Aug 17, 2012 - 7:19 pm
What a roller coaster ride the past nine days have been. We went to Sturgis and ended up flying home on Wednesday August 8 through the day and early morning Thursday. Finally got to Bronson hospital on Thursday morning. Things proceeded to go downhill very quickly and there was test after another and no answers and then a nurse made a mistake and that caused the PET scan to be done on this past Thursday rather than last Sunday as planned. The scheduling availability of the mobile unit was very tight and first opening they said they had was Thurs. anyway we got the results today and As I suspected there is no cancer indicated. Yippee!!!!
There is possibly an issue one two with his heart and they are doing an echo tomorrow to check that out. Don has been having swelling as in fluid retention in both feet and one day in the left arm and hand and sometimes in the right arm and hand. The PET scan shows some fluid so they are checking that out and I am not even going to speculate on what all that could be. But his body was run down about as much as it could be and still be conscious. What a horrible terrifying week and I am glad it is over and after that I am confident we can handle whatever is going on with the heart.
Freida and Terry kept you updated with the texts I was sending them so I won't bore you with all the crappy details but trust me I seriously thought we were headed to the end of the battle.
On Monday they are going to put In a J-tube for nutrition at home. Because of the stress his body endured he is very run down and still tired but he will bounce back. He got down to 130 lbs from 154 lbs in June when all the pain started to begin with. The med onc says the pain must have been from constipation all along but I am not sure I am convinced of that. Time will tell. He is on a fentanyl patch which is controlling the pain and the constipation is no longer an issue so why would he still have pain?? His weight has gone from 130 lbs back to 154 from Saturday to today a total of five days.
They finally started TPN nutrition thru a PICC line at 10:10 pm last Monday night and within hours you could see a difference. They gave him two shots in the belly for constipation; one on Friday and another on Sunday and then scoped him on Monday. Major improvement began.
This was a case of extremely severe dehydration, constipation and lack of nutrition which has been building up by the day since that gastroenterologist did a scope on Don to see if the pain was from within and that doctor told Don he needed to learn to live with the pain and perhaps would need to take pain meds the rest of his life. I never believed that crap for one minute and made an appt for a barium swallow small bowel follow through with the surgeon for the Monday after we would have returned from Sturgis. He did not last that long. The whole month of July was screwed up as usual for us - first the primary care doc was on vacation and then the med onc was on vacation and finally the surgeon was on vacation and then we were. Very similar to the Thanksgiving andChristmas and New Years holidays we had to work around when Don was first diagnosed.
The medicine prescribed for pain was Norco and that just didn't work out for Don. Hit made him sleep and when you are sleeping you are. It eating or drinking enough which is a challenge even when you are awake so things just snowballed and everyday It got worse.
Thank you for keeping Don in your prayers and thoughts. I am happy to have a chance to report to you on the events of the past 9 days of hell. I am using our daughters IPad and I don't have the full hang of things but I am figuring it out.
Love, hugs and FEC,