I Need a Brand New Pair of Roller Skates

Mom is in 230 and Kaye is in 2103. If I had some roller skates, it might make this more fun.

Kaye has seen such horrible days that I'm always sure I've plumbed the depths of my despair over her. She was just so very pitiful tonight that my chest aches and my air waves seem on the verge of collapse. She is so weak, like she's been hit by a truck. Lots of times her mouth is moving but there is no sound. She was very emotional when I was about to leave. I knelt by the bed and took her hand and said, "Maybe we need to have a little talk with Jesus." I prayed with her, then sang some of her favorite hymns. Same scenario as I had with my good friend Cheri during her last hospital stay. It was the last time I saw her, she died several hours later.
Kaye smiles and cries and talks to folks who I can't see. I smile and cry and talk to this blog in hopes my breathing gets a little easier. It is very hard for me to leave her. I want to climb up in that bed and make some sense of this for her and comfort her and make her feel safe.
If the infection is better and she's been dialysised three times, why is she still psychotic and her eyes look funny and they are still having trouble with her blood pressure?

Mom is pretty pitiful too. She has coughed until she is in awful pain. COPD and Congestive Heart Failure most likely. She's on steriods and is shaky and miserable. Poor soul. I hate it for her too.

Time for Tea My Dollies Three

This weekend, my favorite printing company had a special. I had already had a big picture made of all the gramerlings except Miss Bugg. While it isn't hard to catch her cutest personality on film, it is hard to get her to look at the camera and smile. She likes to look away and say, "Cheese!" with a big fakey smile. In addition, she is a frequent eye batter, so while there may be a big smile, those baby blues are at half mast or gone. Due to the discount, I was determined to get a picture of her to add to my others. Last year actually, Tiff ordered these pillow case dresses for the girls, but today is the first time Bugg has worn it.



I decided that a perfect picture spot for my sweet curly headed girl, was a little hide-a-way under the Scarlet Curls Willow the kids gave and planted for me many Mother's Days ago. I love that little tree. For some readers who've been around awhile, yes, those are the same dollies that appeared in Rae Rae's and others little girl tea party pictures I took a century ago.
When I put Bugg in the swing and give a little push, she always shouts, "A song!" and her current song is about a playmate and her friend with 3 dollies, so it seemed right to put them in the picture. I still recall my mom singing that song to me when I was her age.






"What cha means this isn't quite what you were looking for?"

"Okay, give me a minute and I'll try to do this your way."

" Don't expect me to smile correctly when you are being so silly Gramerly."

" Hi-yah, I'm tired of this."

With her "dee-wish-us" Pappy cake. What a beauty!

In Kaye news, she continues to make slow improvement. It seems she'd like to talk, but is too weak to be able to do so and too weak even to swallow. I am so profoundly sad at this set back.

More of the Same

Kaye is improving ever so slightly. The bacterial infection in the kidney mutated and became resistant to the antibiotic. She will have to be cathed daily regardless of output. In addition, the med she received for her muscle spasms has not yet been metabolized. Lastly, a med she has been on for her stomach causes the muscle dystenia and diminished nuerological function, so they've removed that and in its place one that causes other problems-yee haw! They are also removing the dilantin and I can't remember why.
She is trying to whisper "yes," and "no," and opens her eyes. That's about all.
Someone mentioned to me recently about why I was still at work when she was, for all intent and purposes, comatose in the emergency room. Everytime I get such a call, I want to run straight there. I know though, that the liklihood of another such call, and then another, is more likely than not. I have to work and while it is very anxiety producing to be here when she is there, I don't really feel I have much choice. I also feel horrible when I can't be available more for Pete, but with working full time, it seems hard to do what I already do. It's just hard.
So, some improvement for today.

