Sunday, April 1, 2012

There's no place like home...

Hayyyy! What's up my peeps!  I know, I know I have left you hanging. RUDE!  

We are home again.  We were admitted for exactly 24 hours and discharged the very next afternoon. Paxton is walking, in fact he walked the tunnel from clinic to hospital just minutes after his doctor decided to admit him~ naturally~murphys law.  I am unsure about the "fluid returning to his lungs" diagnosis at this point because they did absolutely nothing to him cardiac wise in the 24 hours we were there and "miraculously" it was gone by the next day to be discharged.  While beyond grateful we are home, I am admittedly concerned that this is twice now we have been told he needs a cath only to have them retract with no explanation.  We will be getting a second opinion on Wednesday and I am incredibly curious to see what this doctor has to say.  I don't want Pax to go through anything more, but I also don't want an emergent event happening because this has not been dealt with correctly. We know he has collaterals. I was told Thursday they needed to be coiled off, by Friday we were home with nothing tended to and no explanation.  So a second opinion it is. If only for my own peace of mind because there can never be any being to careful with my boy. 

my sweet boy would not rest in that hospital unless mommy was right by his side...thank god for being short ; )


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As you may or may not have read in my prior post, I kinda lost my sh*% that day!  We were so happy to be home only to have it swept out from under us. I expected week (s) back in that hospital, missing spring break with my boys and knowing they would be hurting emotionally in my absence again.







































It was so emotionally painful in that moment. I knew what I was missing. I knew I would not be there for yet another school party and I felt I was letting them down and nothing anyone said was making it better.  I know that my husband found my oldest crying over my picture, telling me "to please hurry mommy, please hurry home" in sobs.  I know it hurts them when I am gone and not knowing when I would be back was complete and utter torture for me.  I never want them to live in Paxtons shadow, but unfortunately his health is so fragile that whenever anything goes wrong everything else falls to the wayside.  It's a hard place to be as a Mother.  It's hard to have your heart torn three different ways twenty four hours a day and have zero control of the situation. So I cried. No scratch that, I sobbed for anyone and everyone around me to see.  Randoms would come up to me to see if I was ok and I would wave them off. My sweet, sweet sister took Paxton for a walk so I could let it all out.  I was livid at the unfairness of it all.  There was no glass half full, there was no positivity, there was so rationalizing with me about my boys. Are they ok? Yes. Would they be ok if we were still there? Yes. But, that still wouldn't make it fair and I hated, yes hated, that for them. All that I wanted in the beginning of this Fontan journey was to stay as long as we needed for Pax to be 100%, but please don't send us home if he wasn't ready only to have to come back. For Paxtons sake and for my other boys sake. I would rather it be one long absence than screwing with their minds going back and forth. I am always needing to be in two places at one time and this time especially,  I couldn't be. I had a little boy home with the flu who had been puking in my arms the day prior, you know the one of two they got with me, and I had to leave him. It killed me.  I think I cried for 24 hours straight.  Logically I knew all the facts, that they would be ok, that this too would pass, to stay positive. But I had none of that and blah blah blah was all that I heard in those hours. I was blunt and I was short and that's ok, because I can't remember the last time I was just f ing fed up with it. Sad and scared, that's everyday, but fed the frig up.... it had been awhile.  There was no making lemonade with my lemons at that point.  I was/am sleep deprived on such a deep level, had spent the night in the ER the night before and could see no light at the end of the tunnel.  I "had nothing" that day.  If you know me well, you know I can't stay sad for long. I cry good, long, hard cries and come nightfall I am doing impressions of Tow Mater to embarrass my sister in front of the nurses.  I would laugh big belly laughs by the light of Paxtons infusion pump at my sisters disgrace over me, my own way of self medicating I suppose. I hit rock bottom hard, but somehow, someway when I cannot see through sobs, when I think I will never be ok again, I always am.  For that gift, I am so.very. grateful. 




































such pure, uninhibited pride



It's a winding road, HLHS.  It's a single ventricle child that just had open heart surgery. I get that.  Time is the best medicine in this situation.  Even 3 days has made an enormous improvement in him.  His scars and there are a lot, look amazing.  Already only faintly pink instead of that harsh red.  His strength has improved tremendously and with his strength comes mine as well.  


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Today, I have something. Today Paxton is running around with his brothers.  Today is Sunday Funday, still in our jammies day. We are all together and tomorrow starts spring break. I don't need to remind you tht we live in South Florida and it is gorgeous outside.  The clock has officially started on going to bed late, beaching it, getting drunk on ocean air, making up for lost time break.


















And I do... even when I am so blinded by heartache and tears...



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There's NO place like home...






































Love and hugs~
j

for the second time now....a thank you and something on my mind post coming up...once I get caught up round here.

3 comments:

Me said...

yeah mom! and yeah paxton!
Paige says: "Get better soon. I want to see you at school!". :)

Anonymous said...

Glad you get to be home with all your babies. Have an awesome spring break.

cici said...

Home is definitely where "the heart" is.

I am so happy this is behind you and now you can concentrate on all your
handsome boys and breathe a huge sigh of relief!!!!!!!!!!!!!!!!!!!
~Your beauty shines thru my computer~

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