Originally Posted: 5/13/2011
My Dad was 2 days from being discharged home after his stem cell transplant in February when he was one of four unlucky patients to contract the H1N1 flu on the unit. Yes, he had had his flu shot, but when they wipe out your immune system for the transplant, that immunity is often lost. When you have zero immune system, it becomes all too easy for nasty bugs to attack your system. S0 he went from 2 days from going home, to intubated, sedated, and paralyzed in the ICU. Safe to say no one saw this coming, including his oncologist. Thus far, Dad had handled the transplant like a champ.
In some ways, it was a relief for me once he was transferred to the ICU. I had had concerns the day before that his respiratory status was declining. Every time they checked his pulse ox, it was only in the high-80s on the highest amount of oxygen available on their unit. But no one seemed too concerned, because Dad appeared to be his normal self, even making business phone calls with his oxygen mask on. Working in the PICU, I feel more at home with the ICU. I am familiar with the drugs and the equipment, the goals of care, and the protocols and procedures which are unique to the intensive care environment. I didn’t like that my Dad was sick enough to go to the ICU, but when they intubated him, the resident told me he thought it would only be for a day or so- long enough to get a sample of the fluid from his lungs to identify what was causing the pneumonia so that they could better identify which drugs to treat it with.
My aunt and I followed him to the ICU and were asked to wait out in the waiting room while they stabilized him. I knew something was wrong when it had been over 1 hour, and they had told us it would be 30 minutes max. Being an empowered family member, I walked back to his room, looking for someone to ask for help. It was then I realized how sick he was. It took them over 3 hours to stabilize him, during which time we were sitting out in the waiting room. Only at one point did the fellow come out to make sure he was still a full code. “Of course he’s a full code,” I told her. Just a few hours earlier, he had been sitting up, talking to me, wanting to eat his breakfast, then asking to see the endotracheal tube before they put it in. It was then it hit me how bad this had gotten, how fast.
That evening his oncologist came by to see us. I can still hear his words to this day. “You are not here to make friends. You are here to save his life,” he told us. “Whatever you do, don’t let them take anything away before you talk to me. In my opinion, it is better to perhaps prolong his suffering for one more day, knowing that we did everything we possibly could to save him.”
I am starting a series of posts about the role of patient advocacy in the medical setting. I know that being an empowered family member played a large part in why my Dad is still alive today, and this experience has increased my awareness of the importance of empowering other family members to do the same.