Family dinner

I made Angel Chicken (my standard crockpot meal) and strawberry yogurt muffins and brought those to the hospital along with plastic odds and ends to eat with/on and a kool-aid type stuff.

My main concern was that there wouldn’t be enough food. I needn’t have worried. Seems like the others aren’t much more interested in eating than I am. It was good to be together and at least act like a family. It wasn’t the same, of course, as sitting around one of the tables. And the uncles left at least three times in the hour I was there to go “warm their noses.” I sat by Grandma and tried to talk to her, and couldn’t say anything normal (in a normal voice).

She has an Oxygen mask now (with a bright blue tube that starts just below the chin), instead of just the nasal cannula, and she still coughs, but can’t spit the junk out. She responds (sometimes) it seems to some things said, or people that speak, but she hasn’t opened her eyes for a long time.

Sarah said Grandma smiled at her, and laughed at a story Uncle Bill told about his son, Adam.

This grief thing is surreal.

When I left Gma’s bedside the first time, I went back to Jay, who pulled me into his lap. I wilted, and whispered, “Don’t be too nice to me, I won’t be able to hold it together.”

“‘Don’t be too nice’?” he whispered back, pretended shock, and almost a rebuke. “I’ll be extra nice.” I just clung to his neck and nodded.

“Yes; that will hold me together.”

The end is nearing.

How near is clarified day by day.

On the off-chance that anyone is still following this story, here is the update through today.

What’s the reverse of exponential? I can’t remember. But Grandma is declining that way. Benjamin is the only family member who hasn’t yet arrived. He comes in tonight.

Is it hugely depressing to have your family gather and share tearful good-byes with you? Mourning you while you are still alive? I think now I’d have a hard time with that; but I’m seeing now that what I think or feel currently may have little bearing on the last days.

Grandma said when she first got sick that Mom shouldn’t worry about her talking about death, or planning a memorial service, because there was nothing to be worried about– she wouldn’t be giving up on life, it was too precious to her.

And now (though I saw the internal war yesterday, through her words) she is tired enough to just be done. She’s ready to end this fight and go Home. Only it’s never up to us; up to her. So we’re just praying for perfect timing.

She’s pretty non-responsive now, and for me that’s the hardest thing. I mentioned earlier the value I felt, being allowed to see how she was thinking (being “let into her mind” was how I put it), and I don’t know how I’ll feel if that doesn’t happen again. Disappointed at least.

I’ve decided (though I haven’t been able to get a hold of Jay yet) that I want to do a family dinner in her room tonight. I want a fun together-time with all of us, and I want (though I suppose I don’t wholeheartedly expect) the familiar atmosphere will elicit a response from her.

How disappointing…

That’s what Grandma said Friday when Mom told her she (Gma) probably has cancer in her blood.

The doctor has sent her bone-marrow samples off to a different lab to see why the cancer didn’t show up in the earlier test, and to confirm this diagnosis. (This is my understanding of things).

Doctor Carroll has said that if anyone wants to see her again they should make travel plans now, because this is a very fast-acting cancer. Mom has been tight-lipped about an actual time-frame, saying diagnosis kills as many people as diseases. She’s told Grandma that if she lives another six years people can come back then, but we want to be ready for anything, so we’re telling folks to come now. Only she doesn’t think it will be six years. She very concerned about the “dying from diagnosis” phynomenon.

Gma’s ready to go on living, and having a (more) finite life-span before her really is disappointing to her. She enjoys life.

I was very disappointed too. I had hoped that something about the hospital environment was oppressing her, holding her back. Because then taking her home would “fix” her. Now we’re told there’s nothing that will, and we are reduce to waiting and watching. And “comfort-measures.”

How do I watch my (2nd) best-friend die? I just do. Figure it out as I go along.

More from last night

Being in the hospital is definitely affecting Gma’s mind (and her state-of-mind), and we’d all like to bring her home, but it would require Ruth (Ewig) and me ramping up our level of commitment to Mom’s scale. My being with her all of every morning, Ruth all of every afternoon, and Mom continuing to pull the remaining shift. Seven days a week.

We could do that for a while, but I’m not sure how long. I was gone two mornings this week and am still trying to recover my house after working on it all day yesterday.

