Saturday, October 1, 2011

the details

*Note:  If you are here from Kelly's Korner, this update is the big story, but these are a couple of follow up updates... as you will see, it's been and continues to be quite a roller coaster!

God's Work
Where are we now?

I am sorry it has taken so long to update.  I know everyone is waiting to hear the details, and honestly last night was the first chance I got to just sit down once the house was quiet, and think.  We did make it home on Friday afternoon after a long couple of days and lots of new information.  To be honest, I wasn't ready to type out more details much earlier than this, because I needed more time to process, and piece together the bits and pieces of information we got, including the things I may have blocked out because, let's face it...  I didn't want to hear it.
So, I am still not really sure where to go with this, but I know I have to start somewhere, so unlike my high school writing classes, I didn't make an "outline" ahead of time, even though I think I should have, because it might have helped me organize my own thoughts a little better.  I'll intersperse pictures from the cath so it's not so long and boring to read!  Ha!

I am going to start with the good news (the part I choose to focus on).  Obviously, the main thing was that Andrew got through the procedure like a champ, just like he always does.  Dr. Divekar was able to place a stent (even though that wasn't what we wanted, at least he was able to do it, and placed it right where it should be.)  Andrew's pressures started out about 60 when we came in, and came down to 40 when we left (and don't ask me what those numbers mean, because I honestly have no idea).  All I know is that lower is the goal, so there has been some improvement already. 
Now I'll jump to the part where Dr. Divekar came out when he was finished and took us back to the small room next to the cath lab to show us pictures on the computer.  My baby was still beyond those giant, steel double doors, and I have to admit that I only heard parts of what he said here... mainly because #1, I couldn't take my eyes off that door waiting for my baby to come out, and #2, I could tell that I wasn't going to like what he had to say.

He showed us the right side first- the PA's, lungs, etc.  From what I understand, he is happy with the way things look and saw no need to do any interventions on this side (another positive).  However, the left side was significantly different.  Shocking to say the least.  The branch pulmonary arteries (coming off the left PA) were as thin as a strand of hair at the base, then they got larger (but not big by any means) the further they went out to the lungs.  This was the first surprising thing that we saw, because we always thought it started out bigger, and got more narrow towards the lungs.  Not the case.
He couldn't place a stent further down the left PA because it would have blocked the potential growth of these hair-like arteries.  And he can't stent them because they just aren't big enough, and it could potentially cause more damage. All he can do is keep expanding the stent he placed to increase the blood flow through the arteries to give them a chance to grow.  Andrew will continue to frequent the cath lab so this can be monitiored.  If things don't improve over time, he will have to get more risky, involving further stents and ballooning the hair-like arteries.  So basically, these small arteries are building up the pressure on his right ventricle because the blood decides that there is nowhere to go so the right side is compensating for the left.  And here's the part where I'm still a little foggy...

Apparently, Andrew's body doesn't compensate the way a "normal" one should.  Since his PA's are choosing not to grow, even after his surgeries and interventions that have been done thus far, doctors are thinking there is some underlying genetic reason for all of this.  Here's the part where he also brings up the hearing loss, coupled with his complex heart defect.  Evidently, this is a sign that points to a genetic issue that they all of a sudden want to try to get to the bottom of.  At this point I become annoyed because I am not sure why this hasn't been brought up before.  We saw genetics when Andrew was a baby coming out of the NICU, but it was always chalked up to an isolated heart defect, an isolated hearing loss, and just an all around "fluke." (We like to think that my dad is leaving marks on my children to remind us that he is with us... as he died of heart problems, and he also had a hearing loss...and Kerigan's heart shaped birth mark is no coincedence either. Come on, dad!)  So I ask what difference it makes if there is a genetic issue... at this point I'm thinking, who cares?  What is it going to change?  What's done is done.  Apparently, they get concerned because if there is something they are missing, there could be more problems in the future and they need to know how to treat him.  For example, many kids with hearing loss also have kidney issues, so they wanted to do a kidney ultrasound and multiple spinal x-rays (again, why this was not done a long time ago... I am still unclear.)  

