Grandpa's Vision Loss

Ischemic optic neuropathy (ION) is a rare postoperative complication that can result in partial or complete loss of vision. ION results from an interruption of the blood supply to the optic nerve heads, which are supplied by the short posterior ciliary arteries, branches of the ophthalmic artery.  From AAOS

Basically, what I've gathered from all of the reading is that Grandpa's blind and the odds of this condition improving are in the same category as winning the lottery.  We've heard the same thing from just about every doctor and specialist we have seen.  The last doctor he saw told him his chances were 1 in a million.  As we walked out of that office Grandpa said to me, "Well, who's to say I won't be that one in a million?"  I sat in that office with him and heard the same thing, but obviously we interpreted it a little differently.  He told everyone he ran into during the following weeks that he was the only doctor that gave him any kind of hope.  Even if it is one in a million - it's still a chance.

The treatments that have already been tried have been unsuccessful.  Any treatment that would have given Grandpa the slightest chance of even having some vision return would have had to have been administered immediately; however, he was on a ventilator in the ICU for weeks following the surgery, so  his vision loss wasn't even known until much later.

Hope is an amazing thing.  I think that is what gets Grandpa out of bed everyday.  Well, that in addition to the amazing housekeeper, nurse, maintenance "man", and barista that he has.  The great-grandkids help, too.  And, the weather channel.  Gotta love that weather channel.  It's a good thing we can all keep each other entertained while we wait for a miracle.

Stem Cell Research

Last night on the news there was a brief news story about a stem cell research trial that improved vision in patients with macular degeneration.  It's all Grandpa has been able to talk about since last night because we were told last year that his only hope of getting his vision back would be some sort of stem cell research.  When the news clip was on, I was outside shoveling the driveway so I had to look it up online when I came in.

I spent an hour today looking through current clinical trials and nothing seems to be appropriate for Grandpa, yet.  When (or if) something does open up, he might not even meet the criteria to participate.  He doesn't qualify for any kind of macular degeneration study, but the current research does make us hopeful that there will be something to come along that could fit Grandpa.  One thing that may pose a problem is his age, but the woman on the news last night was in her 70s, which is part of the reason Grandpa has been so excited about this.

We were told to keep our eye on the east coast because that would most likely be where the research would be conducted.  Grandpa is so hopeful and I can only imagine how drastically his life would change if his vision came back.  Last time Gunner was here running around, I was looking at him and couldn't imagine never seeing his face.  Nolan and Madeline have changed so much, too.  We try and tell Grandpa to remember the upsides and focus on the things he still has.  I suppose it is a lot easier said, though.  I haven't been in complete darkness for the last twenty months.

I don't know how to go about getting Grandpa on a waiting list, or if there even is a waiting list.  If there's something out there that could turn this around, I hope I can find it.

How to Drive Your Caregiver Insane

GRANDPA: Hey, we need to call... um... uhhh... oh, what's his name?

It is with this line that I can almost feel a gray hair sprout on top of my head.  See, I know how this is goin to go.  It's going to start with a guessing game trying to figure out who he wants to call.  Then, the frustration of tracking down the phone number.

GRANDPA: [continues]  Ack, YOU KNOW!  I gotta take money out for the taxes...

MOM: Don?

GRANDPA: YEAH!!  That's it!!  Don!

MOM:  Sandy's coming tomorrow.  You can take care of it tomorrow.

[Mom leaves to go back to work.]

[Grandpa turns down the volume on the television.]

GRANDPA:  Look on your computer and see if you can find Don's number.

KIKI: Do you have Don's last name?

GRANDPA:  [A series of deep-in-thought grunting, sighs, and ugghhss come from his direction] UNION!  DON UNION!!!

So, I type in "Don Union" into the magical little Internet search to see what I can come up with.

GRANDPA: Well?

The screen is full of different recommendations, but nothing looks like what I'm supposed to be looking for... whatever the hell it is I am looking for.

