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Tuesday, February 18, 2014

Spontaneity

spon-ta-ne-i-ty  noun: 
the quality or state of being spontaneous

spon-ta-ne-ous  adj: 
performed or occurring as a result of a sudden inner impulse or inclination and without pre-meditation or external stimulus


And I tell you, it's been a long time, since Bob and I have indulged in a little spontaneity. I was thinking about this, the other morning, while walking Boomer. The weather was just gorgeous. Sunshine. Not a cloud in the sky. A pleasant breeze. Temperatures hovering around 69 degrees. The kind of a day which makes one just want to kick up one's heels, do something a little fun and spontaneous. Especially after weeks of cold snaps and gloomy weather. And oh! I just wanted to go out with Bob and do something!

Before the stroke, we would have done just that. Made a run to the Chinese take-out place, grab some food and have an impromptu picnic in the park by the bay. Or gone for a drive in the country -- stopping at quaint little antique shops along the way...

God, how I miss those days. You don't know, how much you can miss such simple things until they are gone...

These days, there is nothing spontaneous in our life -- everything has to be planned, planned, planned. From the wheelchair transport (24 hours in advance to reserve) to getting Bob ready (at least a 2 hour job) to packing extra diapers, etc., not to mention the physical work of lifting, dressing, etc. for me. 

But the day was so gorgeous -- and I wanted Bob to enjoy it, somehow.

And I knew I needed some things from the corner store, which is six blocks away. And I thought, very spontaneously, maybe I should take him with me! Push him to the corner store, grab a few things and come back! It could be fun!

But then I thought about how much easier it would be to go in the car, alone. I mean, no lifting him into the wheelchair, no pushing a wheelchair six blocks there and six blocks back and god knows what else can go wrong, i.e. bowel movement? right in the middle of it all? yikes

But the day was so beautiful! I wanted him to enjoy it, too. He must get sick of looking at the same four walls every darn day...

So, I asked Bob if he wanted to go with me. First he said, "think about it", and I could tell he wasn't thrilled. I know, it's very painful and difficult for him to get out of that bed. Plus uncomfortable for him in the wheelchair.

Then I told him that it would make me so happy to do something together. Because really, I miss doing things together---so much. And also I told him the weather was beautiful and he really should get out of the house to enjoy it. And finally, he relented and agreed, but I could tell he wasn't thrilled about it. But he would do it "for me".

So! Two hours later (as that is how long it took to get him ready) and then lifted into the wheelchair and then out the door and, wow, pushing him six blocks in the beautiful sunshine and all that was great! All the way there, I kept telling Bob, "Isn't this fun? Isn't the weather beautiful?" and he would reply "Fun!"

Then we got to the store and it was packed, so lots of trying to wheel him around obstacles, and people blocking aisles, but really, I only needed bread, milk and some dog food. So, we went through the store rather quickly with just a shopping basket balanced on Bob's lap.

Then we checked out. This store is a "bag your own" store, so I had to push Bob to the side while I  attempted to pack up our items, and there was sooo many people around, it was hard to find the room to do this and frustrating with the wheelchair, not to mention uncontrolled children running back and forth etc. and as I was finally finishing packing up our bag, I hear Bob suddenly yell, loudly, "WANT TO GO HOME!"

Oh crap. I just cringe.

But when I turned to him, he smiled and said, "Kiddings!" And he laughed.
On our way home, from a spontaneous trip to the corner store.

Then I pushed him home, six blocks.
With a sack of groceries on his lap.
Which made the wheelchair even heavier. Especially on the not-so-even sidewalk and a couple of really steep "handicap" curbs. Plus, his paralyzed (right) foot kept slipping off the foot rest of his chair, so I had to keep stopping, getting down on the ground and shove his foot back into place, else we would have run it over... grrrr...

Then, home again, had shove him up the steep wheelchair ramp, then lift him back into bed, get him boosted up and situated then unpack our bag then basically, I fall over, exhausted. And I thought, maybe that wasn't such a good idea, after all...

So much for "spontaneity".  Not sure, if I want to do it again.

