Another day, another problem

[yaka]

Good morning,

I just spoke to my mother. She went to the hospital last Monday because she had sores on her legs, her feet were swollen and her ankles hurt. They released her on Thursday night to a rehab facility. They don't seem to be doing to much there to help her. She gets one hour of rehab a day. Yesterday she said that she wanted to go home.

This morning, she is miserable. Her whole body aches and she can barely move. She doesn't know what to do. Go home or stay in the rehab. I think that she should go home. I have arranged for help for her and my dad.

Is that what happens with this disease? Every day a different problem?

Any thoughts?

Yaka

[bebop]

it is a roller coaster ride for sure hon. is she with a specialist in mds hon?

[yaka]

No, she unfortunately isn't. I think group she goes to has never dealt with this before.

She became ill in Florida and wouldn't come home to NY area to see a specialist. Now she it is too far gone for anyone to fix it. She is 81.

I honestly don't know how long me, my mom and my dad can stand this. I guess as long as we have to. It is truly terrible.

Yaka

[bebop]

there are some good drs in the jacksonville area. maybe at Mayo Clinic there I am not sure but others on here have gone there with good results. praying for your family hon.

[yaka]

Another day in this long saga.

Mom went to rehab on Thursday. Her sores, diagnosed as vasculitis, were getting better. The swelling on her feet had gone down and the pain in her ankles was better. The PT and OT were having her do some small exercises and showing her how to walk with a walker.

Unfortunately, the care in this facility is not the best and two nights she wet herself because no one came to help her get up. That was traumatic for her.

She went to the doctor on Monday and was scheduled for a transfusion yesterday. When I called her room, the nurse told me that after her shower she was shaking and seemed confused. Her blood pressure was down then up. My dad showed up and called the onco. He said to have the ambulance bring her straight to the emergency room.

By the time she got there, she had a fever of 103.6, which the rehab facility did not pick up. She was delusional. They were trying to get her fever down when her heart rate went through the roof. They said she was tacky and they couldn't get it down for about 5 minutes. I thought I was going to loose her then. They got her heart rate down.

Today she has decided that she is done and wants to ask for hospice. I don't want to lose her, but to watch what I saw yesterday was too much.

This is all much too much.

Yaka

[SLB]

My heart goes out to you reading your post Yaka. How awful for your mum & your family. I hope things settle for you all. Hang in there, stay strong. Thinking of you, Sharnie.

[yaka]

After I left the hospital this afternoon, my mom had another episode of rapid heart beat. My dad said it happened about 15 minutes after I left.

They couldn't get her heart rate down. Now I am afraid she will not get to hospice and she will have a stroke.

I don't know what else to write.

Yaka

[bebop]

hon I am sorry this is happening. It sure sounds scarey. is she still in the hospital or back at the rehab place?

[Sally C]

Dear Yaka,
I am so very sorry for what your Mother is going through - and you as well.
The rapid heartbeat could be atrial flutter/fib. It can be controlled with meds as my husband has that. But with so much other going on I know she is tired.
I wish you strength and peace as time goes by.
God Bless,
Sally

[maria&lola]

Thinking of you during this difficult. Praying for strength for you both!

[yaka]

Thank you for your thoughts and prayers. Please keep them coming. I pray for my mom to pass in her sleep.

Today was a rough day. High fever, pain. She is not eating and just barely drinking.

They are trying to keep her fever down. She is on antibiotic, morphine and fentanyl patch. She is also getting medicine to lower her heart rate.

Again, thank you all for your prayers.

Yaka