Saturday, July 31, 2010

Wedding Shower

Had a "semi-sort-of" surprise shower for Amy last night. I started getting cold feet yesterday morning that she wasn't going to be able to get to our house in time or that she'd be too tired to come or that she'd do something in typical Amy fashion... dawdle! So, I told Ron to call her and put a bug in her ear about it. Seems like Rex had had the same thoughts so he put one there, too. We didn't tell the guests that she knew and I didn't let on like "I" knew she knew until everyone left. She had a great time, though. She hadn't had a shower with her first marriage and I wanted something special for her.

I bought the little "bride veil" that you get when girls are having a bachelorette party - it says "I do" in hot pink all around the bottom. I put that on her head as soon as she came in the door.

I got her a koosie that said "I'm the Bride, that's why!"

We played three games - name the cake, how many words can you make from "wedding shower," and how well does the bride know the groom. Everyone had a blast with those, but the best "game" was when we read the problems and solutions that each of the guests had written down for Amy. When they came in, I gave each one a card for the problem and a card for the solution. Once they were all written down, we mixed up the cards and had each person draw one problem and one solution - and then read them out loud. The "advice" for the presented problems was quite amusing.

I think Amy had a very memorable shower. I think her favorite gift was this one:

OK, so I'm kidding. I had her open that one first and said it was for Jamaica. LOL! We all got a good laugh out of that one.

I got her cake from a local bakery called Bagatelle's and they have the best French pastry and food. The cake was a Strawberry Chantilly Cream and was delicious! And, it was beautiful to boot.

All in all, it was a great night. She got some really cute stuff, some a bit naughty and some definitely nice.

Friday, July 30, 2010

59...58...57...56...55 more minutes until I start the next hour

I'm not doing too well taking it one day at a time, so I decided I'd give Kathy's advice a whirl (at least, I think it was Kathy)...

I'm trying to take it one hour at a time. Struggling with that, too.

Seems like all I do these days is cry. I'm getting good at crying in public. Problem is, I can't seem to stop it. I think about what I need to do - I cry; I talk about what I need to do - I cry; I talk about anything - you guessed it, I cry. I'm not happy about that turn of events, either. Ugh! This is not my normal persona or my normal method of operation. What gives with that?

Ron finally got in touch with a friend of his who is a builder by trade and he's supposed to come by the house today or tomorrow to check out the bathroom and see what needs to be done - or what can be done. I think the shower is probably out, but I think I can get some tension rods and hang shower curtains around the tub and with the transfer seat, Ron should be able to bathe sitting there. I need to find a shower attachment that will hook on the faucet - or else, I just need to switch out the faucet to one that will accept a shower attachment. I hope that will work, otherwise I don't know how to get him bathed.

I went up to the rehab center yesterday to work on transfers with him in and out of my car and to see how he does in the bathroom. He did great there. Of course, they have the handicap rails all around the toilet and in the shower. Great. I'm happy as a clam. That's not REAL life. Our bathroom is not set up that way. It's better than a lot of bathrooms because I did take wheelchair use into consideration when we laid it out, but I didn't take amputation into consideration. {sigh} Stupid woman! Ron was telling me all the things "I" needed to do to get the bathroom taken care of and I just started crying (of course, I did - LOL). I said I can't even get people to call me back after I leave detailed messages of what I need.

I know that people don't know what to do or what to offer, but when specific people are asked point blank to do something specific and they don't, I just give up. After Keith moves in this weekend I won't have to worry about a couple of my requests (climbing a ladder to change light bulbs) but there are a couple of other things that I'm not sure even Keith can do. We'll see. He's not a carpenter. He's a computer guy.

Maybe I just expect too much. Probably.

My stepson (Aaron) was over at the house a couple of weeks ago to help Keith move a futon to the basement and I had a little (one-sided) discussion with him about how he's let his dad down and let me down by not following through with things or putting out any effort to check on his dad. I have to say that he took it like a man and didn't offer any excuses - just admitted that he'd been very negligent and he was sorry. He's been up to see Ron at least three times and has mowed my yard for me once and finished up what I started another time. Kudos to him - and I have let him know how much I appreciate his turn-around.

Wednesday, July 28, 2010

Staples NOT out

I was premature in my comment on those. The doctor likes to leave them in a full month, especially with diabetics. He wants to make sure the incision has healed completely.

Ron is really working very hard. The therapist had to tell  him to take it easy today - he was obviously very tired and she told him he could continue his work tomorrow. His left knee, which now has to support his whole body, has given out a couple of times on him. He's concerned that it won't hold up to the strain it's under. We already knew that he was probably going to need surgery on it but we were trying to get his right foot healed up first.

Ron was so tired tonight that I only stayed 45 minutes. He could barely keep his eyes open while he was talking to me. LOL - I gave him a kiss goodnight and said I'd see him tomorrow. He's had a few visitors this week and has enjoyed visiting with everyone. His days are so busy though that by the time he winds down in the evening, he's exhausted.

I get home and by the time I've done a few things (some nights, very few things), the evening is gone and it's bedtime. I don't know where my evenings go. I'm working hard on "letting go" and "letting God" but it's a struggle. I enjoyed going to church on Sunday with Keith and Ron's had at least two visitors from there to see him. That's more than he had from our old church in a whole year. Sad, but true.

I'm trying to find someone to help do some changes in the bathroom to make it safer for him. Called our builder to see if he or one of his contractor guys were available but I haven't heard back. Oh well... I've got a whole week to get it fixed. No biggie, right???? WRONG! LOL - it'll happen when it happens. No sense in worrying over it. I've got bigger fish to think about.

