We are going home on Hospice

My dearest friends,

Okay, where to begin. I guess where we left off. Last Thursday was great for everyone. Cindy and I enjoyed a few hours at the beach. Daddy participated in therapy morning AND afternoon and was eating fairly well. He did open up to Barbara and said he was afraid of dying while here at rehab and being alone. He wants to go home.

Friday things began to change. Daddy had asked for something for anxiety, he was having panic attacks. He was given Ativan .5mg about 10:30am and was sound asleep when we arrived with lunch for him at 12:30. He had eaten very little of the tray he was provided at noon and at 1:30 he was given his antibiotic on basically an empty stomach. That began a cycle of nausea that really has not stopped since. We asked that he not be given any more Ativan during the day as it really knocked him out. So, no therapy on Friday.

Barbara went to work on Saturday and I came to rehab to stay with daddy from 10am to 1pm. The nurse reported he had been having a good morning: ate all his breakfast, took his pills, was fully dressed and went down to therapy. When I arrived a little after 10 he was sitting in the wheelchair fully dressed complaining of nausea. He had already been given Phenergan for this. Within a short time he wanted back in bed and went sound asleep. He basically then slept for the rest of the day. So, limited therapy on Saturday. Due to the nausea continuing he also ate very little if any at lunch and dinner. Barbara was very worried he was not eating. He cannot afford to loose any more weight. He also began coughing more with a rattling sound in his lungs.

Barbara spent Sunday with him. Again he complained all day of the nausea, heartburn and now a headache. She tried to get him to eat but could only get him to drink the Glucerna most of the time. He will not drink water, doesn't like the taste, so we are concerned about dehydration. He spoke a lot of wanting to go home. When Cindy arrived Julie and Ricky were already here. Shortly after Barbara and Ricky went outside and had a very long talk. Ricky lost his mom to ovarian cancer a few years ago and she was on Hospice. That talked helped her to see that they were there not just for the end but for the now. She made the decision last night to take him home on Hospice as soon as it could be arranged.

Cindy, Barbara, Ricky and I met for breakfast this morning to be sure we were all on the same page. We agreed to get the ball rolling and get him home as soon as possible. We told the nursing staff when we arrived we wanted to talk to the psychiatrist and house doctors before they saw daddy today so we could tell them of our wishes. Therapy did get him up in the wheelchair this morning so Barbara and Cindy took him outside for about 10 minutes. Hope to post those pics later tonight.

Daddy was already scheduled to be seen by the house psychologist, Dr Skip, who was wonderful. We spoke to him privately before and after he did the evaluation. And he was so patient as daddy kept falling asleep during the interview. He is depressed but says it is from everything he has been through. Dr Skip did not want to put him on any medication as he is already on so much. We were very glad for this. We told him of our wish to take him home and why and he thought that was the best thing we could do. His report will be on the chart and Hospice can get a copy so they can take over that area for us.

We spoke with Jane, house social worker, next and told her of our desire for Hospice. She made the call and at 3pm we met with Donna from NE FL Community Hospice. She did a great job explaining who they are and everything they can do for us. Barbara signed all the papers. All we need now if for the house doc to say okay for discharge to hospice at home and Dr Patel, daddy's oncologist, will be his primary physician.

All this to say....we are going home on Hospice. Equipment has been ordered for the home and will be delivered tomorrow. The couch in their living room is being removed now to make room for the hospital bed. We have a Walmart list for things we will need until Community Hospice can bring our supplies. Mary, the admitting nurse is coming tomorrow at 1pm to do the nursing assessment and as long as we have the discharge order daddy will be transported home when she gets through.

We still don't know where we stand with the colon cancer. It has been 3 and 1/2 months since his last PET scan which showed recurrent colon cancer after 12 chemo treatments. Hopefully daddy can have another PET scan very soon so we can know exactly what we are dealing with.

He is still complaining of nausea and sever indigestion. Nothing seems to be helping either one. Dinner is here and he wants nothing to do with it. So far he won't even drink the Glucerna. The one good thing is he has taken the last of the antibiotics. We are hoping the nausea will now go away.

Please pray for:

- Smooth transition home

- Peace that passes all understanding for the family

- Daddy's appetite and desire to drink fluids to increase

- PET scan to be ordered quickly

- God to be merciful

And I'll praise you in this storm

and I will lift my hands

that you are who you are

no matter who I am

and every tear I've cried

you hold in your hand

you never left my side

and though my heart is torn

I will praise you in this storm!

Standing firm in the midst of this storm.