Monday, May 16, 2011

Back home

Although Dwight's goal is return to our Cape Cod home in west Columbus, he calls Mill Run home. He has been there, with many visits to the hospital interspersed, since last March.

After our adventure this weekend at Grant, he started the new week at Mill Run. He arrived mid afternoon Sunday and had to go through all the admittance procedures, again.

I was enjoying Isaac's 11th year celebration while Dwight was being transferred. We had all enjoyed a wonderful meal and conversation around the antique oak table that at one time celebrated birthdays at Dwight's parents house, then in our large dining room in Leetonia, and now continues on at the Hennhouse. The younger four cousins were at the kids table, lively, non stop conversation going on there to the point that none of them finished their meal. It was fun to observe, the boys had their own conversation, and the girls theirs, both unaware of the other conversation.

Just as plates were being cleared away Dwight called in a panic. The hospital had sent the old prescription list back (the same one we had to fight with them to get updated at Grant). And then, a nursing home Doctor, who has never seen Dwight, looked at it and decided that his pain meds and one other drug were too high and halved them. Why, oh why, do those in the medical profession make their decision on only what they see right in front of them and not look at the whole picture(aka history)? I am sounding like a broken record. (For those of you old enough to remember what happened with a badly scratched record, I am sure you are smiling!)

I really wanted to watch Isaac open his gifts, but I am well aware of my husbands need for me to be with him and help fight these battles. In his room were three Mill Run employees, 2 nurses and one of our favorite aids, in her last year of study to be a nurse. The one nurse was in charge (I had not meet her before), she was going to follow the drug orders, they were fine with her. I demanded to see them, I immediately recognized they were the OLD ones, with multiple hand written changes. I calmly explained her what was what, including getting the right paper work from Grant ASAP. Also that this was not Dwight's nursing home Doctor and I wanted them to follow the orders written by his nursing home Doctor, including calling her if necessary. It took about an hour, two cups of coffee, chocolate (both for me), alittle nagging and things were back to normal. I must say the aid was a great encourager to Dwight and I.

Several residents welcomed me back, saying they missed me. Not quite sure how to interpret that as a couple of them have dementia.

Things are not dull, ordinary or uneventful in the Shirey family and all branches thereof.

HAPPY BIRTHDAY ISAAC. MY FAVORITE: 11 year old, middle grandson and Isaac.

Saturday, May 14, 2011

Two days--few answers.

I can not begin to express the extreme frustrations of the last two days. When the Nursing Home call and said they needed to send Dwight to the hospital I never dreamt the fight we would have with hospital staff.

I knew immediately, from the description of Dwight's behavior, that he had another infection. My fear was, and still is, that there are more kidney stones.

But, because of his difficulty speaking in clear sentences, they treated him as if he was off his rocker. I understand that alot of what they did is standard for cases as this, but really, please listen to the spouse, or whoever that knows them best. I told them many times that this is normal for him when he has a bad infection. I really felt like getting a tape recorder and just hitting play, rewind, play, rewind, play......

After about an hour & a half (during which they did a head CAT scan, I am sure all his marbles are still there, and chest xray) they took a urine sample, one of the tests clearly showed a UTI. The other had to culture for 48 hours. They gave him two antibiotics by IV. Then they did another CAT scan, we were told it was of his abdominal region. We found out yesterday (Friday) that it was a chest CAT, with dye, looking for blood clots that could be breaking loose and causing his speech problems. When the kidney Doctor discovered the use of dye he was not happy, dye is hard on dialysis patients.

I, in turn, was again not happy that they continued to treat Dwight's symptoms as if he had a stroke or some other brain damage. Just treat the infection so the infection doesn't cause more damage. It was several months before we (the family) saw the effects of the infection from a year ago have less and less influence in Dwight's thinking. He is pretty much back to 'good ole Papa D'.

I was forced to confront a nurse who was being condescending to Dwight's situation and my requests. She would cut me off and let me know whatever I had to say was worthless and they would handle everything as they saw fit. It was not all sweetness, but she needed to know that we have a bigger picture than her little chart and her judgements. An air mattress (which Dwight must have, and has had at this hospital before--it is in the records and can be looked up) was ordered and delivered within two hours. And she became a person and treated me as one. We stilled had a couple small battles, especially when she tried to interpret a Doctors orders her way, going as far as to get a house doctor to write the orders her way (after all, what the kidney doctor wanted didn't make sense to her).. I insisted they do as prescribed. The first doctor was called---and followed.

At this point is seems Dwight as a rare bladder infection that needs an antibiotic by IV every 48 hours. Other tests, cultures are 'growing' and we didn't hear what the kidney CAT scan showed.