Tuesday, July 27, 2010

Ron update

Ron’s gone to the surgeon today to have the staples removed. He’s already been fitted with a “stump shaping sock” that he’ll wear for the next few weeks until they start working on getting his prosthesis made. He’ll have a temporary one for awhile to make sure that things are going well and that no further surgery is required. I’m hoping that he is as “short” as he’ll go and that he’ll just continue to improve from here. He passed his “brain game” work so doesn’t need to see the speech therapist anymore. I think part of his confusion was stemming from the poison flowing through his body and now that it is gone, he should feel much better overall. That’s my hope, anyway.

Even though he’s doing really well in rehab, it’s still a very structured environment and I’m worried about him coming home and having an empty house with no one there to help him do things. I’m trying to not be stressed about it, but when I lay down at night to sleep, the fears and worries just try to take over. I guess I’m not very good at letting them go even though I’m doing what my sister-in-law suggested (literally giving them to God, putting them in a box, closing the lid and laying it at His feet). I think that I’ve moved on but the panic just doesn’t want to let go. Then, I get all congested – feel like I can’t breathe and the panic just has a deeper and deeper stronghold. It sucks. Our niece suggested a song from Rudolph the Red Nosed Reindeer to Ron last week when he was worried about rehab – Put One Foot in Front of the Other (probably not the correct title) – to help him get through things. I’ve been singing the Rudolph song myself. Hahaha!

Last night was really tough for me. I took my medicine and my head was still very congested. So, I did the nasal wash solution (yucky, but when I did it consistently twice daily, the allergy symptoms were much less) to try and get some relief. It was slow to come so I spent some time in the Word while I waited for everything to kick in and open up the sinuses. By the time I was ready to lie down, I was better but not comfortable. I slept with my hand on my Bible last night just to try and have the peace inside somehow transfer to me. Crazy, isn’t it?

I'll get with the program - it may just take me awhile. I've got almost as much, if not more, to digest and work through than Ron does.

Sunday, July 25, 2010

Ron playing the piano

Ron used to play the piano and keyboard all the time before peripheral neuropathy and Parkinson's robbed him of the majority of his flexibility and movement. He's always played by ear - not reading music. The sheet music on the stand is not what he's playing at all.

On our first (and only) date, he took me to his house to show me the remodeling he was doing and he played the piano for me. If I think about it, I could probably say that listening to his music was the first indication that I was going to love this man for the rest of my life. It soothed my soul back then and it still does today.

No matter how many of the notes he missed, it sounded beautiful to my ears.

Friday, July 23, 2010

Rehab Update

The rehab center where Ron is getting his care is excellent. We have been very, very pleased with the staff and the care he is getting. No one says “let me get you someone” if he asks for assistance – they just do it, no matter what it is he is asking. If he’s in OT or PT or even Speech Therapy and needs to go to the restroom, the therapist takes him. There isn’t anything that is “not my job” in their attitudes. It’s amazing. The compassion for the patients there is remarkable. I’ve seen the inside of a lot of places, but none like this one. Instead of bringing his food tray and dropping it in front of him, the aide makes sure that he can manage either cutting up the food or opening the packets on the tray. I’m only there for one meal a day so it’s nice to know that he’s not left to his own devices the other two meals.

I spent Wednesday morning with him to go through his program and see exactly what he did and how he did it. When I got there, he was in the shower. I assumed that a nurse’s aide was doing the bathing. Nope, it was the occupational therapist. Not only was she doing the “dirty work,” she was also training him on how to take care of some of his hygiene needs himself. Once he was clean and dressed, we headed for the OT room where she had him doing “chair push-ups” to strengthen his arms and worked on an exercise machine that worked not only his arms, but his back muscles as well.

After OT, he had speech therapy. It’s not like he really “needs” speech therapy, but they do brain stimulation exercises designed to help his cognitive skills. They want to assess his short-term memory (which has the most problems) since he has some difficulty with remembering to take medications if I’m not there, and sometimes taking the wrong ones if I am there. He did very well.

Following the speech therapy, he went to physical therapy for an hour. She really put him through the paces! Rolling, leg lifts, knee strengthening, “butt tucks”, and a few other things. Then she had him “walk” in the parallel bars. Twice. He did great. Then he went back to his room to rest before lunch and we saw the amputee psychologist. It was nice to be there to listen to him talk to Ron. He left some literature for Ron to look at and said he’d be back to check on him and if Ron needed anything, the staff could get in touch with him.

Last night, we took him “outside” food. His older sister is here from Tennessee so we got him a Calzone from Old Chicago – which he loves. I was afraid his sugar test 2 hours later would show high glucose level but he only had a 100 blood sugar – and that was with only 19 units of insulin. They’ve drastically reduced his insulin intake. From 60 units with meals, he’s down to 19 units. From 80-100 units of Lantus twice a day, he’s down to 30-40. Wonderful! He also looks and sounds much healthier. I told him that I really thought there was so much infection in the leg that it was just affecting all of his other systems as well. His sister thought he looked 10 years younger.

In fact, the pilot who crashed his plane near Lake Afton on July 9th is a patient there and he was stunned to find out Ron was 62. He said he thought he was his age, which is 48.

Wednesday, July 21, 2010

Found a new blog yesterday...

It's called Ready...Set...Wife and is by two bloggers, one of which who wrote Living Oprah. It's very interesting. The first entry I read was Home is Where the Husband Is. In fact, I found the the new blog from looking at the March 9, 2010 entry from Living Oprah (caught that from a special show on late-night TV). I decided it was a very interesting project, so I posted this comment (LOL - I've fixed my typos though; hate those things and it looks so bad when a writer does it!):

Very interesting project. I could offer lots of advice on being a wife. For better or for worse… We say those words but do we *really* – I mean REALLY – dissect them and take them in as we say them? Do we really know what that might entail? Sure, there’s always the possibility of a spouse losing a job, or wanting a career change at an inopportune time, or even making some poor financial decisions.

