Monday, November 29, 2010

Stream Of Hospital Consiousness

So I sit here in the wee hours pretending that I did not just arrive back at the hospital with Paxton again after only being home for two days. This can't be happening. How did this day go from running errands to mad dashing it out the door 2 hours north again. I say good bye to another night of sleep again, because lord knows the vinyl couch, my mind spinning and the noises of a hospital just don't make for good shut eye.  My whole body says rest. My head hurts from crying so much today.  My mind is numb.  This is one of those posts where I tell you to move along if you want rainbows and sunshine because tonight you won't find it. I am sad and scared and frustrated. I want answers and I want to be home. I want my older two boys to not cry hysterically for mama because she was just gone for 8 days and now I have up and disappeared on them again dammit. It shatters my heart to do that to them because I know they can only grasp so much of that.

Today I melted. Melted like I haven't melted in a looong time.  I bent over the kitchen counter, phone in hand with cardiology sobbing as she told me to bring him in. "Don't even go to the er, he will already be admitted upon arrival."  And so it goes. The packing, the driving, the wondering, the tests, the questions, the hospital life.
Wouldn't change it for anything and I mean that because it means I have Paxton, but some days it catches up with you. Especially when you get teased with two days home only to turn around and head right back.
So I cried. A lot. So much I couldn't breathe.  Because really that's what I've needed to do for a long time.  Oh' I will start to cry and then pull it together, but what I needed was a fetal position in bed sobbing cry and so I did just that. Then I did what any Mother would do and picked myself up, dusted off, put on my big girl pants and hit the road.
I sort of laugh when people say "I don't know how you do it."  Cause really as if I have a choice. He's my son. What I wouldn't do for him. If I could give him my heart I would.  If I could take this away for him I would.  Maybe that's the hardest part of all...The control freak in me doesn't ultimately have control over this.  I have so many different doctors telling me so many different things and it becomes mind boggeling after awhile.
He has half a heart, when I doubt anything I have to bring him because I would never forgive myself if something happened because I didn't come.  I am Mom and the one who takes charge of all his medical care, appointments, hospital stays, visits and what nots. I am constantly scanning him, assessing, checking color. When he was here last week I left for an hour to go take a shower. When I came back I was in his room all of two minutes. I did what I always do and scanned him from head to toe and I said to the nurse "his i.v. is out."  Sure enough, she pulled back the tape and his arm was a log where all the iv fluids that were meant to go into his vein went into the tissue instead.  Nothing a little motrin couldn't fix, but I caught it, immediately because every time I see him I do a full body scan.  My mind never stops checking him.  I don't know that people realize just how much I watch him like a hawk.  It's a big burden to bear.
While most days I make lemonade out of our lemons, tonight I just want to be home in my bed off in never never land. I don't want to lay on plastic pillows on a vinyl couch listening to nurses continually walk in and out waking up my baby boy who just as desperately needs sleep.
He and I could both use a little R&R somewhere far, far away where life consists of walks on the beach and naps in a hammock with him nestled on my chest.
Hey, a girl can dream right....

Now that I have put fingers to keyboard and allowed myself diarrhea of the mind, maybe I will finally be able to fall asleep.  For tomorrow is a new day and surely it can only get better than today.  It will, it has to...

Ooh life! You can try to knock me down...but I always get back up for my babies!

Somehow, someway the strength is there when you think you have nothing left and for that I am so grateful.



Amy Bennett said...

Ugh...I am so sorry to read this. Although my little guy is younger than yours, I can totally relate. He was admitted to the hospital 2x between his Norwood and his Glenn (for a total of more than 9 weeks) and we've had one ER trip since. EVERY SINGLE TIME I bawled my eyes out as soon as I realized we were headed back to the hospital. It sucks. And it's SO NOT FAIR. Praying for sweet Pax (and mama!) tonight.

Heart Hugs,

cici said...

And we are there praying for you both sweetheart, all the way.

Neha said...

Breaks my heart to read all this. You'd be sleeping as I write this and I hope and pray that both of you have a good night's rest and that Paxton feels better. take care. Love and prays always!

Jenny Lincoln said...

Sending big hugs and many prayers to your family. I hope whatever is keeping Paxton from being home gets solved soon.

Heart hugs,


Melissa said...

Just keep doing what your doing FIGHTING For your baby! Your Awesome he is so lucky to have such a Wonderful Mother to watch out for him always. Nobody knows him better than you! Praying hard for Paxton and you.
I wanted to ask if it was okay to put your blog under our heart friends on our blog?

One of US! said...

Praying for you! Sending you A big HUG!

rudysbeat said...

Just want you to know we continue to read and pray for you, so grateful for the way you capture our shared journey--both the ability to recognize the beauty of life and the angst that comes with having a sick child. You've hit the nail on what we feel with our little heart warriors--it's always there, we're always vigilant and often questioning their condition--knowing that a turn here or there could mean a return trip to the hospital (we happen to be 2hrs away too--yuck!). That's a unique burden of stress to carry and we are sorry, but want you to know that you aren't alone.

Sorry for the return to the hospital and the way it feels to have the rest of the world keep spinning. Sorry for the burden it places on the other kids and for the heartbreak that comes when we can't be in two places at once. Our greatest comfort is found in the fact that Jesus is bigger and more sufficient than any of this--that's what's sustaining you to be an incredible mom who goes to such lengths for all of her children.

Thanks for not denying the aches and the tears. We're praying for God's comfort for you and your family and continued safety for Pax.

Praying for the Wests on the West Coast,

Rolf and Trish (Rudy HLHS)
Santa Barbara, CA

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