The next few hours the boy drifted in and out. He did no damage with his self extubation....this is a surprise, I'm told he could have messed up a few things. We spent time waking him up every so often, they had to cut off all the sleepy meds before planned since he went all Hulk on us.
And then there was the fighting with his high flow breathing thing. A thing that looks like Bane in Batman. Go ahead and look up a picture I will wait. .....
He hated that mask, this was one of the hardest times for me. Fighting him to keep it on, holding his hands and wiping his tears. Telling him that yes he can do this. Can't is no longer a part of our vocabulary. I had to pull every trick I knew out of the books to keep him positive, not to mention to keep me fighting for us both.
The entire time the doctor was just steps away wanting to put that dang tube back in him. After what seemed like forever the respiratory therapist agreed to take this monster off of him. BUT dear boy, it is hanging right here ....and those tubes are here too.
The boy turns to me and says with such conviction, "They are not putting the stupid tube back in me." Then my boy, prove to them you don't need it. And he did.
He did every breathing exercise they threw at him. And some of his own. Band for the win! He had to explain to the medical staff what he was up to. A wonderful discussion about asthma patients and brass instruments was had.
Saturday we celebrated by watching Marshall University play ball on the grandma's iPad. We quietly cheered so as not to bother the other patients....but for a minute there, just one minute, it was easy to forget where we were. The boy slept through half the game. Which was OK.....when he woke up he was back. Fully there again. I missed him so much.
He was doing so well that night the doctor let him have a drink! A real life drink! He had hot tea.
You see, on our first night there he struck up a conversation with the nurse about tea. Who knows why, but he did. They compared their favorites and she promised him some of hers. When she had her next shift she brought me some tea bags for when he woke up and they allowed it. So hot tea my boy had. It was the best tea ever he told us.
Saturday night. I was less than ladylike at about 3 am. I am humbled by my grizzly momma bear side. Sometimes, I can only blame my bull headed lack of sleep. Or that is the excuse I'm sticking to.
I demanded to see the doctor. I may have said a few less than polite things. But all my boy wanted was to rest, and all i wanted was some answers. Somewhere in my temper tantrum the doctor decided he was safe to be moved away from their watchful eye (right beside the station) to the quiet, dark back corner. While he was being moved she talked to me and told me what I needed. So see?? Sometimes flying off the handle helps! The boy got upgraded to the presidential suite of the PICU. Large room, beautiful view and a private bathroom. And quiet. Did I mention it was quiet?
Sunday a new doctor came around. A pediatrician from DC. We love him. He let the boy eat. He let the boy walk! He stopped us on one of our laps around the nurses station and said....what are you doing why are you still here??
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