It's really too much work! And what I wouldn't do, to have a "normal" life again.

But, at least, Bob got some sunshine!



Saturday, February 15, 2014

Delay Tactics and Fishing Expeditions

So the Defense has gone to court seeking a "continuance" and the judge granted it and has delayed our court date now until July 7th...

Meanwhile, they have kept me hopping with all sorts of new "demands" and "interrogatories", the latter being lists of questions to be answered and then notarized and sent back, which is not only a huge pain in the butt, but expensive. And a lot of these questions have been answered before...

Among the demands, they want copies of every photo taken of Bob since 2005! Plus they requested my medical records -- yes, me, they want all my medical records since 2005! Which, truth be told, I don't have any--as I don't have health insurance and haven't had it for years, and the last time I saw a doctor (on my own behalf, not on Bob's!) was somewhere around 2003-- BUT what do MY MEDICAL RECORDS got to do with this case??? And they have been requesting more medical records on Bob, from places he's never been to (like a local clinic for the indigent) and from doctors he's never seen, some 150 miles away -- and it really appears, to me, they are on a desperate fishing expedition....

Well, all of this, has certainly been keeping me busy!  Especially the photos, as they want digital copies, and the older ones are the old fashion kind, so they all had to be scanned into a computer. 

I think it was actually worth all of the work, as the photos will benefit us more than them--as the Defense seems to be trying to paint of picture of Bob being very disabled after a small stroke he had in 2003.  And our photos paint a very different picture---like this one, showing Bob on the roof, painting the house in 2006!


Tuesday, February 11, 2014

A Serious Medical Concern or Just a Snapshot in Time?

Yesterday, we went to see Bob's urologist. This is a new urologist as Bob's former urologist has retired. And I'm really not sure if I like this guy...

Anyway, this was just a "six month follow-up" appointment, and the doc comes in and asks how everything is going and I tell him "fine", because truly, everything seems fine and Bob's been peeing like a racehorse.

So we talk for a minute and I mention something about Bob's condom catheter (which was probably a stupid thing to do, because I know this doctor is no fan of condom catheters, it was Bob's former urologist who prescribed those) and at that point, the doc jumps up and suddenly decides he wants to immediately do a sonogram on Bob's kidneys and bladder.

Oh-kay.

So I haul Bob back into some little, dinky, totally wheelchair-unaccessible room to have the sonogram done. Then I haul him back to the other room to wait for the doctor.

The doc comes back all flushed with excitement, and this is (you might remember) the speedy urologist who always talks fast-fast-fast, and he tells me that this is "just terrible" and that Bob has 570 ml of urine in his bladder and he shouldn't have more than 250 ml and this could cause renal failure and that could be fatal!

OK, now I'm a bit freaked out. Which is an understatement. As I'm really freaked out. Then the doc asks Bob if he can urinate? But doesn't give Bob time to answer. And then he tells Bob to empty his bladder, NOW! And he says "take all the time you need" and he leaves the room.

And I'm thinking, this is going to be impossible. As Bob usually cannot pee on command. But I ask Bob if he understood the doctor and when Bob shakes his head "no", I tell him that the doctor wants him to pee. Now. Does he think he can do that? Bob says, "I'll try."

So, I wait a few minutes and, lo and behold, Bob is actually able to pee. I can see around 100 ml in his catheter bag, plus there is more in the tubing, but that's not enough to bring him down to 250 ml in the bladder. So I ask Bob to try some more and he does, but he can't.

Then the nurse comes in and asks if we've had "success" and I tell her we did. Then they bring in a "bladder scanner" and rescan Bob's bladder and this time it reads 370 ml. Which is still too high.

Then the doc comes back and tells us that it's still too high. And he goes on and on about kidney failure and etc. and tells us that we have three options to consider, the first which is some kind of electrical gizmo that he could surgically implant in Bob's buttock that would send electrical pulses to the bladder and that might do the trick or, option #2, is to get a Foley or indwelling permanent catheter, or, last but not least, I can do intermittant catheterizations three times a day until the end of eternity.