Quite frankly, I do not think this is something genetic.  And if it is, I just don't believe there are going to be more problems in other areas for Andrew.  I truly believe that God and my dad worked together to send this special little boy to us.  Heart defect and hearing loss included in the package deal.  And it's as simple as that.
The other thing that was brought up sort of took my breath away, but at the same time was not a surprise.  Putting Andrew on oxygen.  I know.  Deep breath.  Just at night and "quiet" times throughout the day, but still.  This therapy has sometimes been linked to helping with growth of arteries, although it is certainly not guaranteed to work.  I say, if there is any chance that this could help him, we intend to try it.  Somehow though, the thought of hooking my baby up to oxygen at night just seems a little scary and daunting.  Especially for an active little boy who behaves no differently than his healthy peers.  To me, it will just be a reminder that he is not a "normal" little boy even though he appears to be.  Beyond the surface, there is so much more going on inside his little body.  I just have to keep reminding myself that it is not because he needs it to survive (although long term he does need this to work) because if the PA's don't grow...

I don't want to go there.
(But I'll tell you briefly because people ask and want to know... long term, his heart can't go on like this with the pressure this high.  Sure, he's fine right now.  He can live like this right now.  But I like to think that my son will outlive me... and that's why his PA's need to grow.)

The doctors have told us there is no medication that can help this problem.  Nothing that can help make the arteries grow.  Why do I feel like with today's modern medicine there should be some magical drug that would just fix this so we could all go about our lives and not have this weighing us down  Because I do think about it.  At least once a day.
I'm not gonna lie.  I'm worried.  I'm worried that my precious son has a medical condition in which no surgery, no medicine, nothing but the work of God can heal him.  Sure, the doctors can do what they can.  But let's face it.  There's only so much they can do.  And I sorta feel like we've already been there-done that several times before this.  When do our chances run out?  When do we go in and they tell us... this is it.  There's nothing else we can do.  All I can do is pray that doesn't happen for a long, long time.  And in the meantime?  We intend to live every single day to the fullest.  To enjoy the little things.  Treasure the times we have together, because we know that each day is a gift.  One that we are so blessed to receive.  The only one I ever care to receive again.  My perspective has changed.  Things just aren't important anymore.
I hate this life for Andrew.  As he gets older this gets harder and harder.  He is becoming wise to the fact that there is something "different" about him.  His behavior this time made me realize that he now understands so much more than I give him credit for.  He was sad.  Just plain sad.
He used to cry and scream and fight the mask, yank his IV and tubes out, put up a real fuss.  But this time?  He just laid there and stared up at us with his big, beautiful eyes.  And they were sad eyes.  And every once in a while his lip would quiver, and a silent tear would fall.  But he never lost it.  His bravery amazes me.  I think he knows and has accepted that this is his life, and he is sick.  I think he's worried too.  He looked up at us several times and said "I wanna be better."  So on top of everything else, I now need to come up with a repertoire of responses in my head to tell him when he needs to hear it.  This "your-heart-is-special" thing just isn't going to cut it much longer.  He wants to know more.  He needs to know more.  He understands that there is more.
And since we learned that this most definitely wasn't his last cath, or even his "close" to last one... he's going to learn pretty quickly that this is all part of his journey.  I guess I am just grieving the fact that I had HOPE that after today, we would learn that the stent would fix everything.  That we could suddenly be told that he didn't need another cardiology check up for another year.  Heck, we'd even take 6 months between check ups.  His whole life we've never gone more than 3 months without seeing cardiology.

And it looks like that's not going to change anytime soon.

Please don't think that I am complaining.  Because I know it could always be worse.  I have seen worse. I am not oblivious to the world around me.  We have been very blessed to have Andrew be as healthy as he has been for so long.  Dr. Divekar wasn't pessimistic about this (well, the first day I thought he was, but after talking to him again, I was more reassured).  He said if Andrew was a lot older he would not have much hope, but since he is still so young, he believes there is a chance things can still improve for him.  I just think that I am allowed to have moments where I can still think that this sucks.  Everyone is always telling me that I am so strong.  Well, here's my moment.  That isn't always the case.

Whew.  I think I got through mostly everything.  And if not, I'm too emotionally exhausted to write anything else.  Thank you to those of you who actually read the whole story, so I don't have to explain it a billion times.  It is so much easier to write it down and have our family and friends just read it so they know what is going on.  They know our hearts.  Then when we talk, we can actually go beyond the basics.  I love that.  So thank you for sticking with me.  In my next update I'll write about the rest of our trip and the good times we had, because we did have some fun.  And to make up for everything else, we like to show our Andrew a good time!  And despite everything he's been through and has yet to go through, this kid knows how to party!

Thank you for covering us in prayer.  Please continue to keep Andrew in your prayers every single day. He needs a miracle.  And we know it's possible.

Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
Matthew 19:26

 Click here to read about our heart story from the beginning.

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