But, what if the “for worse” included serious medical issues? Would we be able to stick it out? Would we say “I didn’t sign on for this” and hit the road? My mother taught me the true tenets of that statement and I have worked very hard to live them as well. If you’ll check my blog, you’ll see my documented struggles over the past two years. Health issues go back farther than that (first amputation April 1, 2006) but I didn’t know about “blogging” back then. It might have helped my stress level back in 2000 and forward to be able to have an outlet for when the “for worse” threatened to take over.

In sickness and in health… Sure, we all get colds, sometimes we get pneumonia, and sometimes we get the flu. What about multiple health issues all in one person – stacking the deck against the spouse. Congestive heart disease, chronic kidney disease, pulmonary hypertension, peripheral neuropathy, peripheral vascular disease, vascular dementia, Parkinson’s disease, tardive dyskenisia, high blood pressure, diabetes. All diseases that can strike any one of us at any time. How about ALL of them in ONE person? That is my life with my spouse. In addition to this, he is a double-amputee (1/2 foot on left, below-the-knee on the right), has diabetic retinopathy, and a slew of other problems that could cause someone to seriously reconsider “in sickness and in health”.

All of this is what being a wife entails. Home is where my husband is, but sometimes that is a hospital bed or – as in now – a rehab center as he (hopefully) learns how to transfer and prepare himself for a prosthetic leg.
I received two very nice replies (and a new follower on the blog). One of the replies posed a question back to me..."I am very interested in how you deal with your hubby’s health, as it’s the other side of the coin for me."

For those of you who have followed (or read) very much, you know that my faith is what has gotten me through. You know that I have my down and dark days when the frailties of the human mind take over and all I can see is the despair we are facing. You also know that I try to inject humor wherever I can find it into the situation (arm-pit jewelry, anyone???). Sometimes I get mad, sometimes I get lonely, and sometimes I get selfish. Then, I remember that if the tables were turned, he would do the same - and probably more - for me (he's not put off by "bathroom issues" if you get my drift; in other words, he does toilets!).

I've tried to navigate the health care industry and the insurance industry. You have to be prepared to take on the giants when the health of your loved one is threatened. I've fought for charges that should have been paid to be paid, I've fought for charges to be removed that had already been paid, and I've fought for charges that should have been paid if the entry clerk had used the correct code. You have to have an outlet and for too long, I had only blogging. I had put all of my other interests aside while I devoted my entire day and night to taking care of Ron. 

I discovered that it was not the smartest thing in the world for me to do. It made me more selfish because I resented the fact that I couldn't take time - or thought I couldn't - for myself and my interests. (Thank you bloggy friends for helping me see that! Your support was instrumental in this realization.)

I discovered that I sometimes need to say "No" to others and to Ron. That was a hard one! I've always, always done for Ron and the thought of telling him to do it himself was not pleasant, even if it was for his own good. I wanted him to be able to do as much as he could, even if it pained me to watch him try to do things that would have taken me a fraction of the time to accomplish.

I still cut up his food, tie his shoes (or, "shoe" now), helped with his shoe inserts and his brace, fetched water, pills, insulin, food, etc. etc. etc. if he needed it. But, sometimes you just have to let go.

That is hard. For people without faith, I don't know how they manage. I don't know what I would have done if I hadn't been able to call on God. We have a "love/hate" relationship - not the typical "He loves me/I hate him" kind of thing, but He loves me and understands that I sometimes hate my life.

So, in a nutshell - how do I deal with his health??? Faith, prayer, perseverance.

Tuesday, July 20, 2010

{Sigh} I think I can breathe...

Ron's first day of rehab went very well. He had OT first for an hour, then PT for an hour, and then a break. After lunch, he had PT again for 30 minutes and speech therapy for 30 minutes. He was in speech therapy when I got there this afternoon.

The speech therapy seems to be an odd service, but since he has the vascular dementia they wanted him to have "brain games" and that is done by the speech therapists.

He has a very good outlook and declared to me tonight that he "could do this" which is HUGE! Just two days ago he was crying out of fear and how uncertain things were for him. His stress level has been drastically reduced and, as such, I feel my stress level should also go down.

He is receiving services to keep track of his heart and his kidneys, they've added nighttime oxygen because his saturation level was only about 80%, and there is a chaplain who has also visited with him twice.

He is happy with where he is and knows that although it will be hard work, it will be something that he is willing to do and will give him something to look forward to accomplishing.

Monday, July 19, 2010

to rehab today

Ron was transferred to rehab today and we got the best piece of news we've had in a long time...

NO deductible
NO co-pays

His insurance covers the entire bill (reasonable and customary) and because they're a preferred provider, they can't bill us for the difference.

No wonder they only certify for one week at a time. If today was any indication, one week isn't going to cut it. LOL - he has a long way to go.

The bootstraps I keep picking myself up by are currently up under my armpits; pretty soon, I'm going to start advertising them as "armpit jewelry" instead of bootstraps.

I'd write more, but I think I might actually be able to go to sleep tonight. We can always hope.

Sunday, July 18, 2010


How do I stop the panic
When it threatens to explode?
How do I stop the panic
When it starts to overflow?

I feel the fear rising
It's beginning to take hold
How do I stop the panic
When it threatens my very soul?

I feel it in my body
I feel it taking hold
I cannot breathe, I cannot run
It has taken total control

How do I stop the panic
Before it destroys my soul?

All's Quiet on the Hospital Front

The television system at the hospital is broken so there's no TV going on right now (or for hours today). Ron is sleeping and I'm listening to the sounds of the IV pump running. He's getting two units of blood this afternoon because his hemoglobin is 7.8, which is about 1/2 of what it should be (for a normal person; they'd be pretty happy if his was 11-12). His temperature is down and the nurse said his "foot" looked much better today - not nearly as red as it was even yesterday, so that is very good news indeed.

