Back to the "asleep" days. Having this funky jelly over Demetri's eyes was hard to explain to our visitors. The jelly was to keep Demetri's eyes moist and protected as he slept and was, I guess paralyzed to the point that he didn't have control of them. It was never, like the high frequency or ossilator vent [the ventilator that provided Demetri with well over a hundred breathes a minute and made his little body pounce about like a...hmm... can't think of anything but maybe like a massaging chair that kind of thumps really quick down your back], it was never, freakish or scary to me; it just was. But to explain it to others, the high frequency vent or the jelly in the half opened blank eyes of my son, made me realize how horrifying it must have looked [how horrifying it was]. Really, a little baby covered in tubes and wires going into unthinkable holes [belly button, wrist, side of chest, head, nose, mouth, hiney, penis, foot, oh and inner right thigh] and chest pouncing several hundred times per minute and eyes glazed over with a morbid blankness covered in jelly. Ughh. Even sounds bad in my head as I write it, can't imagine what it actually looked like. Cause really, I didn't see it. Just saw my baby. Maybe it was because I was there everyday and I was just used to it. I mean, I saw the stuff, I still see "the stuff" but they only bother me because I just want the gone and therefore him better.
Still in the PICU, Demetri was slowly weaned from the high frequency vent to the conventional one and then.... Drum roll please..... EXTUBATED!!! WoooHooo! Well, not all woohoo but woohoo. The time has come where we had to return to a little, just a little bit of normalcy. With the kids and I returning to school, Hector and I had begun taking turns staying at the Children's House while the other stayed at home [an hour and a half away from Hopkins]. On the day the docs decided to attempt the extubating, I was home with the kids. So, Hector went. All went well but Hector said that while they were pulling the tube he [Hector] thought he was going to pass out from holding his breathe! What a sight that must have been! The nurses always warn Hector that they only take care of the little ones, so if his big butt passes out they are not going to know what to do with him! Anyway, once extubated, the nurses had strict orders from me to shove that pacifier right in his mouth to get his sucking instinct going. They did and he went right with it! Then came that infamous cry that we had waited so long for! It wasn't long at all before that came. Once the kids were in bed, I was able to drive to Hopkins that night and by then Demetri was already making all kinds of little noises. I say little because it wasn't this belting baby cry that we are used to. It was this faint and very horse whisper of a cry but what a glorious one. My baby was breathing all on his own!!! What a moment when I walked in that room. Every nurse and doctor that passed our bed side [knowing them all quite well at this point] smiled and hugged me with joy! It was so exciting!
Within minutes of my standing there in utter amazement, Demetri's nurse asked if I was ready to hold him! AHHHHH! Yeah! What a freaking day! All this time and pain and joy and pain and joy and now I finally get to hold and hear my son! As the nurse prepared Demetri, still all tubed up with IV's, ng, and then some, for me to hold him I began to go a little numb. I remember her asking if I wanted a chair or if I wanted to stand. lol. I thought to myself, we better get that chair. My knees were shaking and maybe it was adrenaline but I felt funny all over. I remember thinking, just for a slither of a second, how much it sucked that Hector wasn't there. But I got over that real quick. Hector, another reason for me to realize his awesomeness. He was asked earlier when he watched Demetri get extubatedWhata guy! He was probably quite scared himself to hold the little guy. So anyway back to the moment! Oh what a feeling when his little warm body laid on mine. In my arms finally. I heard nothing and saw nothing but him. Close to four hours later when the nurse insisted that I not get a blood clot in my leg and she be able to give him his meds and change his diaper, I placed him back in his bed and returned home to the rest of my peacefully resting family.
So there it is. Our days in the PICU. With this monumental forward progress including breathing on his own, Demetri has been gladly booted out of the PICU today. He just is not PICU worthy anymore and I am totally cool with that. However, things are still no where near perfect as Demetri sets up shop back down in the NICU with his old buddies. Demetri didn't last long without oxygen as his pulmonary hypertension is still bad and his tachypnea [rapid breathing] is scaring the docs but he is still breathing on his own. Just needs quite a bit of a flow of O2 coming in to do so.He also is still on a massive amount of drugs that we now have to begin to very slowly wean him off of. Either way, we are totally blessed and looking forward to our future together. Thank you God for getting us through this. Everyday, thank you.
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