Monday, March 31, 2008

Where do I start?

Even for a Monday, today has got to be a real doozy. Ron said he woke up about 3:00 am and had to go to the bathroom. His scooter and his wound vac are both plugged in overnight to charge. He didn't call me because he thought he could do it himself. He didn't. Then at 5:00 am he had to go again. He still didn't call me and had more problems. Without making my poor husband seem really pathetic, or giving too much information, let's just say that the floor in the bedroom and in the bathroom needed a serious cleaning.

I got Ron's dressing changed, put a clean white sock on it, helped him re-dress and go back to bed. Got him up at 7:10 to do his IV. Hooked him all up and noticed that his PICC line was sticking out of his arm about 1/2 of an inch and the dressing wasn't attached at all. That didn't look good so I called the nurse. Luckily, I knew to not push it back into his arm (no telling what kind of harm that would do) so I just taped it to his arm and covered it with a stockinet. During the course of the IV, Ron needed to use the restroom again so I disconnected him, flushed with Saline and then followed with Heparin (2.5 ml). When he came back, I flushed with Saline again and restarted the IV.

In the meantime, the nurse returned my call so I explained the problem with the PICC and she said she'd come out this afternoon to take a look. I told her about stopping/re-starting the IV and asked if I needed to flush with Heparin again after the IV ended. She said yes, so I used another 2.5 ml.

His doctor's appt was for 8:45 and it takes at least 30 minutes to get there, so we headed out. We got a few blocks from home and I look down and noticed his white sock has a red foot. I vaguely thought, "I didn't know he had red footed socks" before I realized that he doesn't own anything but WHITE socks and the red was blood. Lots of blood.

I turned around and went back home to get new dressing and a couple of kitchen towels. I called the office and let them know that we would be late and why. I made it in record time (not much traffic today) and they took him right in. Strangely, even though his foot was covered in blood and the wound vac was full of blood, they couldn't tell where he had been bleeding from. They washed his foot really well and no more blood appeared so they redressed it with the wound material.

It took us between 10-15 minutes to get checked back out and for me to go get the car. Before Ron even got into the car I looked down as I was getting ready to help him and the sidewalk was very bloody, even more so than the floorboard of my car had been. I ran back in and told the receptionist that he was bleeding very badly again so they came and got him and took him back into a room.

Once they got the wound vac off of him they still couldn't find where the blood was coming from. The nurse cleaned his foot up again and then redressed it (this dressing is about a 15 minute procedure to make sure there's a good seal). You can read more about how this system works here: http://www.kci1.com/82.asp. This is the company we are renting from. (We got our first statement for 29 days of service. $7666.00. I don't know exactly what insurance will pay but at most, it will be 80%. That leaves the rest for us. Lovely thought, isn't it?)

Once we got home I added a diaper to the dressing. I sure didn't want to try to clean blood out of tan carpet if he started bleeding again.

It's really strange because he's not had any bleeding problems in the past but we've had three things change in the last week.
1. He started on 81 mg aspirin daily
2. They increased the vacuum pressure from 125 to 150 (and I don't know what that measurement means)
3. I gave him 5 ml of Heparin today instead of 2.5

I asked the doctor if any of those things could have caused the bleed and he didn't see how it was possible. For my own peace of mind, I had the nurse change the pressure back to 125. No bleeding.

I don't know but it was certainly a very stressful day.

Saturday, March 29, 2008

2 pounds up

Weight truly does fluctuate every day but it's still a bit stressfull to watch Ron's weight go back up two pounds. If it's more than three in one day or five in a week we have to call the doctor. Tomorrow if he's up any then I need to just go ahead and make the call, even though it will be Sunday. Increasing his Lasix at home is much better than being put back in the hospital.

The cough is better today. He's only had one dose of the cough medicine. I had to give him a couple of extra pain pills today though. He says he's better tonight.