Mad Woman Hurls Monitor Out Window of Local Hospital

First let me apologize to all hospital staff who might be reading this.
Tuesday is my hospital day anyhow, so when I got the call about Kaye's situation, I headed down there as soon as I could after a meeting at school that was supposed to have been in the morning.
She was still in emergency, with a regular oxygen saturation monitor on her finger, yet again going off every 2 minutes. The nurse comes in with all new hook-ups and I say for the one millionth time, "She has Raynaud's Syndrome (notice that cold dead looking finger your sticking that on?)" " You have to use a pediatric monitor or put an ear one on her forehead."
Nurse Knows Better -" No, I just needed to change these wires, it's working fine now." She leaves, and what to my sensitive ears alarms, the monitor. A new nurse comes on and I repeat my sad tale for the one millionth and one time and still, nothing- Beeeeeeeeeeeeeeeeeeeeeep.
So, I take it off and put it on my finger and that's where it stays until they move her upstairs.
Then, I tell the whole story again.
Honestly, I fear I will fling the thing out a window one of these days.
The infectious disease doc, nephrologist, neurologist, urologist and primary care guy, don't think it is a stroke, but another bad infection complicated by the use of a way wrong med for treating her pain.
Regardless of what it is, she's showing signs of pain and her muscles are spasming in her arms and legs. Otherwise, she is still unresponsive. They aren't giving her any pain medication and I'm feeling the need to just turn off all my feelers. I have muscle spasms and they are horrible. The thought of her just lying there and suffering that way is about more than my mind can stand. She has had dialysis, which always causes her pain to be worse anyway and it didn't help. Her blood pressure is still all over the place.
That weren't able to do the MRI until 4 this afternoon because of her nausea. So we know nothing for sure.
Pete is weary to the bone. I cannot understand how on one hand she can be so frail, and on the other keep living through all of these horrors. It is horrible and that's all.

Busy Weekend

Friday evening I spent with Kaye and she was doing pretty good. She and Pete had a busy week, with allergy testing and going out to eat again a couple of times and of course physical, and speech therapy and dialysis. She ate quite a few different things this week, including eggs-good news.
I guess Pete usually moves her to her recliner, then fixes up her antibiotic at the table, and she hasn't ever seen the process. On Friday, her serum came from the allergy results (I think we're up to 25 or 27 meds now) and Pete needed to figure out the doses, so I started the picc line antibiotic procedure. She was still sitting with me at the table. She knew Pete was working on her allergy shot, and then I got out the syringes with these giant needles you use to inject into the sodium chloride and she about lost it, thinking I was going to stick that in her. Bless her heart. Even still, it is two more pokes for the allergy shots(teeny, tiny needle), another pill and nose spray and she's so weary of all that. I think we're down to 14 days with the picc line meds, so hopefully, she'll get to say so long to that pretty soon.
Sue and I traveled to Florence, Ky to see my aunt and uncle. I took the camera because Uncle Berry was so terribly bad off the last time I was there, I wondered if this would be the last time I ever saw him. He is 95 and Aunt Lois is 89. What a happy surprise to find them well, getting around better than I've seen in a couple of years, and looking forward to their 75th wedding anniversary in December. I just think that is so cool. I love this picture, as it captures the way they still joke and carry on as they have all my life. She can hardly see or hear and he can't hear, but they still cut-up. Aunt Lois has always been just like a grandmother to me. She's the person I inherited my messiness and craftiness from. I wish she lived closer because I would love my grandchildren to know her better.

I returned from Florence in time to meet Rae Rae and Michael and Ceece at a new Mexican place on Frankfort Avenue for a pre-concert dinner. Rae Rae bought me a ticket to see one of my favorite bands, Over the Rhine, for my birthday. It was a yummy dinner, but the best part was the lemon cupcakes Rae brought, with lemon butter cream icing, topped with blueberries. The just photographed one you see is no longer with us. In the words of my precious, precocious grand-girl, " Dee-wish-us!"

Here are Karin and Linford singing beautifully, as usual.

Well, the mystery is solved, Callie Lou is a rooster. I came out Monday morning and opened the back door of the coop and what did I hear, " Errr, Errr,Errr, Errrrrrrrrrrrrr! Handy Man Pappy says it is pretty pitiful, but I informed him that it's very early for crowing and surely the sign of the superior intellect of this rooster. Something in the water here, as my gramerlings suffer from this as well (superior intellect, not crowing).

I was trying to capture in this picture how some of his feathers are becoming show-offey gold, unlike the hen Orpingtons. Being a rooster and all, he wasn't very cooperative.