They are taking his vitals every 15-30 minutes to make sure that he's not having a "transfusion reaction" (never heard of that before) and so far, he seems to be doing just fine. He was up in his chair for quite a while today so he probably needed to sleep.

Me? I'm chillin' with my 'puter, my water jug, and some crackers. Got my A/C fixed this morning; called poor Skippy literally in tears because I said I had to get my "pity party" out of the way before I got to the hospital (I knew Ron would get upset if he saw me upset) but I had to start the conversation with "Ron is OK" so she didn't think the worst. She's such a sweetie! I'm so glad that I found her blog because she has really been a great set of ears for me. She's said "call me anytime" and I've taken her up on that more than once.

Actually, several of my bloggy friends have given me either their private email addresses or their phone numbers, or both. I appreciate that soooo much! It's great to know that I have friends all over the US and other parts of the world praying for us, pulling for us, and just "there" for when I need a shoulder to lean on or an ear to listen to me. Thank you, thank you, thank you!

I am trying to breathe, take one day at a time, and not sweat the small stuff. None of it looks too small right now, though. I put the rails on the toilet in Ron's bathroom so they're "there" when he comes home. We have enough floor space in his bathroom for his power chair to get pretty close to the toilet. I don't know how we'll adapt the shower or the bathtub for him. I have visions of needing to put in one of the walk-in tubs and I know they are extremely expensive - but I'm not going to worry about it until it becomes a reality, or if it becomes a reality.

I was very thankful that our A/C only had a minor problem. I had to pay $150 for the trip charge and the total bill was $334, with $184 as parts and labor. Not too bad for a Sunday repair. Beats $1800-$2000 he quoted me for a compressor replacement. Our windows are those awkward sliders so putting in window units would be cost prohibitive - and I think our homeowners association won't let us put in window units. I'm going to look into a maintenance program to see about preventative maintenance. Fahnestock (which is who did the repair today) has two programs and each one covers something a bit different. One is less than $200 and covers twice yearly cleaning and checking of the system; the other is about $250 and covers that plus the "emergency" trip charge, so today would have been free (except for the parts) if I'd had that in place. I'll have to see if I can add that to my budget.

I would love to be able to post wonderful things, places I've been, and interesting pictures. But - not happening right now. I will later, though. I have lots of cool places. I might start with the Tiger Cruise I did with Amy when she was in the Navy. I flew to Hawaii and floated back to San Diego on her ship - USS Boxer LHD4 - in September 2001. I have some interesting pictures from then. I was on her ship on September 11, 2001.

After all, tomorrow is another day. (Famously said by Scarlett O'Hara in Gone With the Wind.)

Saturday, July 17, 2010

Fever last night

Just a quick update...

Ron had his blood drawn today to check for "nasties" in his system. He blew another vein in his left arm (he looks like a black and purple pin cushion) so they had to go into his right upper arm - after they did an ultrasound to find a vein - to put in a new IV. I look for them to do a port sometime soon. He had a little fever last night. His foot (I say that loosely since it's gone) was still red and swollen today when they did the bandage change.

The waiting is tough. He was tired tonight so I didn't stay too long. I'll go back in the morning and spend most of the day with him.

Promised picture

My sweetie with our sweetie. Isaiah wanted to see his "Crampa" so Amy brought him up to the hospital last night. After we got him situated on Ron's lap they shared Ron's Sprite Zero. That boy loves his Crampa and Ron sure loves that boy.

Friday, July 16, 2010

No transfer until Monday

The plan was to transfer Ron today to Our Lady of Lourdes rehab center. But, his doctor hadn't seen the incision and they'd not taken the bandage down to a smaller one. The social worker came in about noon and said the goal was to transfer him at 1:00 PM, but since the surgeon hadn't been in it would be more like 2:00 PM instead. About 1:15 the resident came in and took the dressing off. It's kind of red around the incision and a bit swollen - and tender to touch.

Since it was seriously infected, the resident wanted a senior resident to take a look before a determination was made to keep him for the weekend or to send him onto the rehab center. The senior resident looked at it, poked around it a bit, and asked if they'd done lab work to check his blood count lately. Noooo - sure hadn't.

So they decided to keep him for the weekend, do more IV antibiotics, and do some blood work to make sure that everything is OK and there's not some new bacteria trying to grow there.

That would be all we need at this stage in the game.


Thursday, July 15, 2010

Too tired to post...

But, I'll get caught up one of these days. Right now, I'm packing a bag to take to the hospital tomorrow in case Ron is transferred to rehab. He has to have at least five days worth of clothes and his own toiletries. He didn't really have five days worth of "in public" things that he could put on by himself so I had to go visit JC Penney tonight. They're having a sale but even at that, their "sale" prices aren't what they used to be. I saved a lot of money but still spent over $100 just on things that he'd be able to manage on his own.

I know I'm not supposed to worry about the financial end of it, but when I'm staring all the co-pays and deductibles in the face - PLUS the fact that insurance only certifies on a weekly basis AND they think they'll send him home in about two weeks AND I'll have to take him back daily for prosthetic training (when it gets in - 4-6 weeks from now) AND it's a long round-trip to make twice a day (to work, back home, to the rehab center, back home, to work, back home) every day AND there's no transportation to Derby unless I can afford to pay $30 each way - payable in advance - it's awfully hard to not worry about the financial end of it.

And, then to worry that he'll be home alone while I'm at work trying to keep my job - well, the whole thing just overwhelms me and I am to the point right now that I don't know how I'm going to cope or even face tomorrow.

