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I ran my fingers through his beautiful wavy hair. 3 years old next week! Wow, who would have thought! I looked to his face. Those eyelashes were longer than any I have ever seen. I swear I could feel a breeze when he blinks!Jul 15, '09 by itsmeemtp
I looked up at the doctor across the crib who is still hovering over him and checking his ventilator and trachea. Wildly he flailed as the doctor touched his abdomen. I tried to calm him by holding his hand. This is the first I noticed his fingers, some webbed together nearly to the ends, and the digits not coming from the palm in a normal way, but more like a sunburst. I looked more closely at him then. His legs were small and his feet were clubfoot. He has a feeding tube in his distended abdomen. His lips were cracked and crusted and through his open mouth, I could see several jagged sharp teeth coming from his gums at odd angles. Froth poured from his nose. Through his cheeks he had 4 pins on each side that were screwed into his jaw. The doctor was “lengthening” his jaw, it had been broken during surgery and slowly each day, the screws were separated further and further. It looked incredibly painful.
When the doctor had finished the exam, I asked, “Is he receiving physical therapy?” I wondered about his contractures in his legs. The doctor looked at me and sort of laughed. “No! I am trying to convince him mom to sign a DNR order, but she won’t! This is his life, this is the best he is ever going to have. This is no life for anyone. He should not have ever gotten this far.”
I looked back at the baby. His head is the size of a basketball. His features so close together they would fit in the palm of my hand. His ears line up at his jaw. He blinked and looked right through me, not even seeing me. Maybe the doctor is right, I thought. This would really be a nightmare life to have.
Back in one of my classes, we had a discussion about ethics. I think I wrote something that seemed right to me at the time; honestly, I may have just blown it off and answered what sounded good. I wish I had given it more thought. What right does anyone have to keep this child alive in this state? Why not just disconnect him from the ventilator and let him rest in peace?
Again, I ran my fingers through his hair. I changed his diaper. His bottom was so raw, it was nearly bleeding. He has chronic liquid diarrhea. I applied his barrier ointment liberally. He wears adult diapers. Size small…. This is no life, is it Little One? I looked at him and he seemed to look right into my eyes. “God doesn’t make mistakes” someone said. I turned to see who was there. No one. Startled, I returned my gaze to his eyes, and he blinked, his stare gazed through me once again.
Rattled, I weighed his diaper, removed my gloves and gown and washed my hands. I sat down at the desk next to him in ICU where his paperwork is. As I was filling out his charts, his mom came in the room. We talked as she put on her gown and gloves. She climbed on the stool next to his crib and said “Hi Papa!”
I watched as they interacted. I saw the way he responded only to her, to her touch, her voice. They were connected. I saw the look of love in her eyes for him. Her face lit up, her eyes – I am not sure I have ever seen so much love in someone’s eyes. I felt mesmerized by the scene, I could not stop staring at them. She talked to him and played with his hair until he fell asleep, and then she came to sit in the chair beside me.
She began to tell me about him, her family. He was the 2nd born child. She had had 8 pregnancies. After he was born, he was immediately flown by helicopter to this hospital, and she did not get to see him for over a week. He has had a lot of surgeries, she said, but he’s getting better. He is my gift from God, she said. We all love him so much, his older brother wants their clothes to match so I have to buy them matching clothes, like twins! They love each other so much! He gets so happy when his older brother comes to read him stories and they like to watch cartoons together!
I wondered how much of this was fantasized in her mind – a strange way of coping with his chronic illness, I guess. Denial maybe?
But, it shook my foundation, my thoughts on who gets to “pull the plug”. Who has the “right to be God”…50 years ago, he would have been dead and buried. Now, through technology, he is kept alive. Who is right? Who is wrong?
We, as nursing students, are encouraged to Know What We Believe. That way, down the road, we won’t be shaken to our core when faced with situations such as this. I thought I knew what I believed. Now it is in my face. A mother looking down with kindness, compassion, care, love, gentleness and hope on her child who only seems to see her and respond to her touch and her voice.
A child that seems genuinely thrilled when she is near.
I now understood just why the mother could not sign the papers. She knew it better than anyone. God does not make mistakes.Last edit by Joe V on May 1, '12
itsmeemtp has been a member since Aug '08 - from 'Orange Grove, TX'. Posts: 25 Likes: 191
25,292 ViewsJul 15, '09 by Elizabeth, RNThis was beautifully written. But I am more concerned about the mistakes people and committees make. I once saw an unresponsive 90 year old with all four limbs amputated due to gangrene. Surgery was "required" to deal with a decub or something (this was many years ago). The patient coded in the OR but was resuscitated because it was policy to resuscitate anyone who codes in surgery even if they had a DNR. Sometimes death IS the best outcome....Jul 15, '09 by spenmomThank you so much for sharing.. It is so hard to see children in situations that look like there will be no happy ending. But, despite our best prognostications, they can and do exceed our expectations. Therefore, I totally understand this mother's refusal for a DNR. This is her child, and only she has that connection/bond which will allow the child to grow and develop (once out of the hospital) in ways that he otherwise wouldn't be able to. With children, I believe they all deserve a chance. I have seen too many (including my own child) exceed expectations to the point that physicians had no answers, were speechless, and so I believe that no, God does not make mistakes. There is suffering, but it is for a reason (not that we always understand), and with that suffering, both on the part of the mother and the child, comes a bond which is incredibly strong and incredibly special. Until you see it, like you did, you truly don't begin to understand it.
Thank you again for sharing such a personal story! Maybe someday, somehow all this will make sense. That is the only thought that keeps me sane sometimes...Jul 16, '09 by davidthenurseIts wonderful to see that there are people out there who are willing to acknowledge God in everything, esp. human life. Sadly, here in Australia, this acknowledgment is rarely seen. But yes, I thoroughly agree - we don't have the right to say whether one "should" or "should not" die.
And yes, God does NOT make mistakes. It's just that sometimes we do not see the complete picture, and hence may have a distorted view of situations like this.Jul 16, '09 by DaFreak71I guess ultimately this question presumes that there is a God. I think it's great that in your case the patient and mom showed signs of acknowledging each other though.
I had a pt who was born perfectly healthy but aspirated on a balloon when he was three years old. He can't smile, can't make noises, doesn't recognize anyone, has uncontrollable spasms, contractures up the wazzoo, and a family situation that made it clear he was a mere disability paycheck. I took care of him in his home and never saw parental interaction aside from the few times the pt was yelled at. Parent even told me not to suction his trach often because if the nurses paid too much attention to the pt "he would produce secretions just to get attention". Ummm...this is an individual with ZERO thinking abilities and of course....the pt is a DNR.
I think in this case (assuming there is a God) God didn't make a mistake...the parent did by not being as vigiliant in supervising around balloons. The other mistake was to keep him a DNR (he's almost 30 now). That's my opinion.
But in the case where the pt is not even dealt with warmly by the parents and relies on 16 hours a day of nursing care in the home while the parent watches TV...I kept asking myself "What is the point of all of this"? I did my best to take care of the pt (read to the pt, stroke the pts forehead, talk to pt during my shift, etc) but wow...it was hard and try as I might...I could not find any objective or subjective quality of life for this poor pt.
just myLast edit by DaFreak71 on Jul 16, '09 : Reason: Lame Typo's