9-14-2010 What a journey we have all experienced thus far! Up and down, up and down and around we go. No one, no tour, no consultation, no testing, or research could EVER have prepared us for this. I can't help but cry over and over for the pain that my son has had to endure. They say he will never remember, but I will. I have laughed, cried, and prayed like no other time in my life. We are now eight weeks into Demetri's life (I think..time has slipped from comprehension these days) and eight months into this nightmare. Right now I have no idea when it will end. I have lost total control of everything. I want him to be better SO BAD but I can do nothing but touch him and let him know I am there. So, today, after weeks of NICU, PICU, High Frequency Vents, conventional vents, CPAP, supplements, lines, central lines, viagra?!, [I get it now but initially it sounded a little silly]PPHN, intubated, extubated, re-intubated, diuretics, nitrix oxide, wacky anatomy, hypertension, hypotensive, lung disease, de-sat, bradying,seizures, strokes,EEG,EKG, "Shooting X-Ray", ERG, MRI, Cardiac Cath, Echocardiogram, Blood Gases, PIO2, NG, ND, suction, ECMO, death, oh and by the way, a diaphragmatic hernia....cerebral fluid, blockages, shunt, splints, brain damage, upper gi, lower gi, acid reflux... [oh that's one that would stick!]...So today we know, oh wait, ASD, PDA, hole in the heart... So today as I sit...more... messed up bowls and intesitnes, (can't even remember what that one is called off the top of my head). So today as I sit I can only wonder what new condition or tube Demetri will have in the morning. Tomorrow Demetri will get a MRI, and the lord willing, will let him prepare for a healthy normal trip home. Today Demetri went to the Cath Lab. No need for heart surgery now they say! Another awesome day because we are all alive and breathing but another night of uncertainty and fear of what tomorrow will bring. Thanks Amie [best RN/friend EVER] for this journal!
In regards to the title of this post...I see this entry as a eight week sum-up... I think that though many, like us, continue to deal with new complications even today, overall the first eight weeks either numbed us or prepared us perfectly for the future. Though still turbulent and uncertain at times, what we lived during those first weeks was indescribable. My goal with this entry is NOT to scare off anyone, it is to share what may be and what can be...For us what can be has become pure beauty: Our life with Demetri today is hard work but rewarding and precious. We value every moment, every moment, with of course the occasional break down. Usually the break down comes with a silly incident like his g-tube leaking on his sheets while he sleeps...AHHH! But always within seconds we remember and our tantrums turn to glory once again.
I am looking forward to the next post. Hopefully I will have time post soon but with Demetri's birthday !!! coming in the next couple of weeks, posting may have to wait....As the next post will tell, Demetri's Cath Lab results as everything else were not a sure thing...And as a matter of fact he was no where near coming home...Stay Tuned. And Thank You for reading our story.
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