By ThinkJP.Consulting™ Copyright© 2015 - All Rights Reserved
The WORST day of my life was the night Johnny died. Johnny was the “baby” we never had. We had invested so many years and so much of ourselves into him that we couldn’t have loved him more if he had been conceived by us personally.
That’s why when we walked into the hospital room and saw him locked in a metal cage, banging his head against the poles, we couldn’t bear the sight. I had never seen a human being treated this way before, and I was not about to stand by and let it happen to Johnny. We put our complaint in to the nurse in charge but she felt justified in keeping him in the cage because he would not stay in his room. While we agreed that Johnny was a little “Houdini” that managed to escape all the restraints they tried, there just had to be a better solution than caging him in like an animal!
Johnny had a severe kidney malfunction. In fact, we were told that one of his kidneys was entirely calcified, and the other was not good. He was in a LOT of pain, and they were giving him high doses of morphine to make him comfortable. I wondered if the morphine was even working because he was agitated constantly. After more complaining, the Head Nurse still was not interested in satisfying our attempts to have Johnny more humanely treated. We finally called one of Johnny's doctors who also happened to be a personal friend. Our doctor friend spoke with Johnny’s team of caregivers and they decided to discharge Johnny into our care and allow us to give him the morphine at home. This is not what we were asking, but at that time it seemed the only solution. We couldn’t bear the pleading eyes that looked at us from behind that metal cage, so we agreed to give it a try. After all, how could we stand by while they treated our beloved Johnny this way?
Johnny was waiting for a lithotripsy treatment that would break up some of the
calcification in his better kidney.
This treatment would hopefully give him some relief from the intense pain, but
the machine they used came to our area only every two weeks.
The kidney specialist refused to send Johnny to another location for
treatment because of his severe retardation. Also there was more expense
involved to send Johnny to another location and since these expenses were covered
solely by state aid his specialist would not reconsider.
I would never accept such a lame explanation today, but at the time I was very vulnerable and put all of my trust in his
managing team. Had Jack been more
involved he would have fought harder on behalf of
Johnny’s care, but he was busy
picking up the slack of running the foster home while I was investing several
hours a day at the hospital tending to Johnny. The hospital staff didn’t seem to have the time to care for him as we
thought they should have, so I was there everyday to make sure he was bathed,
fed, loved, etc.
Finally we brought Johnny home from the hospital. We were all happy to have him back home with us. He still had bruises from his "caged" experience which made bringing him home worth the extra attention. Johnny was in severe pain most of the time now and it was very hard for him to focus on all the things we had taught him. He started to revert back to a lot of “old habits”. To keep him from hurting himself, either Jack or I would tie a sheet around us that was also attached to Johnny. That way we were able to work and still give Johnny the freedom to move around some without causing himself any harm. This time when he couldn’t stay in bed, Jack and I would sleep with him between us on the living room floor. We would take turns rubbing his head and his back, trying so hard to comfort him and let him know how much we loved him.
Johnny had been home with us from that hospital trip just a few days and I
really thought he was doing better.
He had eaten some, and I put him to bed on the couch by me so I could keep an
eye on him like always. As we were
sitting there, we heard a very strange breath come from Johnny and knew
instantly that something was wrong.
We tried to wake him, but he did not respond.
Jack picked Johnny up into his arms, still trying to wake him.
Johnny responded for a few short seconds to look at Jack who was telling
him how much we loved him. Johnny
then breathed one long, last scary-sounding breath and then he was out again.
I thought my heart would beat out of my chest as I very shakily dialed
911 as I watched our Johnny die in my husband’s arms.
Jack immediately began administering CPR.
Like my husband, I too was a CPR instructor, but when he yelled for me to help him with the breaths, I FROZE. He looked at me and there was no room for misunderstanding in his tone when he said, “NOW”. I stood there crying while feeling like my world was coming to an end. Through my tears I answered, “I can’t do this”.
Frustrated, Jack instinctively began administering the breaths himself, and by then I pulled myself together enough to help with the compressions. As often happens during CPR, Johnny vomited while Jack was administering the breaths. I can hardly bear the thought, but whenever Jack is questioned about it he just says, “I would have done anything for him.”
The emergency rescue team arrived and started Johnny on all the life support
equipment and I watched helplessly as they carried him from our home on a
stretcher. I finally lost all
control of my emotions as I fell onto the couch where Johnny had been resting
peacefully just a short time ago. I
hugged his pillow tightly to my face and took comfort from the familiar smell that
belonged to our precious Johnny.
What was he feeling now I wondered?
Was he frightened, or was he even aware of what was happening around him.
Jack called my parents to come and stay with the rest of the folks while we went
to the hospital to be with Johnny.
During the drive to the hospital, we couldn’t help but wonder what we would
find. Were they able to
successfully revive Johnny? If so,
would he know us? Would they
understand his own little special sign language if he tried to communicate with
them? Were they keeping him warm
enough?