They did do dialysis today, and the tech/Dr did not use his fistula, said it is a very sloppy one. The people at his regular dialysis are very happy with it. His ports only worked for about 3 hours and they want to replace them, but did not do so today. I don't understand why some professionals think they are they only ones that can do a good job and criticise others in their own field.

Dwight is clear minded again and just wants to go back to Mill Run. I hope they can so Monday.

Thanks to all who have prayed for Dwight and who have inquired about him.
God is answering your prayers, and we are praying for blessings for your compassion to us.

Thursday, May 12, 2011

Surprises--Good and Bad

Saturday (before Mother's Day) I took Jackson and Aurora shopping. First to Bath and Body to get a couple of things to spoil myself. Then off to the nursery.

So much to look at, so very much. Both children enjoyed all the beauty. Trying to find something for the kids to get their mother was proving interesting as both had their own ideas, until we found a yellow rose bush. We carefully checked each one for the best one. Kristen was very surprised. And happy.

Surprise #1) they decided that Kiki and Mimi needed flowers also and they carefully examined the pansy baskets and bought us each one. Pansies are one of my favorites.

Surprise #2) as we were enjoying an early lunch there was a loud knock at the front door--there stood my grinning son with two beautiful hanging baskets for me. Thought he wasn't coming, but he loves surprising me and he can't stand missing mother's day. We spent a couple hours trimming my trees, they look like a pro did them!

Surprise #3) All three of my children and all five grandchildren visited me at work.

Surprise #4) A couple of weeks ago I brought a praying mantis cocoon in the house (in a bug jar). Yesterday I discovered hundreds of tiny, mantis in the jar. We let them go on my beautiful lilac bush last evening. When we checked on them this morning they had grown and were already changing from a dull brown to a light green.

Surprise #5) Jackson, who doesn't like bugs on him, let one walk all over his hand, with pleasure. Kristen has pictures.

Surprise #6) I am composing this in an ER room at Grant. Last evening my sweetheart was very tired, this morning the Nursing home was not happy with Dwight's inability to answer simple questions, we are. Waiting for test results.

Thursday, May 5, 2011

Oh...and number 4 and a frown.

My dear husband often has times of forgetfulness. An unfortunate result of the massive infection. I try to remember (like to think he shared some of his forgetfulness with me, he has always been like that. If any of you believe that is why I forget things you will definitely move up my list of favorite people.) Any how, I have several prompt questions I try to ask him each day so I am aware of all that is going on, including phone calls and visits.

# 4) Earlier this week he told me, "Oh, I started therapy last week." Really, last week?!?!?!

At this point, his therapy is relearning to sit on the edge of the bed. It is slow, as he gets dizzy and needs to learn to balance himself. He also is flexing his arm and shoulder muscles in the sitting posistion. He has new pain from that. The therapist is quite happy, stating he is quite motivated. We all know that.

The wound care Dr will closely watch his wound. If it appears it is slowing, or reversing the healing process the sitting time, and/or frequency will be reduced.

Frown: My dear children have been planning a nice Mother's Day celebration, including a surprise visit from Sam. But unfortunately I have to work all weekend, including 10-7 on Sunday (the end of a seven day stretch). Sam has decided not to come since he would hardly see me. Aurora is quite bummed about that, as I am sure the rest of grandkids are, they love their Uncle Sam and visits with him.

Think I will go buy myself a nice hanging basket for Dwight to give me....

Tuesday, May 3, 2011

Good News---1, 2, 3

1)--Dwight's wound care Dr may be good, but he is definitely lacking in good bedside manners. He has a very black and white personality, with 'the glass is half full' thrown in for good message. So, altho he does a good job with Dwight's wound, he rarely gives encouragement--only commands--often unreasonable commands. Until last time, Dwight has been doing all he can to keep unnecessary pressure off the wound--and it is working. Dr Woundcare says it is shrinking, and could be healed in six months.

2)--Dwight has had two failed fistulas placed in his left arm. Finally a Dr did vein mapping and a third one was put in. Today, two weeks ahead of schedule, they started using it with success. They can only use it for one direction of the dialysis for two weeks, but it was successful for all four hours today.

3)--Saturday, Tim & Karin, Tim parents, Dot & Bruce, Kristen and her friend Derek and all five children attacked the wheelchair ramp. They totally striped the deck off and did reconstruction on the landing outside the kitchen door, enlarging it to measurements Dwight requested for easier turning around to get into the house. There is new deck plywood from top to bottom and the bottom has an improved foundation. Sunday the Henn's returned and worked on the down spouts and clean up. It is wonderful. How can I ever say enough thanks to all of them? Karin took tons of pictures has posted some of them on her blog: Check them out. (Now it needs to stop raining so the basement dries out and the wood dries enough to paint it. Anyone have an idea when that will be?)