hello from the farm. it's been nearly three weeks since our last post. in that time we've set leah up in hospice. unfortunately, it has not been a simple or easy transition. it has now been two weeks of hospice care and i guess we're finally getting settled in (they have business hours mon-fri 9-5 and leah's disease doesn't "wear a watch", so to speak).
we (myself, leah, ken, shirley) have been frustrated because when leah was "sold the idea" of hospice, she really liked that their main assurance was that they could make her comfortable and rid her of her pain.
unfortunately, up until three nights ago, she's been stuck in that hellish "groundhog day". chest pain and vomiting. chest pain and vomiting. chest pain and vomiting. so here is our dear leah, in/on/under hospice and nothing has changed. this has been really hard on her, as she feels it's just another dashed hope. my poor, beautiful girl. she just can't catch a break. all she wants now is to pass on with some dignity.
so she had me to make some calls and demand some action (yes, she's still spunky!). after the dust settled, with a few drugs added, others shifted, and dosages adjusted, we seem to have found an overdue moment of relief. as mentioned above, it's now been three days without vomiting and minimal chest pain. of course the pay off is that leah is hooked to a pump that delivers her a constant supply of morphine directly into her blood (thru her port) and this, plus her fentanyl patch tend to disconnect her with reality. we have been told that most patients' bodies acclimate to the narcotics and come around with a clearer mind and some regained strength. we're hoping this will be the case, though, as we all know, leah is not, nor has she ever been, like "most patients".
so with her pain level currently mild and the vomiting currently ceased leah sleeps her days away. she has a hard time differentiating our presence from her dreams/hallucinations. she has very little strength and is rarely getting out of bed. she still asks for food occasionally (popsicle, mac/cheese, yogurt, mashed potatoes, granola bar), but for the most part, because of her ravaged digestive system, she's done with food. we were told by one of the nurses that her body is eating itself (mostly the muscles) thus her shrinking size and bloody urine. she is probably now under 80 lbs.
as far as visitors, we've been slowly bringing out our families (my family, the iowa rules are arriving tomorrow). maybe by next week we can start scheduling a few of you to stop by. just know that while she likes the thought of visits, she also is still proud and frets about people seeing her in this state. also she has so little energy that just being awake is exhausting. so please be patient and we'll see how she's doing in a few days.
speaking of a few days, leah asked one of the visiting nurses "how long?" and the reply was: "4 minutes without oxygen, 4 days without water, and 4 weeks without food, though most of my patients are much older than you, so with your young body and strong heart, it's hard to say".
on a positive note, leah had a massage yesterday and really enjoyed it, though she slept thru most of it. the masseuse, who is holistic, told leah that she has great energy (of course we've all known that for a real long time, but it's still nice to hear from a total stranger) and liked that there was a cat or two and a dog in bed with her sharing her energy.
lastly, leah asked me to tell all of you that she has no fear. she says we're doing a pretty good job taking care of her and she tells me that i'm the best nurse she's had yet. i try to argue and tell her that if i was as good as she thinks i am she wouldn't be sick. she says i'm being silly and to keep doing what i'm doing, which is being with her.
thank you. there is no doubt that if love cured all, leah would be one of the healthiest girls in the world.
she hopes to take all of this wonderful energy, with her on her journey, as strength. she is not afraid.
much love from greenvale rob
ps after reading this to leah she asked that i add: she hope's you will understand, due to our situation, we are behind on our thank you cards and will get them out eventually.