Saturday, March 24, 2012

Learning To Dance...

Tonight I cried.  Tonight was one of these nights.  I am sad and I want home.  I want my boy to not be poked anymore. I want him to crawl into his own bed and smell the softness and comfort of home. I want to do the same in my bed.  Daddy came to visit today. He surprised us and it was wonderful because we were sad this morning.  The H word was mentioned about this weekend and no sooner was it brought up that it is snatched out from beneath us.  Paxton's CRP test (a blood protein test to look for infection) not only came back positive but doubled from 7.5 to 19.5 in a matter of 12 hours.  Not good. His body is fighting something somewhere, it's just a matter of finding out what and where.  Cardiologists came in today and went back and forth about why the drastic spike and what it could be from. They talked more testing and more sedation and my heart broke.  I want him home, where he belongs.  I want that normal I talked about, that I have been dreaming about.  It is so hard to watch your husband leave again to go home to everything you love while you stand in a sterile lobby tears streaming your face.

I am trying to dance.  Trying so very hard, but we are both tired and we are both missing home so deeply and I want to be all happy and funny and tell you how Paxton puked all over me this morning and I panicked and hit the staff alert button because I couldn't find the remote with the nurse button on it,  so my next best thought was to alert a staff member. Easy enough right. No, that is basically a code blue, but without the paddles kinda situation. So the door flies open, I am standing there puke covered, with 12 people staring and I say "uh...I'm guessing I wasn't supposed to hit that button." The humorous side of me told them I was just making sure everyone was awake! . The unhumorous side of me had just watched my boy get woken up at 5 a.m.  to be poked 4 times by a legit idiot, who made him cry so hard he puked all over.  (also here's a thought: they need to change the wording from staff alert to emergency staff alert .  I mean staff alert seems so not life or death)
So I went downstairs and showered. I came back up, crawled into bed with my boy and we didn't move until 11 am.  Clearly we had some catching up to do or maybe we both thought what was the point. Why not just snuggle all morning because right now we're living in a hospital and there's nothing worth getting up for so lets just stay right where we are.

Tomorrow I hope and I pray we get better news on his numbers.  I hope tomorrow while we endure the storm that there will be some dancing too.  We hope for a lot right now and we continue to learn how to dance through the storm not against it.




And like my girlfriend said today after reading this on my FB, "at least you've got moves". You all just wait to see my moves when we get the all clear.  They may go a little something like this....






































Running man style right out the front doors of this B!

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And lastly, because what's a post worth without a picture of the blue eyed babe that has stolen hearts all across the CV unit.





































That look says I am in charge,  that crossed leg says I am a P.I.M.P.  and that drink says the apple doesn't fall far.

Will update tomorrow when I know more.  Prayers appreciated, heart hugs going out to all our peeps!

Love and hugs~
j

3 comments:

Amy Bennett said...

Oh dang, I am SO sorry. This is breaking my heart. Poor sweet Pax. I can SO relate to being stuck in a hospital with the rest of your family, your children needing you, somewhere else. it's horrible and no mom should have to go through it. Sending you all my love and prayers tonight.

Heart Hugs,
Amy & Bodie

Kelly said...

I've been reading for a while and just wanted you to know that I have been thinking about your amazing heart warrior! I hope that his numbers head in the other direction and that you guys are able to go home soon.
Kelly
(I have a 5 year old boy with Tetralogy of fallot, pulmonary atresia, and pulmonary hypertension. I don't keep a blog, but a carepage instead: JacksHeartUpdate)

The mom of 4 monkeys! said...

And the shirt reminds us of the super hero Pax is! Love that picture! Getting ready to go to church and do some more serious praying for your super hero!

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