When my nephew was 13 years old, he had open heart surgery. Thank goodness his mother, my sister, had good medical insurance. Many people do not. It was a routine doctor's check-up that discovered the irregularity in his heart beat. Since they live on the other side of the country with no other relatives close by, one of my sisters and I flew out to offer our support.
The surgery went well, and within a day, he was anxious to get moving. I imagine that's what 13 year old boys must be like. His mom, brother, step-father, a couple of friends, and two aunts spent many hours in his hospital room playing games and making him laugh. But what he really wanted was some fresh air. A couple of days we took him in his wheel chair down the elevator to an outside courtyard for a picnic lunch.
Now, this is a very good children's hospital. One of the best in the country. Another wing of the hospital is separated by an underground tunnel. One day, while my nephew was napping, everyone wanted to get something to eat at the other wing. We had gotten tired of the hospital food we had been eating for the past few days. We didn't want my nephew to wake up all alone, so I decided to stay in his room. When he woke up, he wanted to know where everyone had gone. Being 13 years old, he said "let's go find them".
So, I put him in his wheel chair and off we went. Down an elevator, though a darkened tunnel, up another elevator, and across a lobby. When we finally met up with the others, we laughed all the way back to his hospital room.
After about 4 days, my sister and I had to fly home. As we were wheeling my nephew to an elevator, a nurse walked by and asked where we were going. "I'm taking my son downstairs so he can say good-bye to his aunts", my sister said. "Oh, no", the nurse replied. "He just had heart surgery. He's not supposed to leave the floor."
Oops.
I'm happy to report that fourteen years later, my nephew is happy, healthy and doing well, despite our shenanigans.
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Where did they think he was? They probably didn't even notice he was gone. We have spent thousands of days in hospital with our kids over the past 19 years and we have a firm unbreakable rule. NEVER leave them unattended by one of us for even a minute! TDoctors, nurses and hospitals, care and do their best but you would not believe the potential devastating mistakes that we have caught by ALWAYS being there and making sure that what is proposed to be implemented is appropriate and necessary. Even with "do not treat without parental notification" orders are not good enough- though they are an important tool.
ReplyDeleteWe know 2 families who lost a child from hospital mistakes that the parents would have stopped cold had they been there.
IMO, whether minor or adult, a knowedgable, assertive advocate must be present 24/7 when the patient is not fully alert and aware of what is going on around them. Mistakes happen and its critical that someone is there to help the hospital and doctors. Oh the horror stories I can tell- even when you are there, if the situation is complicated enough, awful things can still occur and it requires a great deal of assertiveness and understanding the system in large hopsitals to make sure the patient gets everything they need and nothing that they don't. I mentor parents on a voluntary basis that are just entering the hopital scene with children with chronic serious conditions to help them understand how the places work, what the limitations are, and how to advocate for their children. Those places can unintentionally roll right over you. They care and do their best but 1) Just like everywhere else, there are lame brains on staff, and 2) they are so deeply ingrained in their system, they don't realize how foriegn virtually every aspect of a large hospital is for lay-people and therefore how to lay things out in a manner that allows the advocate to feel confident in helping to make good decisions for the patient.
There you go again, having fun in a normally non fun situation! I wish you were at my recent "minor" surgury. Aroung 5:30 pm I was taken to my room. I drifted in and out of sleep but was getting really thirsty since I had not been allowed any food or drink after midnight the night before. The call button was on a table out of my reach. Finally someone came in to check on the woman in the other bed. Yeah! Then they left, without checking on me. By this time I had to use the bathroom also. Eventually a nurse came in looking shocked to see me in the bed. He asked "When did you get here?"
ReplyDeleteThis is a very good hospital. I also found out that having Health Insurance really makes a difference. In the operating room for my "minor" surgury there were TEN people taking part.
Stew, one thing I've learned after my mother broke her hip - you have you be your own advocate. Doctors and nurses are overworked in many cases (I know several). Several years ago my husband had minor hernia surgery just before Christmas. Due to complications, he ended up spending 11 days in the hospital and almost lost his leg. Because it was the holidays, most seasoned doctors were on vacation, so at first he was attended by interns. I stayed with him 24/7, and am thankful that I offended the interns by shouting "I WANT A REAL DOCTOR AND I WANT ONE NOW" (I apoligize to my doctor friends...). A few years ago my husband's niece died after she was released from a Florida hospital because she did not have medical insurance.
ReplyDeleteFIVE, I'm happy you made it through. Watch for a future post about 'being invisible'
P.S. to Stew....I hope you do not think we were being irresponsible...
ReplyDeleteNo, not at all P&P. My point was that they didn't even notice you were missing. I've rolle dmy kids to the cafeteria once they were stbel but not yet released.
ReplyDeleteThe "holiday syndrome" is very real-- been through it many times. The only reason to be in a hospital on a holiday is a dire emergency.