And, I had to spend money I wasn't planning on spending (that was being saved for something else).

So, I'm in a big funk tonight. No good company for anyone - not even myself.

Wednesday, July 14, 2010

I am (in a word)...











I'm almost as much worn-out as I am pleased with the outcome. Guess I need to sleep.


Tuesday, July 13, 2010

Ron update

Yesterday was really, really rough on him. And, by having to watch him suffer so much, on me as well. Keith came and stayed at the hospital with me all day and then Stacey, Karen, and Faith came up in the evening for awhile.

They were giving Ron injections of Dilaudid every hour and Lortab 10 mg (2 of them) every 4 hours. He was still 9-10 on the 1-to-10 pain scale. Poor guy - nothing seemed to help. No position made the pain any less. The ICU has strict visiting hours, even for immediate family. 8:00 AM until 6:30 PM, then 8:00 PM until 10:00 PM only. So, I left at 6:30 last night so I could go home and take care of business, check on the dog, try to get some laundry done, and get some rest. Keith stayed until 8:30 (he "hid" behind the door in Ron's room and was very quiet) so he could help Ron with his dinner.

Ron called me this morning to tell me that he'd finally been able to "go" in the urinal. Good thing, or they were going to put in a catheter. Poor nurse, she wasn't prepared for the amount that he'd been storing. Let's just say that she had to change the bed, too. Oops...

They hooked him up with a Dilaudid pump so he can give himself metered doses of medication every 10 minutes. That has helped immensely. He's still in a tremendous amount of pain, but he can come closer to controlling it this way. He's still getting the Lortab every 4 hours, too. The nurses here are PHENOMENAL! I can't praise them enough for the care they're giving Ron and the compassion they show. Wonderful, wonderful, wonderful care. I want to take Cara (the daytime nurse yesterday and today) when he moves to a regular room. She's amazing.

Back to this morning... Said they'd made this bed set up into almost a full sitting position. That is pretty cool. It has a lot of positions and they can move head or legs or both into a multitude of configurations. Slick.

He's had a good appetite today and I think he's on the road to recovery. Praise God from whom all blessings flow! Thank you all for your prayers and well-wishes. I believe in miracles and your faithfulness has helped this miracle take place.

I'll post a picture when he's not quite as miserable looking.

Monday, July 12, 2010

The waiting game

I didn't sleep much last night, but I didn't really expect that I would. I got home about 11:00 and by the time I switched out the laundry, made the bed, had a bite to eat, and did all of the other winding down things, it was about 12:30. I set my alarm for 5:15 and hoped for the best.

{sigh} Awake at 1:30... awake at 3:15... awake at 4:30.  Do you think I could be AWAKE at 5:15 when it really mattered??? Nooooo... not this chick. My alarm went off but I barely moved. I was exhausted and didn't feel good but I knew I had to get up.

The more I tried to "get going" the slower I moved. It finally dawned on me that I was having a low blood sugar, so I had a few blackberries and three prunes (hey - they're sweet... natural sugar). Finally got myself together and out the door. Got 10 minutes down the road and realized I'd forgotten my phone.

{big SIGH} Back home to get it, which cost me 20 minutes - the amount of time it would take me to finish my trip to the hospital. I was torn - I really needed my phone but I wanted to be there before 6:00. Now it was looking like 6:30 was the time. I got here at 6:20 and Ron was already gone to pre-op. I came to the waiting room and there was no volunteer here so I went back up to his floor and asked the nurses if they could find me someone to take me back to pre-op to see him. Back down to surgery waiting... I waited, and waited, and waited... No one came.

Finally, I decided that I had to go get something to eat, take my medication, and get my computer. I'm back in the waiting room and I still don't know anything about when they're actually going to take him to the OR. They haven't called the waiting room (which is standard procedure here - when patient goes into surgery, a nurse calls and says what time surgery is starting).

So, here I sit. I "need" to work but my mind doesn't want to concentrate. My next check will be 32 hours short and that is a very bad thing for us. Very bad... Medical expenses are going to be extremely high and I am a bit concerned about how I'm going to pay for all of the deductibles and the other everyday expenses we have, especially since my next couple of paychecks will be virtually non-existent.

{super big SIGH} These "boot straps" are going to be up around my armpits by the time I'm done pulling myself up by them.

Love you all; thanks for the prayers and well-wishes.

Sunday, July 11, 2010

Knocking at the crossroads...

Surgery has been moved up. Ron's leg got much worse today and he was in severe pain. I put two new fentanyl patches on (75 mcg each) this morning and that didn't help it. He took three Lortab 10 mg pills and that didn't help it. On a scale of 1 - 10, he was a 12 with pain. The man is never over a 5 except when the fentanyl patches begin to wear off and need to be changed.

After an injection of dilaudid, he was still at 8 on the pain scale.

His foot got very swollen today and the redness started streaking up his leg, plus what was only red on his foot is now purplish in color. When he flexes his ankle, the purple color turns yellowish. Not good. Not pretty.

I called the surgeon this afternoon to tell him all the "stuff" that was going on and to ask if he wanted Ron to take the thallium test in the morning or go to the ER today. He said take him to the hospital.

They admitted him. He's on some oxygen because his saturation level was about 80% and they're giving him medication for the nausea. His sugar was 585, which is really high even for him and especially high since he hadn't eaten. Has to be infection driven.

I'm home for a few hours to try and sleep but will be back at the hospital by 6:00 or 6:30 in the morning.

Thanks for the prayers.

What does your handwriting say?

I got this idea from The Smith's - Queen of his castle. It seemed like a good way to pass the time this afternoon while I'm doing household stuff.

Here are the rules:

Write down the following, snap a picture (or scan the document), post it, and tag others.