Jeepers! None of these options sound good. And I certainly do not want to put Bob through more surgical procedures. And not to mention the co-pays, etc. So, I am sort of sitting there dumbfounded. The doc sees this and says that, well, we don't have to make a decision today. There's time to think about it, if that's what you want to do. Because, really, Bob is in no great danger at this moment, the danger of renal failure is more like five to ten years from now...

So, phew! I think, we'll think about this. And I tell the doc that and then he says, good, I'll see you next month and you can give me your decision then! GA! Then he tells me to "make sure" that Bob "empties his bladder" before the next appointment and we'll do another scan.

So we leave the doctor's office at about 2:30 p.m. and Bob can tell that I'm worried and he grabs my hand and says, "Don't worry. I'm fine."

We get home around 3:00 and at 3:15 p.m., Bob pees. I empty his catheter bag which reads another 100+ ml.

And at 4:30, he pees again. This time 200 ml.

Add that up, and since the 1:30 p.m. scan that read 570 ml in his bladder, Bob has now peed out 500 ml of urine.

Which means, if we had had that doctor's appointment at 4:30 p.m. instead of 1:30 p.m., the bladder scan would have only recorded 70 ml in his bladder --- as the last time I gave him fluids through his peg tube was at 12:00 noon --- and that doctor would not have been concerned at all...

Hmmmm.....

So is this really a serious medical concern? Or just bad timing with that scan?--a snapshot of 1:30 that day, which doesn't mean it's like that always...  And/or, did I give him too much water at noon?

Inquiring minds would like to know!

And truth be told, I have no clue what to do now....

Thoughts? Anyone?





Monday, February 10, 2014

A Special Treat for Bob

Bob & Aunt Mary

Bob & Uncle Dick
Bob rarely gets visitors, so it was a special treat for him on Sunday when his favorite Aunt and Uncle came to visit!

They are here in Florida to escape the weather up north.

I must say, it was really good to see Bob so happy and getting so much loving attention!!!
 And now, it's back to normal for us---and off to the urologist today... (fun, fun)

Monday, February 3, 2014

Grocery Shopping!

Bob's first trip to the grocery store since 2010.
Well, this was a first for both of us. Bob's first trip to a grocery store since his stroke in October 2010. And my first experience taking him to a grocery store!

I have never attempted to do this before because it seemed like it would be a big pain in the you-know-what. I mean, how does one push a wheelchair AND a shopping cart? Not only that, there's the getting Bob ready for a trip, getting him into the wheelchair, scheduling the transportation etc. etc. and all that work just to shop at the grocery store seemed unthinkable. So, normally, Chris comes to sit with Bob once a week, while I run to the grocery store, run errands, etc.

But two weeks ago, when The Green Machine refused to start in the parking lot of the post office when I was out on my weekly errand run, I had to get the car towed over to Bubba's. Fortunately, the grocery store was in walking distance from the post office, so I hiked over to the store, got Bob's prescriptions filled, grabbed a few items and called a taxi to take me home. That ride cost $20.00.  So talk about an expensive day, as the tow truck charged me $65.00. yikes.

Then, when Bubba told me it might take weeks or more to fix The Green Machine, I debated ways to get back to the grocery store for supplies. The taxi was way too expensive, it would cost me $40.00 to get there and back. And a bus, well, how much can one carry onto a bus? And I needed some heavy items, like cat litter... The big grocery store is too far away to walk to -- we have a smaller store in walking distance but they do not stock things like cat litter. So, I decided to do the unthinkable: take Bob with me. That way, we could ride the wheelchair transport and the cost would only be $4.00 each way. 

I still didn't know how I was going to push the wheelchair and a shopping cart at the same time! But I figured, I'd play it by ear and if nothing else, park him in a corner somewhere while I did the shopping.

When we got to the grocery store, I stopped at the Customer Service desk and asked for help. Customer Service paged an employee to "assist a customer shopping". So I pushed Bob and the employee followed us with the cart, all through the store, and the wheelchair van driver helped me load and unload the groceries and it actually all worked out surprisingly well!

As Bob used to always say: Life is an adventure!