I’m more concerned though about the kids; they have been getting a little edgy (maybe it’s all in my head, maybe not), and I attribute that to a markedly decreased amount of mom-time.

~ ~ ~

Mom told the nurses she wanted to check Gma out for the weekend, and said they laughed at her. That’s just not done in the hospital, apparently.

She can check Gma out anytime she wants, of course, but to do it she has to sign these waivers acknowledging it’s against medical advice and saying it’s on her (Mom’s) head if Gma dies while out of the hospital. Talk about pressure.

The reason this is even an issue (why take her home), other than Gma’s state-of-mind, is that the Dr.s really don’t know how to fix her, so other than having the medical personnel/extra bodies available the hospital isn’t providing stuff she can’t get at home.

But in real-world living those extra bodies count for a lot when things get intense. It’s a very tough decision, so please be praying for wisdom.

And Dr. Carroll’s supposed to know more about the fluid in her abdomen today. I’ll post about that when I know more.

Keep praying

The biggest concern right now is that Gma’s body is not absorbing the extra fluid in her abdomen.

For the last week, ever since the surgery–so more than a week– Gma has had a “drain” in her, to siphon off the fluid/blood that collected in her abdomen after the operation. They took it out Wednesday (Oh she hollered!), b/c the dr. was conserved it had been in to long.

“Any pathway out of the body is also a pathway into the body.” He were conserned about possible infection.

But her body has not been reabsorbing those fluids, and now the heavy question is whether to operate again. Doctor Carroll (Dr. B of the previous) really doesn’t want to go back in, but mom’s concerned that that may be the only option.

Pray for Mom too. She hasn’t slept in her own bed since I can’t remember when. She is stretched in every way right now. I would say “wrung-out” (Picture a washcloth). I feel the stress, and I’m not there nearly as much as she.

Now we really don’t know what’s going on.

One of the Doctors diagnosed something called ITP as the reason for Gma’s low blood-count. The treatment is steroids. As I understand it, they give your system a kick in the pants and try to re-start/reset the body’s levels.

Well, she’s been undergoing that treatment (diagnosed/prescribed by Dr. A) for days, and it’s had no effect. Or not enough. Dr. B spoke to Mom today, and gave her several reasons why he doesn’t think it is ITP, and Mom’s leaning toward his explanation.

So they no longer think it’s ITP, but they don’t know what is going on. Gma’s pretty active for her condition, but still much more tired than “herself.” Until there’s more blood to carry Oxygen and nutrients where they’re supposed to go, I don’t see her “normalizing” much more. That’s what she needs to go home.

So the current prayers are for either Gma’s complete healing (straight from the hand of God) or for the doctors to have the necessary insight to diagnose and treat whatever is really wrong. And for it to be soon, so we can get out of the hospital.

That one’s mine.

I’ve been limited in the amount of time I can spend with her b/c there’s nothing (safe) for two toddlers to do at the hospital while I’m with her, so I always need to find someone else to watch them before I can go.

“In the meantime…” Elisha

(pre-timed again)

Well, with all the stuff about Gma I’ve not had time to post what’s been happing at home. Starting with the youngest (I’ve been with him the most lately):

  • Elisha
    • is smiling, laughing and “talking” now
    • Has an incredible attention span: He spent 15 or 20 minutes watching me rotate a partially-eaten apple in his line of sight at the hospital yesterday. Gma was napping, I was snacking. I assume it was the “dramatic” shift from red to white. The first time it happened he just kicked like crazy (he was lying on his back). I was surprised I had the attention span for it, but since I got to watch him, I had something much more fascinating to watch than an apple core. It’s been years since I sat and studied one of my kids that long…
    • His sleeping is amazing. He does an average of 8-hours/night (I once woke him after 11 because we had to be somewhere), and two or three naps in the day, ranging from 2-6 hours.
    • I am still “actively” putting him to sleep most of the time, holding his arms still and walking or “jiggling” him. That will have to change before long (He was 13 lbs, 4oz. on the hospital scale last Friday), but he’s shown some potential for falling asleep on his own too, when he’s tired, and if I catch the timing right…
    • Other things that have changed since he was new:
      • I already mentioned the sleeping– he would be awake frequently and frantically (not just for growth-spurts).
      • He’s mellowed (Praise God) so he can still stay calm or nurse when the sisters cyclone through.
      • He’s stopped spitting-up (most of the time) so I’m guessing this is when I got the impression the girls didn’t do it; they out-grew it.
      • He will sit in his play chair and enjoy the dangly rattles while I write (like right now).
      • And he nurses great. We were concerned for a while he wasn’t getting enough because of the thrush fiasco, but when we asked the Dr. about it she looked at the growth-chart and said we had nothing to worry about. He was already in the 80th percentile for his age. (My theory about him following Melody’s growth pattern seems to be confirmed). And even how people constantly overestimate his age.
    • He still fits in his “bassinet,” but we’re not sure how much longer.
    • He is a delight, and loves to converse.

