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This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Thursday, May 19, 2011

Cardio visit

     Well, as the old adage goes, "things happen in threes."  So right now I am waiting on the 3rd bomb to drop.  In one week (well 8 days), I've had a miscarriage & now I find out that Troy has to have another heart surgery, immediately.  I'm just walking on egg shells, but hoping the third devastating thing comes & goes.  At least then I'll know it's not Troy's life in the balance, that his health won't be the 3rd bad thing.  My heart just aches so bad right now.   :'(
     He had his echo cardiogram & usually the doctor comes in just a few minutes later to tell us the results.  But not this time.  We ended up getting frustrated & opening the door of his room so maybe they'd hurry things along.  After all, Mack needed to be in the bed, not waiting on a slow poke doctor.  A few minutes later, I heard his cardiologist on the phone talking to someone.  He was talking about Troy.  I heard him ask if they wanted to do another valvuloplasty or go ahead & replace the tricuspid valve.  But Troy's cardiothoracic surgeon will be in surgery all day & that's his call to make. Now we wait to see what the cardiothoracic surgeon suggests.  Mack & I have different opinions on this.  I say go ahead & replace that valve.  I can't do this every 6 months.  The goal is to let him grow...he's only grew 1/2" & 2 lbs in 6 months, so that's not working.  Mack says he'd rather go in every 6 months & do the valvuloplasty than have the valve replaced right now.  Once he has the valve replaced he has to have it replaced again every 2 years until he stops growing & every 10 years after that.  I feel like we're just avoiding the obvious, he's going to need the valve replaced, go ahead & do it so he'll get better.  I hate that he's suffering.  My liver is swollen due to my illness & it's not comfortable to say the least.  He'd grow if he didn't have to take Lasix 3 times a day!  But, we did get some answers from him while we were there.  Troy will be able to go to school in January & he can start attending the Joy ministry at church.  He will have to take antibiotics before any type of procedure...we were told conflicting answers earlier.  And about his nutrition, this is the exact answer from his cardiologist (I came very close to bringing my camera & video taping his response for proof), "You're doing a great job.  You think about it.  He has a heart condition, #1.  He has Down syndrome, #2.  He's 2, #3.  You add all of that up, that's 3 strikes working against him.  The heart condition alone will cause feeding issues.  But for a child his age, with Down syndrome to be eating food & not being tube fed is awesome.  Look at the growth chart.  See where it goes straight up, then levels off?  This is where he is (pointing to the middle of the leveling off part of the chart).  He's 2, so he's more picky about what he eats & he's more active.  You're feeding him the right things, doing the right things.  If I were you, I'd give him more Pediasure, if he'll take it.  You can't give him too much of that stuff.  But I think you're a great mother & you're doing the right things.  There's nothing else you can do & he's not underweight...he's growing."  Mack told him that he loves biscuits so we give him one on occasion & he said that was okay, just to feed him what he wants as long as he's getting proper nutrition too.  I told him what he eats during the day & he said that he's getting the nutrition he needs.  :)  But back to his heart.  The pressure in his tricuspid valve should be 0.  The lower the number, the better.  When he went into complete heart failure in December, it was at 16.  In February, it was at 8.  Today it was at 11.  He wants to make sure it doesn't get to that point again.  He said that Troy is too small to receive a mechanical valve, so he'll receive a tissue valve.  Right now, we're just waiting on the call from the surgeon to see how he's going to proceed.  Please pray for my little boy.  This is a very serious situation that requires a clear, correct decision from the surgeon.  Surgery is inevitable, just which one is the right one for his little heart?  So please pray for the surgeon & the cardiac team that will be making the choices for Troy, pray that they make the right decision.  Thanks to everyone who has prayed!
     I couldn't wait another second so I called the cardiologist this morning.  To make a long story short, Troy's case will be reviewed on Monday by the cardiac team at conference.  They prepared the packet for the valvuloplasty, not the valve replacement....BUT they can decide against the valvuloplasty & schedule the replacement surgery.  I should hear from the cardiologist sometime on Tuesday about the type of surgery & the date.  We don't get to pick a date, they will schedule the first available time.
     Oh & one of my dearest, closest friends made me aware of the third bad thing....my email was hacked.  That should count, right?!  Thanks Lori Lee...I love you!

3 comments:

  1. So sorry to hear about your miscarriage and poor little Troy! We'll be sending prayers and good thoughts to you and your family that the doctors make the best possible decision for your little guy. Hugs to you!

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  2. So sorry that Troy has to go through this. I'll pray for him and that the surgeons would make the best possible decisions.

    God bless!!

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  3. I just wanted to let you know that you all are in my prayers. I am sorry to hear about your miscarriage. No one truly understands what it does to a woman when they have a miscarriage unless they have had one. I do feel your pain and pray that God will heal your body and give you strength that you need. Bless Troy's heart literally. He is such a handsome young man. God give this family peace in the decision that is made about his heart. Lord help the doctors to make the right call and get his body fixed so he can be a light for you. Thank you God for allowing Troy to be a happy and as health little boy he is. Lord just be with Troy's parents as it is hard to see their precious son in misery. Be with Troy's brother as well because he is in need of some understanding of all that is going on in his family. Lord just keep this family close and hold them up when they can't go on. Let them know that they can call on you at all times. Thank you for all of my blessings and I pray for everyone to have more blessings to come. Amen!!

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