there is new research out of Boston that encourages the use of high pressure ballooning in cases like Andrew's.  That what he was doing before was not enough, and it would never improve if he didn't get more risky (And can I add that I'm glad he didn't tell us this before he started!  Ha!).

He showed us 3 drastically different photographs on the computer, as we watched blood pumping through our son's body and his heart beating on the screen.  The first picture was of the left PA stent and how narrow the area just beyond the stent was when he began the procedure.  The stent was nice and wide, but the area beyond it was tiny.  Not growing.  Then it got a little bigger, then a little smaller again.  Basically, it was uneven, and narrow in areas that was restricting his blood flow.
In the recovery room with daddy right after the cath...

The last picture brought us to our knees.  He was able to balloon that area and completely open the left PA.  Almost equal to the width of the stent, which was about 8mm.  Even all the way across.  With a balloon.  Not another stent.  This meant that nothing artificial was added, yet we still had amazing success.  The area beyond the stent started at 4mm, and ballooned to 7.8, almost equal to that of the stent.  His pressure came way down, too.  But I won't tell you the number... not quite yet.  Because overnight the number got even lower.  And it's pretty exciting.

Andrew did really well the whole time.  He was extra sleepy because they are starting a new medicine to give at the end of a procedure to keep the kids calm, which is good, but it always makes me a little nervous when he doesn't wake up right away.
Then he got some visitors... and they were worth waking up for!  His cousins, Evi and Jayden, are so special to him.  He loves all of his cousins so much, and he wants to be with them all, all the time.  Most of them live far away, but we are blessed enough to live just across town from these two.  They are seriously pretty much his favorite little people.  
It really meant a lot to me that Aunt Rachel brought them to visit just to cheer Andrew up.  That's a long drive for something so simple.  But it wasn't simple.  It meant the world to Andrew and to me.  He was so bored and upset because he couldn't play, so they sat up in bed with him, watched a movie, and did puzzles on his tray with him.  They also brought him the best present ever- a new toy from Madagascar 3.  Anyone who knows Andrew knows he is obsessed with happy meal toys.  He has been waiting for these for over a month.  We didn't think they were coming out yet, but they surprised him!  Evi knows how much Andrew loves them, so she gave hers to him.  I thought that was the sweetest thing ever.  When they were leaving, after they hugged and kissed each other, Andrew hollered "Evi!?"  She stopped and turned around... he said "Thank you for my Madagascar happy meal toy." That was a pretty special moment.  You guys made his day!  Thanks so much for coming, Rachel!
Things were a little different this time with this little girl in tow!  She's a mover, and she wants down all the time!  But I wasn't about to let her crawl on that germy hospital floor!  She seemed concerned about her Bubba.   She was with us the whole time- watched him get his blood drawn, watched him go into the cath lab... she is learning what it's like to be a sibling of a heart child.  And she handled it like a champ.
Last night my little man was starved!  Around 7:00 as we were all eating supper, he blurts out "I'm hungry!"  Ha!  Usually I don't think to feed him that soon after a cath, because he has gotten an upset tummy before.  I was a little nervous, but he just kept shoveling it in!
He seriously ate almost all of this!  Ha!
He kept it down just fine, and wanted more in the morning!  He asked for pancakes, eggs and bacon.  He ate almost all of it (not taking his eyes off his movie!)
After breakfast we rode down the hall in the special hospital car for his echo.  And this is the fun part...
This is the amazing Dr. Divekar.  We are so grateful to him.  He has done so much for our son, and we could never thank him enough.  I am so grateful that he took the time to do the research and learn new ways to treat Andrew's condition.  Because he wasn't willing to give up, either.  He didn't want to tell us there was nothing more he could do.  And that is another reason we love this man, and this hospital.
After his echo we were literally skipping down the hall back to our room... Well, and we were racing.  Kerigan and Papa vs. Mommy and Andrew.  Wanna know why we were skipping?  Remember when I told you that his pressure used to be 90?  That's it's been in the 60's for most of his life?  And that 20 is "normal?"

He came out of the echo today with a pressure of 38!!!!!!!

And that is not a typo!  I said 38.  And the hope is that number will even improve more over time, with his newly opened left PA.  If nothing else, we'll still take "stable," because 38 is awesome.  Sure, it's not 20.  But compared to where he was before, and where we thought we were headed?  It's nothing short of a miracle.

I don't even know how to express my gratitude to these doctors, and most of all, to God.  Just as we've always known, Andrew is meant to be here.  He is going to live a long and happy life.  And a healthy one.  What we've been praying for for so long has finally happened.  The pressure has come down.  Considerably.

God intervened.
That's the only explanation.
Thank you for all of your support and prayers.  May you all witness this miracle with us, and I pray that through Andrew, you can say that you have seen the work of God, and the power of prayer.

I will give you a new heart and put a new spirit in you...
Ezekiel 36:26

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