Monday, February 13, 2012

Heart Update

As you may or may not have noticed we have a new header. February is clearly very near and dear to my heart for obvious reasons. 

I have several drafts in the making right now because every time I start writing I kinda make progress then I have to stop for some reason or other like to oh' I don't know sleep or tend to a child or something.
 I can say I have been sleeping better. I don't know why. There isn't really a rhyme or reason to it really except I took myself off of all and I mean all meds.  Over a month now and I am on nothing. No anti-anxiety.  No anti depressants. Nothing. I did it myself.  Weaned myself slowly and here I am.  Do I cry more? Yepper. Sure do, like a lot. But you know what. I don't feel foggy anymore. I sleep like a rockstar and I feel like I have more energy.  Do I have my moments?  Don't we all?  I am pretty sure my doctor and therapist alike would have a lot to say about me taking myself off of these meds right before a big life event like my sons impending surgery, but here's the thing. I have already done it once all on my own without the help of "drugs". I gave birth to him without them. Sat through the first 5 hour surgery without them. Sat for 2 months day in and day out without them. So I am pretty sure I've got this. If anything I feel better now than I have in a long time. If for no other reason than I am freaking sleeping people!  Now, back to my drafts, I have several in the making because I just got back from North Carolina, but that's gonna be a post in and of itself.  I also started another post letting you all know that we met with Paxton's cath surgeon and it was letting you know that his cath is scheduled for this Thursday.

His oxygen is now holding steady in the mid to upper 70's which is indicative of his need for surgery.  The heart cath will give his surgeons a better idea of his heart function and allow them to coil off any collateral's that may have formed before he goes for his open heart. The surgeon and his cardiologist are in agreeance that after a good visual of his heart that his third open heart surgery, or Fontan, will follow shortly after.
We are scared and nervous.  We just want this to be behind us and know that he is going to be ok.  I have moments where I can't breathe from fear. I am paralyzed that these are my last days with him and then I remember how incredibly strong he is and how he has beaten the odds all along.


So I got this text from my friend last week saying "thinking of you guys today" as we were en route to our pre op cath appt.   I replied "thanks girl, it's just for a heart cath which is to prepare for the big one, but you know "its just" is so much more with pax..."
Her reply: "listen to yourself... "its just a heart cath"....that's a big deal. You have been under sensitized."

And I thought about our conversation for a long time because the truth is I am not under sensitized at all. In the heart world a cath tends to be a cake walk, yet to me, anytime my son is under anesthesia is reason to feel the need to vomit.  Sometimes though I feel as though it's not ok to make a deal out of the little things and yet the little things are SO not little things especially with a single, yes single, ventricle baby. So thank you friend, you know who you are, for reminding me its ok to worry about the big, the little and the dang in between.

So in t minus 2 days we peace out to All Children's Hospital and round 3 of this insanely crazy journey begins. We are however, blessed to have amazing people behind us every step of the way.  Be it, friends, family, our neighbors or parents and students at the boys school; we are so very blessed.

Take note of the dates to remember section in the picture above. Did not know that would be in the parent newsletter.  Definitely cried when I ran across that unpacking backpacks.

I will be sure to keep you all updated as best I can on Paxton's progress as time allows.  Thank you to our readers near and far for taking time out of your busy lives to check in on our little corner of the world. To us its the whole world and if I can share anything with you from our journey its to hug your kids a little tighter, find patience where patience is low and be grateful~so very, very grateful for health.  For I have spent far to many days surrounded by children suffering from illness.

A little sneak peek on my NC down??? Alrighty then.

We spent a whole hell of a lotta time here. Stay tuned to find out why! ; )

Keep those prayers a comin' peeps!

Love and hugs


cici said...

Prayers are a comin'staring now.
Pax will do amazing and feel so much better after the surgery. Guaranteed!
So happy you are sleeping and tossing the Meds.
Just remember, this will soon be just a memory.
[[[[[[HUGS}}}}}}}} and
Happy Valentines Day

Anonymous said...

Praying for all of you.

Anonymous said...

I've been reading your blog for sometime now. Will be praying for Pax on Thursday. What he/your family is going through is a good reminder to hug our little loves a little closer.
Thank you for sharing.

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