  1. Name/Blog Name
  2. Right handed, left handed or both
  3. Favorite letters to write
  4. Least favorite letters to write
  5. Write: The quick brown fox jumps over the lazy dog.
  7. Favorite song lyrics
  8. Tag 7 people
  9. Any special note or drawing
Here is mine:

My writing varies from day-to-day - and sometimes, from minute-to-minute. My mother has beautiful printing whereas I have awful printing. I'm not too shabby for a lefty but I sometimes wish I had beautiful handwriting. Typing for 30+ years has pretty much ruined my handwriting. {sigh} Oh well... I can type really fast. Sometimes I think my typing speed has made me write faster so it's less neat.

Saturday, July 10, 2010

Couldn't sleep

So much on my mind that my body just screamed at me to get out of bed. I'm usually not, by choice, an early riser. The older I get, the more I find myself waking early - even on days I don't have to be up early. I haven't used an alarm clock for years and even if I set one now for an extra early wake-up (flying somewhere or Ron to the hospital), I find I'm usually awake before it goes off.

This morning, 4:00 AM called my name and would not let me go back to sleep. I came out into the kitchen and made a cup of hot tea to see if that would soothe away the restlessness. Nope. Didn't work. My head is a bit stuffy and I knew that an anxiety attack would not be far away if I didn't get up and move around. It's amazing what the body will do when the mind refuses to accept or acknowledge things.

I hear Ron in the other room, sleeping and snoring just a bit through his Bi-PAP mask. It amuses me to hear him and the funny noises he makes. I'll miss that while he's in the hospital and in rehab. Maisey and I will have the whole bed to ourselves. She won't know what to do without her "daddy" here during the day. She frequently spends a great deal of the day on his shoulder, especially when she senses that he doesn't feel very good.

My mind is going over things that have been said and done; things that I cannot change even if I wanted to and things that I wouldn't change if I could. Life is full of choices and sometimes some of those choices are better than others. We have to learn from our mistakes - or bumps in the road - and move forward. I try to project a positive outlook in all things that I do. I'm not always successful and sometimes I really would rather just crawl under a rock. If I could. But I don't like dark, confined spaces and I really dislike dirt - so under a rock is probably not a good place for me.

I think a lot about family and how important it is. We didn't get to "pick" our relatives like we picked our friends and sometimes relatives just don't get along. That is sad. When the day is over, and the pieces of your world are falling all around you, who do you turn to for help? If you don't have family you can turn to, you may be out of luck. Some are blessed to have caring friends who are there to lean on, but others do not. Without family, there could be no one. That could be a very sad, sorry state of affairs.

I think a lot about the "what if" factors. Not necessarily about "what if" he doesn't make it through surgery - although I have to admit that we've both thought about it - but just the general "what if" stuff like:
  • what if he doesn't get strong enough to ever walk again
  • what if this is just the beginning of a series of higher amputations
  • what if they try to send him home too soon
  • what if they don't realize his other health conditions could cause problems
  • what if he's not able to care for himself once he comes home
  • what if he's not able to bathe because he can't get into the shower or the bathtub without his lower leg
  • what if he dies
All of those are valid concerns and all of them have potential. None of them are on the positive side of the scale. I've thought of those as well:
  • what if this is the best thing we could have done
  • what if this makes him able to get up and get around more
  • what if we wish we'd have done this sooner
The sun is coming up and I am winding down. Ron will be waking soon and he'll want to turn on the television. Maybe I can stall him for a couple of hours on that and I can take a little nap on the sofa.

Maybe my mind will finally shut down a bit.


Friday, July 9, 2010

Psychology Test

OK - take this test but don't scroll down to see what your answers mean until you answer the question. OK?

Here we go...

1.  You're out walking in the forest and you come upon an animal. What is it?

2. What does the animal do when it sees you?

3. You walk a little farther and find a house. What kind/style of house is it?

4.  Where is it located - in a clearing or still in the midst of the woods?

5.  Does it have a fence?

6.  You look inside a window and what do you see?

7.  You walk around to the back of the house. What do you see in the back yard?

The results:
#1 is your fears (size of the animal is relative to the fears - big or little, as in big like a bear or little like a squirrel) .(Side note - Ron and I did this separately and we both said a squirrel.)
#2 is what your fears do (i.e. - the animal runs away, your fears don't stick around; animal stays and your fears are with you a lot, too). (Side note - Ron and I both said the squirrel was eating his nuts and didn't leave. How strange is that?)
#3 - the style of house correlates to your personality - big house, strong personality; small house, a less intrusive personality. I chose gingerbread cottage which indicates that I'm fragile right now.
#4 - if it's in the forrest or in a clearing means if you can get away from it (the clearing) or if it's always there (the forrest).
#5 - if it has a fence, you're more guarded around others. Without a fence, you're more open.
#6 - this is what is going on now. I said Hansel and Gretel, so since they were getting ready to see the bad witch, it indicates unsettling thoughts. (go figure on that one)
#7 - this is what you see in your future. The type of animal represents either fears or peacefullness. I saw deer grazing, which indicated that I see peaceful time ahead.

Kind of freaky but very interesting. I know that based on your emotional state that your answers to personality tests can change from one time to the next. This little test was pretty accurate in that I have fears that are with me almost constantly but I do see the future is going to get better.

Surgery is scheduled

It is official – if he gets cardiac clearance, below-the-knee amputation surgery will be next Thursday, 7/15.

Monday, 7/12, he will have a thallium stress test to see how his heart is. If he passes, the doctor will schedule the surgery. The plan is that he will be in the hospital for 3-5 days depending on how he does. The first 2-3 three days he’ll have his right leg in a splint to keep it straight so the thigh muscle doesn’t contract and force his knee in a bent position. If that happens, they’ll be unable to straighten it back out well enough for a prosthesis.

