March 2006, Chapter 2

Tim and I had received permission to be with Gregory in ICU. Our combined task was to stay out of the way of the Doctors and Nurses who deligently worked over Greg.

For years my son had a primary care doctor. Whenever Greg was in the hospital he always showed up and journeyed with us through Greg's bouts with pneumonia. His presence brought safety and deeply felt concern and a knowing that Greg was in the best of care. This past year, the wonderful doctor, our unsung hero, left and he was no longer Greg's doctor. As Greg's doctor he had given Greg his email address at the hospital. Greg could email him about his health and let the doctor know before he arrived about his concerns. This doctor still emails my sone today, even though he isn't his doctor anymore.

Now when Greg goes to the hospital there is no doctor that truly knows Greg. It is both frustrating and scarey.

I explained to one of the Doctor's that Gregory had been released exactly a week ago and that the attending physician at that time, I was not impressed with. I refered to him as "Mr. Stuffed Shirt," as I explained that when he made his rounds in the morning he stood at least two feet away from Gregory's bed, arms folded across his chest, and commenced to tell his interns the reason anyone in Gregory's condition ran a high temp., was either because he had a urinary track infection or an infection at his site, (Greg is a tube feeder). Neither was true. If he had read Greg's chart he would have seen that the urinary lab test was done the day before and it was negative. Also, there was no irritation around Gregory's site; he has never had an infection at his site area because we are so meticulous in Gregory's care. Knowing that his body is compromised in fighting infection we are all mindful of his care being careful to take the necessary percautions to keep him healthy.

"Dr Stuff Shirt" is a very distinguished looking man with salt and pepper hair, handsome chiseled face; however, when you asked a question he had a way of making you feel "stupid."
This was not just my opinion, the caregivers felt the same way; neither did we feel listened to when we tried to explain certain things to him to help him know Gregory better, so he would know what was in the range of norm and what wasn't.

After three days Gregory was sent home, the Wednesday before he was admitted into ICU. When the EMT's brought him in, I was taken aback because Gregory was on oxygen when they brought him into the house on the stretcher.

"Why is he on oxygen?" I asked.

"Isn't he on oxygen here?" the EMT's asked?

"No."

"Well we noticed his oxygen was a little low at the hospital; his oxygen stat was 92; it should range between 96 and 100."

"I was not told that there was anything abnormal about his oxygen stats." I replied.

I called the hospital; no one at the nurse's station knew anything; apparently Gregory's records had already been sent somewhere, none of the staff was on that was there when we left, so I got no where.

The EMT's talked to them while I was making Gregory more comfortable. When I came back out into the kitchen where they had just gotton off the phone, they were looking at each other and shaking there heads,as though in seeming disbelief. They told me to watch Greg and if he seemed lethargic or got any worse, call the hospital.

Now, Gregory was recuping from pneumonia. How was I to know the difference between normal weakness or if he was worse?

Oviously, Gregory got much worse for here we were in ICU. Gregory's doctor this time was a true gem. He was everything a doctor should be, compassionate and a listener. When he heard what had happened to us the previous week he called the person who deals with grievances to come and take my report of the incident. He heard me, he understood my frustration.

Tomorrow, I will write about our experiences in ICU.