(More , on the girls, when I have time later.)

The latest on Gma

Lets see, it’s been a week since I posted here. The list version:

  • Gma had to undergo physical therapy to get walking again, but with hard work and a strong will, she has made great progress. She is now mobile with a walker, and as she continues to grow stronger the walker is expected to be gone as well.
  • The test for Leukemia (a suspected reason for her low blood-count) came back negative (PTL!).
  • In nearly every way (PT, respiratory, post-op) she has been cleared as ready to go home.

The thing keeping her in hospital at this point is the persistently low blood count.

On Sunday the doctor called her “The Miracle of the week.” She was active, lucid, upbeat, and her platelet count (object of the latest treatment) had stopped dropping. Mom hoped this meant we were “at the corner” where Gma would turn and begin improving here too.

It hasn’t been happening that way.

When I went in Monday morning her platelets had dropped again. She had had a rough night; not sleeping well or long together and so started her day still tired. Today, Tuesday, she has a temp of 100.6, platelets are down and the Doc’s ramping up the treatment (increasing the concentration and giving it by IV) hoping that will bring back the improvement we saw earlier.

Oh, and Nana’s arriving tomorrow morning for a two-week stay, and we/I still don’t know where she’ll be staying. She was going to be at Gma’s house, but with this craziness and perpetually expecting her home “soon” Mom and Dad (I agree) felt having extra people around continually during reentry would be hard for her.


(I’m pre-timing to keep Gma’s latest at the top)

Toastmasters came up again this weekend, since it comes up every week. We, Jay and I, have been doing a jugging act with responsibilities. We’ve definitely come up with a current hierarchy of priorities:

  1. Our (core) family of five
  2. Next level of family: Gma Mom and Dad
  3. Everything else

TM definitely falls into the realm of “everything else,” and Jay (and I) could both come up with some pretty convincing reasons to dump it. The interesting thing was that when I prayed about it Sunday and Monday (about the only days TM enters my consciousness during the week), I didn’t feel like I’m supposed to totally drop it. So I went. An hour doing something absolutely separate from the rest of my world (except for EP). It was refreshing in a weird way. I was pretty scattered, but that’s understandable.

When I get babysitting time– from Jay or anybody else– it’s been to go up to the hospital to visit Gma and/or spell mom. It’s continually running, with no stolen “nap-time” moments like I had when I was “continually running” with a new baby. It feels surreal.

Yesterday was the first time Gma’s slept while I was with her. She was exhausted. I think she works harder than she should on her PT, trying to get strong enough to go home. Only, the PTist has said she’s strong enough to go home, so it’s not that issue keeping her in.

It was nice to just sit still and read for an hour (Judy kept the girls that morning) while Gma and Elisha both slept. It was sad too though, feeling stuff back in limbo instead of on a clear “improvement” track.

The way isn’t clear.

I’ve decided that’s what the “we’re not out of the woods yet” phrase means.

And that’s the phrase Mom has applied to Gma’s current condition. Tests continue to report a low blood count, and that is troubling to the doctors, since that should have improved by now.

They will be doing a bone-marrow test/check (whatever the appropriate name is) sometime today, and the results should be available tomorrow.

When I asked, Mom said the doctor or whoever decided against moving her to the “surgical observation floor” (I think it is called) as planned, since there’s no push for ICU rooms. This keeps Gma under more consistent (or at least more frequent) observation.