that I have had an attitude all this week. Just feeling blue. Tucker has had a few episodes of awake time, he has held his blood pressure, sats and everything he is supposed to do to show progress in the relaxation of his left ventricle.....good right! Great!!! Awesome! However, the doctors are less enthusiasitc and continue to put more sedation on board. When he has more sedation, he does not breath over the ventilator...which is NO progress forward to the ultimate goal. This happened several times over the last 2 days, since paralytic was lifted. Each time, they continue to put more and more drugs on board, putting him in a spot that he doesnt breath over the vent. WHY???? Because they want to have control over the situation, control over the vent, control over when and how Tucker will come off the vent. SO, until they find a sedation that will keep him happy but breathing this is the game we will play....to be honest, I dont think they will ever find it. So, will they keep this game up for weeks? for months? until they figure it out or will the fighting the sedation while Tucker is trying to fight the tube put Tucker back at risk for some kind of failure and we will take steps back after doing this dance for weeks....? Good questions right? I think so....so I have asked over and over again the past two days. This is my frustration.....We feel that Tucker is trying to tell them, he is fiesty, he wakes up, holds out his arms to be held, he holds your finger, he looks into your eyes, he kicks his feet,,,,a cry for normal, a cry for help.....then they kill his spirit and download all the drugs until he hits a brick wall. Then it wears off and we start all over again. A terrible feeling of helplessness.
So yesterday I couldnt stand it anymore and stayed away. And frankly today might be the same way. I am just so upset, our day scheduled home has passed by and there is no "time frame" in this at all....it is a day to day basis and I HATE that!!
Birthday Number Twelve
5 weeks ago