While he is in the hospital, they will set up for him to be transferred to a rehab facility. The doctor has said that he’ll stay in rehab for 2-3 weeks, possibly four. About the time he’s ready to be released, they’ll fit him with the artificial leg and have him practice walking with it. By then, he should have learned how to transfer, how to bathe, how to dress, etc. (we hope).

There are a lot of things that can go wrong but without this surgery, he most likely would just not get better and the infection would spread up his leg or get into his bloodstream. He has a rough road ahead of him. I'm not looking forward to traveling this road. Not at all.

But, we do what we've got to do and make the best of it. Right?  Right...

Tuesday, July 6, 2010

Wonderful Independence Day Celebration

Ron was so totally surprised when his nieces' kids started walking into the house Friday night. It was about 10:30 and I kept coming up with excuses why I had the front door unlocked and the porch light on... I went out and took pictures with my phone (so I could send a text message to give directions), then went back out with my camera, etc. My phone takes pretty good pictures for a phone, but it does not recover fast enough to take pictures of fireworks. (After looking at my pictures from Sunday night, I'd say my camera didn't do that good of a job, either. Need to figure out what I did wrong because only one picture turned out very well and that is of Isaiah playing with sparklers.)

This picture is of Ron and all of his kids (except Shaun) and their kids.

Left to right - back row: Amy, Keith, Ron, Stacey, Tim, Shelby, Mariah
Left to right - front row: Zane, Hayden, Aaron, Faith, Isaiah
Shelby, Zane, and Hayden belong to Tim; Faith and Mariah belong to Stacey; Isaiah belongs to Amy.

This is Ron and his boys. Tim is literally holding him up. Aaron, Tim, Keith, and Ron. Too bad Shaun wasn't here. It would have been nice to see all these tall boys towering over their dad. I think Tim is about 6'4", Keith is nearly 6'3", Aaron and Shaun are each about 6'2".

This picture is of Ron and his niece Elana - and her family. Her oldest son was working so wasn't able to make the trip. This is Elana, Ron, (with Maisey), Joey (in front of Ron), Lexie, and Hotchie.

This is Ron with his niece, Dana and her children, Jennifer and James. Dana looks just like Vicki and when she came in, I thought Ron was going to cry.

I should have taken a picture of Amy and Isaiah with Ron but didn't think to do that. But, that's OK - it's not like they are never here. I did manage to get a picture of Amy and Rex.

The weather was so rotten over the weekend that we passed around the laptops for the kids to play games and entertain themselves without having play in the mud outside. My sister said this looks like an Internet cafe. My laptop isn't even out.

Dinner time - we managed to get eight people around the table (added a couple of people after I took this picture). The lady in the blue and white top with her back to us is Ron's cousin, Deanna, who came to dinner. It was so nice to see her. She was very close to Vicki (Elana and Dana's mom) and I figured it would be nice for her to come and see everyone.

Starting in the 12:00 position, we have Karen (Ron's ex-wife), Zane (standing), Mariah, Faith, Deanna, Dana, Elana.

After dinner, Ron was completely worn out. This is him doing what he does best...

Of course, they all insisted I get in on the picture-taking as well. Ron was tickling the back of my neck to get me to smile. I was so hot from running around and pushing my hair back out of my face, that I was surprised I don't have hair standing completely straight up in front.

It was a wonderful day. Even though it was pouring buckets outside, the kids were all getting along, the adults were having a great time reminiscing, the food was awesome (big thanks to my "grill boy" for doing all the outside cooking - THANKS, Keith!), and the company was outstanding. Ron has said over and over again how wonderful the day was and how it was the best day he's had in years. One time he said it was the best day he could remember (he did qualify that and say outside of our own personal time and celebrations together). I wanted the day to be something special and I think we achieved that.

I'm very grateful that Dana and Elana were able to take time out of their busy schedules and make the drive here (Dana from Indiana and Elana from Florida). It was great to have Tim here and his kids. He said that things are changing around his house and that he will be more of a presence in his dad's life. I think he sees that all is not well in that area and he has decided that he doesn't want to miss out. That will be great. I took one picture of Ron in his chair, Tim squatted down next to him talking, and Stacey standing by him talking. As the flash went off, Tim looked up and I said, "It's so I can remember what you look like." We all had a good laugh.

The rain went away long enough for us to enjoy fireworks over at Stacey's house. Ron didn't feel up to going out, which ended up being a good thing because it started raining on us and we would not have gotten Ron and his chair in out of the rain quickly enough. The kids had a great time watching all the displays around. Even though our little city had canceled the display, we still saw a lot of great stuff going on around in Stacey's neighborhood.

All in all, it was a great weekend. Dana had to leave Sunday night but Elana and the kids will be here for a few more days. That is nice; Ron is enjoying his visit.

Friday, July 2, 2010

Thinking back

I don't usually get emotional when I think about my "past" life - i.e., before Ron - but as my co-worker and I were discussing how time flies, the present, the past, etc., I found myself tearing up a bit when I got to the point where we were talking about the time in my life when my children went hungry.

To give a little background (I don't remember if I've ever talked about this before, but oh well... gonna do it again), after my first husband and I got divorced, I lost my job. He had quit his (to get his child support commitment reduced) and never paid any after it was even reduced. I received unemployment insurance (at the time, in MO, it was $105 per week) and I received a small amount of food stamps per month. This went on for March-May and then I was offered a job in June. I hesitated to take it because it was such a cut in pay from my previous job that I was afraid I would be unable to pay my bills. My ex assured me that he had gotten a job and that he was fully prepared to pay child support again. So I reluctantly accepted the job.