Everytime I mentioned to anyone last year that we were planning to get chickens, I always got one of two responses: "Ohh, my grandma had chickens." or "Chickens stink!" Well, my chickens don't stink. Yes, they poop all the time, and if you're standing right there you can smell, well, poop, but then it fades away. I actually like cleaning out the coop, and the deep litter method is working well. I scattered Sweet Annie in the pen and hung some up in the coop that makes it smell even better-good times.

Big and Green

Handy Man Pappy found this huge fellow on an apple tree in Pete and Kaye's yard Saturday. It's about three inches long and as big around as my biggest finger. The biggest one we've ever seen. Of course, I had to bring it home for Bugg and Bean, but by Sunday evening, it had already begun a cocoon.

Thankfully, they could still see it and watch it work.
By the time I took it to school on Monday morning it was all brown and papery looking, so I challenged my class to find out what it is. Do you know?

Missy Bugg came to visit me yesterday morning at school and brought me a photo book Ceece had made of all the summer playdate pictures. Ahhh, so sweet. I have so missed seeing them every morning. When I picked them up last evening, they wanted to do everything they're used to doing when we have a whole day. We managed creek, chicken visit, tea party, but that was about all the fun we could pack into an evening.

Welcome to Our World

As far as the infectious disease part goes, Kaye continues to improve. Her improvement is of course aided by the above daily doses of medicines that Pete is in charge of. My brother thought it prudent for someone else to know how to do the antibiotic for her picc line in case Pete was, for some reason, unavailable. So, I received my first lesson in nursing training Friday evening. It takes less time to run the med in than it does to prepare the med, hook it up and unhook it. Four syringes, two vials of antibiotic, drip bag and line and a half a dozen alcohol wipes plus an hour and your all done. She will have to have this for three more weeks.
For the rest, if they aren't liquid, they have to be finely ground, mixed with water and sent in via her feeding tube three times a day. Then, of course, insulin injections multiple times.
Other areas of improvement, she's needed no cath for several days, thank you Lord, and she's grasping more with her right hand. She talks all the time, but most of it is still not clear.
There are still many challenges that leave me exhausted and wondering how in the world Pete is hanging on. She is very emotional, moving between anger and tears. Saturday afternoon she wanted Pete to go to the store and get her some clothes. Over and over she'd say something like, "I need one, 2 and two thirds, no four and that's all." In order to finally solve the problem we ended up having to drag out half her clothes. She insisted a pair of pants fit and pajamas that didn't, so we had to try them on. Welcome to the Keystone Cops. She can't stand up without a solid gripping foundation, so she has to have her tennis shoes on. So, on go the shoes, Pete stands her up, I pull down the pants,Pete sits her down, I take off the shoes, pull off the pants, put on the pants in question, put on the shoes, Pete stands her up, pull up the pants, I hold her up while Pete fastens the pants, sit her down and she sees now for herself if they fit or not, then start again. Now, before this she was freezing and demanded the ac be turned off, so after three pairs of bottoms, we're all sweating, but now she understands that she really doesn't need Pete to go to the store for anything.
Then there's the eating. She thinks she knows what she wants, but can't remember the names. We play twenty questions. The problem is, sometimes even when you say the name, she isn't able to make the association and still says, "No." Needless to say, this is very frustrating for all parties. Then, even when you get it right and she loved it yesterday, she might hate today. She can stand to eat very few things. Mostly she tolerates soup and yogurt. If she says she likes it and it's really good, she'll eat maybe one fourth to one half a cup.
Though much of her pain has been resolved with ridding her of the raging infections, she still has what they now say is diabetic nueropathy. Now, all of her muscles have atrophied, leaving little protection for those nerves. Still, it's nothing like before.
Pete has another situation that is very demanding of him, so they both continue to need your prayers.
If you know someone who is the full time care giver for a brain injured person, be sure and give them a hug and a kind word when you can.
In other family news, Mom was admitted to the hospital last night with pain in her arm and memory loss. We will know more tomorrow.
There are days when I feel my spinning plates are about to come tumbling down.