KIKI: I need more information than just a name, I think.  Where does he work?

[Another long series of intense thinking brainstorming]

GRANDPA: Fax Sandy!!

[I start "faxing" aunt Sandy an e-mail message.]

GRANDPA: American... something...

KIKI: How about an address?

GRANDPA: It's on South 3rd Avenue.

[So, I finish the e-mail to Aunt Sandy and do a search for businesses on South 3rd Avenue for anything resembling a financial advisor!!]

KIKI: FOUND IT!!!!

[I go over to his chair and dial the phone number for him.  I wanted to just throw the phone out the window when I heard ... <ding><ding><ding> The number you are trying to reach has been disconnected. . .]

GRANDPA: Well, that's not it.

[And, it's back to the drawing board!]

GRANDPA: Did you search for "Don Union"?

KIKI: Yes!  South 3rd Avenue.  Grandpa, why don't we just wait until Aunt Sandy gets back to me.  Or, she is coming over tomorrow.  I'm sure she knows the number...

GRANDPA: WELL... I can't wait until tomorrow!  This needs to be taken care of by the 31st!  Call information...

KIKI: I need the business name to do that...

GRANDPA: Search again for "Don Union N 3rd Avenue" And Union has a J.

[Mental head bash against a pretend wall!  So, I do a search for Don Junion S 3rd Avenue.... and... still, nothing.  BUT, a search result brings up 17th Avenue.]

KIKI: Could they be located on 17th Avenue?

GRANDPA:  [Obviously frustrated with me] NO!

KIKI:  Well, I found a Don Junion on 17th Avenue... [already at the phone dialing the number]

I handed Grandpa the phone and Don was out of the office.

This type of thing is a daily occurrence in the house, so it isn't any wonder that the house is a mess and my graduate school application is still in-progress and not DONE.  I am now sitting at a local coffee shop enjoying a little quiet time.  Every care giver needs a little quiet time to reflect on how the hell I managed to put on 30 pounds since moving in with Grandpa.

Beautiful Day

Grandpa does not like to go out when it is extremely cold, so he hasn't been out of the house in a few days.  Today, Mom called and asked if we wanted to meet her for lunch and Grandpa was thrilled to get out.  We went to Applebee's and Colleen, Zach, and Aunt Sandy also met us there.  I know it is hard for Grandpa to keep up with the conversations, so to say I have retired from interpreting is not entirely accurate.

Mom left to go back to work, Aunt Sandy left to go up to Grandpa's house, and Colleen, Zach, Grandpa and I stayed to chat a while.  It was such a pleasant surprise when Grandpa's sister-in-law, Debra, showed up.  We have not seen her in a long time!  My great-uncle was having surgery in Wausau, so she came to visit while she was waiting.  

Debra is the one who hooked us up with the lovebirds.  Apparently, she has an African Grey that talks.  And talks.  And TALKS.  So, I started thinking. . . I could sell the lovebirds that are mean and bite to buy a meaner bird that is mean, bites, and talks back!  Imagine the fun Grandpa would have with that!  I need to clear this with Grandpa, Mom, and Aunt Sandy first.  

Aunt Sandy was here for the afternoon and I was able to sneak a nap in.  While I was sleeping, she sewed me a makeup bag.  I guess she had an issue with my Ziplock bag I use.  When I woke up, she sent me to the store for the necessities: Onions, Diet Coke, and Three Musketeers!  I won't mention that while I was in line, the bag opened and the onions dropped to the floor because that was embarrassing enough in the store.  A smile and the cracking of a joke made it blow over.  

We had a wonderful dinner and Mom, Elsie, Colleen, and Zach came back up to join us.  Grandpa LOVED the company.  Some days can drag on for him when it's just the TV and me to keep him company.  

Rest up, Grandpa!  Sounds like we have Nolan & Madeline for a sleepover on Saturday!!