His child support bill was $200 per month; he paid $150 during the month of July and then didn't pay anything else. He quit his job and moved back in with his parents, where he had free rent, a car/gas/insurance provided, food and entertainment (they had cable).

I was on my own now with a job that didn't cover my expenses. Although I didn't have many bills, after I paid rent ($180), car insurance ($25), health insurance ($80), life insurance ($25or so), my divorce attorney ($50), babysitter ($200), gas to/from work (don't know what that would have been in 1983), parking (probably $30 or so per month), and utilities (electricity, gas, and telephone; we did not have cable), I had roughly $25 per MONTH to feed the three of us. I went to a food bank but because I made too much money they could only give me canned goods and $15 fresh produce/meat voucher once a month. They knew I wasn't making it (had to do a printout of where my money went) but their hands were legally tied. (I was $25 per month over the income guidelines for the size of my family to receive any public assistance; if I made just $26 less per month, I would have qualified for rent assistance, food stamps, and utility assistance.) Coffee was a quarter and bread was fifty cents; if it was Monday or Tuesday, I didn't put my quarter into the coffee machine because I might need bread on Friday. I had to wear slacks or dresses to work, so I'd start my hose out with dresses and then switch to slacks when I got a run; I'd wear those panty hose under slacks then until they didn't have any life left in them. My co-workers didn't want to include me in any activities because I didn't dress nice enough for them and I never had the money to go out and eat (I worked near Crown Center in Kansas City, MO and it was quite expensive, even then, to eat out).  So, I was pretty lonely. I had no friends to speak of and no money. I existed and that is just about all.

We lived on eggs, canned soup, and bread - sometimes with butter or peanut butter but often just plain. I usually ate one meal every other day. My ex-in-laws had two grandchildren - mine - but they never once offered to lend us a hand. When I would mention something to them, I would invariably get a response along the lines of "we each have to take care of our own" or "we don't want to get involved in your differences." Hello - our "differences" were THEIR grandchildren. They let those kids go to bed hungry while they took care of their own - a grown man who knew that by making the kids suffer, he was making me suffer more and he was willing to do that. I was a long time forgiving those actions. (side note - sometimes I wonder if I truly have forgiven his parents for their actions)

After Ron and I got married Shaun used to hide bread and cheese behind the sofa just in case the food ran out so he wouldn't have to go to bed hungry again. If my babysitter hadn't fed them breakfast and lunch they would have been much worse. Or, maybe I would have because my one meal might have needed to go to them instead. I was doing pretty good talking to her about it until I pictured Shaun running into the room one day saying, "Mommy! Mommy! Can we... oh, never mind. I forgot we can't afford it." The child had just turned 5 years old! He should not have had to worry about whether or not we could afford to do something.

One time, Ron incurred the "wrath" of my mom by saying something along the lines of "it's not like they've ever had to go hungry or anything" when we were having finicky eater issues with both Amy and Shaun. My mom rounded on him so fast his head was spinning and proceeded to lay it all out on the table for him about just how much they had actually done without and gone without while I was single.

But, God took care of us. He sent angels to give me a helping hand every once in awhile. My parents started buying food for us every month (when I'd let them) and my oldest sister even came over one time with sacks and sacks of groceries (I'd never asked her for anything as her husband was not a generous type but she said if they could spend $500 on a wig for his brother, who was going through chemo, she could spend $85 on groceries for me). My aunt sent me $25 one time when I needed exactly that amount for an unexpected expense. My babysitter would hand me a sack lunch every once in awhile, claiming they'd had "extras" the night before and just couldn't bear to throw it out or eat it again.

Even though things were really rough, I was reassured that my kids did turn out OK and that I did a good job with them and for them. It all worked out in the end.

All is not well in the land of Oz

I have been very diligently taking care of the surgery site - washing, soaking, changing the dressing, etc. Ron has been diligent in trying to walk as much as possible to help build up his strength and to maintain the strength he has. When I got home from work yesterday, he said that his heel was hurting - a deeper hurt than he was used to. That in itself is unusual because with the peripheral neuropathy, he has no feeling in that foot and even when they poke and prod at the doctor's office, they don't hurt him. Saying he had "pain" in the heel tipped me off that things were not going well.

When I took off the bandage I did look at it - probably not as closely as I should have but it was late, I was tired, and he didn't feel very good. In hindsight, I don't know what I would have done any differently last night as opposed to this morning, except maybe not sleep worrying about it. When I got up this morning I looked it over really well in the light and knew as soon as I touched the heel that we had trouble - right here in River City!

So, I called to see about getting an appointment with our family physician but she's already started her long weekend. Drats - had to see a fill-in. Nothing personal about the fill-in, but he doesn't know Ron as well as even any of the other three in the office. Figured he was still a professional and better to judge what was going on than I was. When the nurse took off the bandage she said, "Oh my, that looks infected." We knew that but to have someone else concur with us was a relief. The doctor said that at this point, he didn't feel like an antibiotic would be of any benefit (same thing the surgeon said last week). He said that it was obvious that walking on the foot was breaking down the surrounding tissue and because of that, he agreed that the foot was going to have to come off. We gave it our best shot, but some things just play out differently than what you hope for or plan for.

When I told him what the surgeon had said he agreed, saying that because of the breakdown of the tissue, and because of Ron's other health issues (including the lack of good circulation there), that a mid-calf amputation was the best solution and "sooner" better than "later." When we return to the surgeon next Friday we're going to tell him to schedule it.

Ron has a wedding to attend that he doesn't want to miss. Even if I have to check him out of the rehab facility to attend Amy's wedding, he'd rather go feeling good minus half a leg than to not feel good enough at all to attend because he's got infection running through his body.

I keep saying that we're playing the hand that we've been dealt - but I sure with I could change out a few cards.