Getting Better….I Think

Don has moved from The hospital in Wichita (60 miles away) to a Care Home in HIllsboro (10 miles away). It was a mess finding out where he was going after release from the hospital! We wanted him moved to the are Care Home in Marion and told the Case Manager that. She told us that it had been arranged and we were to have him there the next day. She mentioned that it would be a swing bed and the hospital would need us to bring our feeding machine and feed tubes. She also said they could only keep him there for a week and he wasn’t eligible for Rehabilitation.  She also said that I would be taught how to operate the feeding machine while Don was there. The machine was ours and I had already been taught now to use it and had used it without any of the Home Health nurses being there!!! I argued with the nurse, Sharon over the phone but got no where so went to the Care Home to talk to her in person. When I got there I was told they didn’t have anyone employed there named Sharon!!! It turns out that the Case Manager had called the hospital instead of the Care Home!! I went to the hospital, found Sharon and found out that I would also have to be there with Don 24/7! When I explained everything, she agreed that a swing bed in the hospital was not the right thing for us! So we went to the Care Home together where we found out that they didn’t have a vacancy! One of the nurses at the Care Home also worked at the Home in Hillsboro and said they had a vacancy. I said that I would discuss the issue with Don’s Case Manager in Wichita and get back with them.

The next morning I got a text from Don saying that he had a setback and they weren’t going to release him that day. I headed to Wichita. Halfway there Don called me and said that the doctor ordered that we go to the hospital swing bed in Marion and if we refused Medicare wouldn’t pay for anywhere else we went!! I was hot and loaded for bear when I walked into Don’s room. His Case Manager and her boss were standing at his bedside. First words out of their mouths were “Don is going to the Care Home in Hillsboro!”  That saved me a whole lot of yelling and maybe a bail bond!  LOL!

So, Don’s daughter picked him up and took him to the home that morning. (It is difficult for him to get into my car) This was Friday and he did well until the weekend when they had a skeleton crew and no one knew how to operate the feeding machine. I had to train all his caregivers, including the nurses.  There was some hiccups but we got through it. Sunday was especially tough when he vomited 7 times! Vomiting after his type of surgery was the worse thing that could happen.  He had the Whipple Procedure if anyone wants to google it. He was supposed to be eating small portions six times a day. However, he wasn’t even offered anything until supper time! I thought maybe it was because of the vomiting but found out it was a screw up by staff. I had a long talk with the bosses this morning! They have been “right on it” so far this morning.

Don has lost around 40 pounds and is very weak. He never gets out of bed. His PT therapist came in the morning while he was asleep. she asked me if I thought she should wake him up and have him do PT. I said that I thought she should, laying in bed wasn’t going to get his strength back. He wasn’t happy with me about it but he did really well an looked much better afterward. He is taking a nap now so I am getting things done her at home, then will go back. I left a small dish of grapes (his favorite) and told him that at least one of those better be gone when I get back and it had better not be in the trash can. Home Health has told me that loved ones tend to coddle them instead of encouraging them to do what they need to do. Don is afraid to eat because he is afraid it will make him sick. He can’t get off the feeding machine until he eats. He did eat 1/2 a small bowl of oatmeal and drank a little glass of milk this morning. That’s the most he has eaten in a month!

Please continue your prayers!


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December 3, 2018

Omg woman. This explains the cryptic FB post. I can’t believe what you’ve been through! (((Hugs))) and prayers

December 7, 2018

I hope Don is eating better and off the feeding machine by now.  I’m continuing to keep you and Don in my thoughts.

December 8, 2018

I hate to  hear that you are going through all this.  I guess we all do what we have to do.  Swingbed was a lifesaver for me.  After my repair surgery I spent 2 1/2 weeks in ours.  Hope Don improves soon.