Today was a rather long and unpleasant day. We arrived at MDA at 6:15 and was ushered into a cubicle where I was given a gown, you know, one of those garments that is open in the back to make your stomach more accessible; a small pair of skid proof slippers that covered half my foot and a shopping bag for personal items. The good doctor came in and told me a little more about the procedure, answered my questions (I didn't have any) and said he would see me in the operating room. He did and next I knew I was O-U-T. Probably the best I've felt in three weeks.
I woke up in the recovery room (It was the same room where I started) and proceeded to get dressed. Nurse R was there armed with notebooks and a working pen which she used to take copius notes. The dietician came by and showed us how to work the feeding tube. I'm sure it's easy but it looked pretty involved and complicated. As long as Nurse R has it mastered, I'll be okay. I was given a half of a can of formula and the tube was put through it's paces. It seemed fairly easy. From there We went to Radiation. We were told that supplies would be brought to us. They included 24 cans of formula, assorted constipation medicines, mucus disolving medicine and other assorted potions.
At Radiation, I had a severe problem not the least of it was the pain associated with the placement of the tube. The real problem was as it has always been, putting the stent in my mouth without getting sick. I couldn't do it so I went up to see the doctor. I didn't see her but I did see her nurse, Sherry Garcia who fixed me up with another numbing solution and accompanied me back down to Radiation. After several attempts I was able to get the stent in place and got on with the daily treatment.
Sally returned with a wheelchair holding our drugs and feeding supplies. I walked to the valet station and the car. I was nauseous and felt lousy, but I was going home and that was good. Twenty minutes later we were home and I was ensconced in my bed with my red blanket. ...but not for long.
It was now time for a feeding. As easy as setting up seemed in the hospital was as difficult as it was at home. I thought Nurse R was going to lose it but she came around and embraced the task.(Well, maybe that's a little generous) Through process of elimination we figured out how to do the feeding and take some medicine. It certainly beat swallowing but I also know that swallowing is in my future. So, I'm set until the next feeding.
The hospital or food service brought by the next weeks supply of formula and the plastic bags with which to dispense same. Apparently this is all submitted to my Insurance Company as I was not presented with a bill. My kitchen counter is now a miniature drug emporium. I don't know what it's all for but I'm certain I have some splendid mix and match opportunities. Tomorrow will mark the end of Week III and treatment 19 and then I have the weekend in which to recover.
Thursday, October 15, 2009
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Hello!
ReplyDeleteI found your blog and wanted to let you know about the Oley Foundation.
We offer free information and peer support for people on home tube or IV feeding. Check out our website at www.oley.org.
In particular you might be interested in the
• Tube Feeding Tips page
http://www.oley.org/tubetalks.html
• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm
• Tube Feeding Complication Chart
http://www.oley.org/charts/newHEN.pdf
If you have any questions or would like to be introduced to an experienced tube feeder, feel free to contact me.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
Charles, I feel your pain. The first few feedings were difficult for me as well, but it will become second nature, and you will be so grateful to have hydration, nutrition and medication. Start the drip slowly, then over the next few days and weeks, you will be able to speed up the process. I would recommend to keep swallowing as much as possible, as I still have some difficulty swallowing to this day.
ReplyDeleteKeep your eye on the big picture and keep plugging away.