Tuesday, June 21, 2011

I Know! I Know!

I can hear the chatter now about how long it's been since I have posted.  I like to think ya'll missed me enough ;)   I have been away from the computer for so long because I have been knee freaking deep in getting my sh*@t back together after two years of total complete chaos.  I am insanely type A when it comes to organizing and being on time and having it together only its kinda hard to have it all together when you have a special needs baby.  Lord have mercy just when you get it together you wind back up where you started, as in the hospital. Oh yes, we are camped out in room 561 here at All Children's Hospital once again. Only after being transported via ambulance of course because when Pax does it, he does it right!




So here's the sitch.... Pax has not been eating. Eating is essential for him to maintain his weight while his heart works so hard. He is also a baller walker now and runs after his brothers stealing whatever it is they might have in their hands, which leads to piercing screams round the clock.  So between not eating and walking Pax is looking a little...shall we say... biggest loserish.  Not bad, in fact for an HLHS baby he is actually rockstarish.  The main concern is losing instead of maintaining/ gaining and 4 bites of cottage cheese for breakfast and 1 1/2 chicken nuggets for lunch just will not suffice.  Although I can't say I would mind looking into his diet plan. I kid people, I kid!  : )
SO we load up to come get checked out for a typical appointment yesterday and Pax decides when I am just 15 miles from home to start projectile vomiting all over himself and the car.  I have nothing and I mean nothing to deal with that kind of mess (i.e. note to self, put emergency beach towels in car for times like that)  My "emergency tupperware box" in the trunk contained diapers, wipes, paci's, nuts, fruit snacks, crackers and the like, but no towels. Clearly food is always a priority in our house.
So I pulled over, stripped him, used blanks to clean up what I could, called Cardiology, tried to get my and hands to stop shaking.  There came the adrenaline folks. I knew what was coming.  Off to the ER we went.  By 6:30 pm last night we were admitted in St. Pete.  Baby "McDreamy" couldn't so much as be phased by all the chaos, he was just tickled peachy at all the ladies gathering round to ooh and ahh at him and let me tell you, boyfriend milked. it. up.


In a nutshell, they think he has gastritis from being on Asprin for such a long period of time, as in his whole life actually, so we are going to start him on trial Zantac and see if that helps get him to eat. If it does then we found the answer, if not we keep trial and erroring. I am hoping she figured it out though. Cardiac wise he looks to be right where he should be.  Praise God!
He even got to get out of bed for 20 minutes today and take a gander at the outside world.  And I got to get my exercise once he got tired taking his wagon for laps around the unit. Yay for me! Pretty sure I have gained a good 10 sneaking bites of Paxtons mac n' cheese that he won't eat.




Prior to our big adventure yesterday we have been one busy family going boating, to graduation/birthday parties and loving the time at home with no school or schedule to worry about. We wake up and end up where we end up.  Last week we wound up at the Petstore and came home with two fish one named "Austin" and the other named "Mason"  appropriate I suppose ; )








(we're not the wild wild wests for nothing)

So we relish the little things. We relish where we have been and how far we have come in two years.  We relish that our single ventricle boy is walking and talking like it's his job.  We relish the hard and the ugly for they have made this side of it awesome and beautiful.  You can jump on board and go where this life is going to take you or jump ship and never find the glory in saying you've made it through the single, hardest time in your life.  While this journey is far from over, we have decided to stay on board and fight through the good and the bad.  For this....





And for this....


Eat it up friends!  As I was wagon walking this afternoon I saw a 14 year old boy fighting for his life just down the hall.  Daddy was bedside patting his hand as alarms sounded and doctors surrounded his bed. This morning as I went downstairs to find some sort of caffeine, I once again looked around at all the exhausted, worn down people trudging in the same direction as I.  They were clearly here all night not sleeping just as Pax and I had not.  They each had their own story, that I will never know, but I know the look, that exhausted walk and I know that we all fight our own fights, but here in this hospital I am constantly reminded to find my blessings and eat them up.  Every. single. day!  For we never know just how long we will have.  It's a sad lesson, but a good one just the same because we parents of sick children never take for granted the time we do have.  Seeing that 14 year old boy fighting for his life made me wonder if that would be me one day with Pax.  Truth is, its very, very possible.  Makes me sick to my stomach, but reminds me to hug a little tighter and laugh a little longer.  I hope you all will follow my lead.



****************

~J


ps~thank you morgie porgie puddin pie for stepping in and taking over for however long we are gone. you know i would be a complete wreck if i didn't know you were there to completely entertain, teach and spoil the boys. love you.

1 comment:

Lorena M said...

Oh my goodness that Pax is a handsome boy and I love his hair. All 3 of your boys got some good looks, watch out when they are teenagers.

I'm sorry he's in the hospital again, but hopefully not for long. I'm glad cardiac wise he's on track. I continue to pray for little Pax and for you and your husband, for patience and strength and I still add in love although you can tell it oozes out of your family and that's so wonderful to see. I'm glad you popped in to update us, I always worry when you don't and hope and pray even harder that nothing bad has happened.

My Peeps

Visitors