Hello all--It's Heidi's second week at home now and I stayed up here in Oceanside past few days. Will return to SD and work tomorrow. There have been several necessary in-home visits recently of hospice nurses, caregiver agencies to interview,etc and she is very fatigued last eve and today...Sadly too today, she had an atrial fibrillation episode (still ongoing) which on top of the leukemia is almost unbearable. She is resting now but was very distressed earlier. If it doesn't clear within an hour or so, we will talk again with Kaiser to see  what might be needed to help her.  It is profoundly enervating and overwhelming for her to have to go through this.

And this is the first a-fib she's had in quite awhile, when they used to be much more frequent, so we are thankful for that

 

Needless to say, she needs quiet and rest and love and ease. Period. So no visitors for at least this entire week is the plan and I thank you for hearing that and respecting it in spite of how much some of you miss her and want to see her and give her your love.

 

Her brother Greg has been here for a couple of weeks or so and goes back home to WI on Friday.He has been a stalwart pillar of brotherly care, pragmatic help and love for Heidi..

 

We then will move into a mode of her care being provided by a team including me, a caregiver agency who seem wonderful, and a couple of friends and maybe a fill-in nursing student for back-up, breaks for me,etc...

 

Your thoughts and prayers and loving-kindnesses are welcomed wholeheartedly and appreciated deeply.

 

warmly,

Peter

Monday, July 23, 2012 - Peter on behalf of Heidi

Hi all--Heidi thankfully came home from the hospital yesterday. She is feeling and doing a little better at home. She is on hospice through Kaiser and right now is not in appreciable pain and is not nearly as nauseous as she had been. Her appetite is pretty good this past 24 hrs which is wonderful to see...And, she still is quite weak and needs someone with her at all times.

 

She is not receiving at this time any chemotherapy by her choice. We were told it would only be palliative and might even cause her additional discomfort or worse. She is receiving energy healing from a woman who treats cancer patients with some success.

 

She, and we, are focussing this whole week on her resting. So at the doctor's and the healer's advice, we're asking that she not be called this week nor visited..

 

Since she needs 24 care now and we don't know if that will change in the forseeable future, I am asking for volunteers to be with her on a rotating schedule...a few hours here and there will help her and us...And we will be hiring some folks I am sure fairly soon..So if you have any ideas about responsible, caring people and/or agencies please let me know. She has an extra bedroom and so someone might be able to stay for free as partial payment for helping her.

 

Your love, prayers, kind thoughts for Heidi are deeply deeply appreciated. More than I can say in fact.

-Peter