My step-son, Tim, came over today and is working on burying our drain pipes and running the drain out to the edge of the yard. He got one finished and will do another one tomorrow or the next day. We're not sure how we're going to do the front drains since we can't very well take it to the end of the yard in front because of the sidewalk. He's also putting a patio under our deck. Isaiah will be able to have his cars and trucks there and we can actually put a small patio set there. It will be nice to be able to sit there and watch Isaiah in the yard.

We have had people from church bring us dinner the past few nights. Today's dinner was wonderful - roast, cheesey mashed potatoes, broccoli/cauliflower for dinner and a sugar-free cheesecake with sugar-free topping (with fruit). It was wonderful! It was nice to not have to worry about getting dinner today and I could concentrate on catching up on the things I didn't get done this week with Ron in the hospital. Amy doesn't cook and I just haven't had time to cook so it's been a real blessing.

Tomorrow I'm going to try to go to church. I haven't been in a month since I've been taking care of Ron. He said he'd like to try and go but I still think it's too early for him to get out, except for when it's necessary. He's supposed to keep his foot elevated and there's no way to really do that at church. Plus, there's a dinner afterwards and I don't want him to have to spend that time in his scooter. If he's not feeling well in the morning then I'll probably stay home with him again - one more week.

Friday, March 28, 2008

Friday update

Ron was down four pounds this morning. That’s a great improvement over yesterday. He’s not as short of breath today but still has a terrible cough. The home health nurse says his foot looks much better than when she saw it last (she hasn’t seen him for a full week). His fasting sugar this morning was 127, so that was good. He said he had a low blood sugar during the night but he didn’t want to wake me. He totally soaked the bed with sweat so I was stripping the bed and doing laundry this morning. I didn’t have time to throw it in the dryer before I left so I’ll have to do that first thing when I get home.

I fixed Ron two scrambled eggs (no milk, just a little added shredded cheese), two strips of bacon, and two pieces of whole grain toast. He ate both pieces of bacon and a little over half of the remainder. At least I did manage to get some food in him before I left.

I told him to eat the vegetables and fruit I prepared for him for lunch and snacks today. He says he doesn’t have much of an appetite so he’s not too tempted to eat something other than what I said he could eat.

The main thing he’s having problems with is restricting his fluids. He’s on 64 ounces per day. He is supposed to have no more than 32 ounces between 7:00 am and 3:00 pm. The remainder of his fluids has to last until 7:00 am the next day. I know he went over yesterday by 10-12 ounces because he had a Fresca and didn’t subtract that amount from his water bottle. This morning he had six ounces of milk and eight ounces of tea so I left him only two other 16 ounce bottles of water and one bottle with eight ounces. That leaves him a cushion of 10 more ounces after I get home and through the night.

Even though things are rough right now with him, I’m still very thankful that our life isn’t more complicated. I’ve been reading other blogs and I’m amazed at what people are currently going through. My heart goes out to everyone who is affected by the tragedies going on in the lives of others. May God bless them and give them peace.

Thursday, March 27, 2008

The Castle

Even though I've had some other things going on this week that have taken my attention, I couldn't go much longer without posting about my wonderful night out, compliments of Amy. I stayed last Friday night at the Castle Inn in Wichita. It's got wonderful history and was a very relaxing setting for my stressed out body.

The owners had not planned on being open Easter weekend but because they got several requests for rooms they decided to be open Friday night only. Because they were not there we were not served the desserts on Friday night or the breakfast on Saturday morning. We did have very good coffee, though.

I arrived about 5:45 pm (check in is no later than 6:00 pm) and was given a short tour of the castle and then shown to my room. I was told I could take any pictures that I wanted and go into any room if the entry door was open. No problem. I got my camera and started my tour.

Here is the outside of the castle:

That is from the parking lot. The balcony above the right arch is off the room I was in and is shared with the room above the left arch. My room also had a front (private) balcony.

Front of the castle:
You can see my private balcony in the above picture. It's the one on the left of the picture, above the window. It is barely wide enough for a chair but it was still nice to go out on and enjoy the view.

There are so many rooms that I can't possibly put the pictures up of them all. Here is one picture of a sitting area fireplace. According to the literature, this fireplace is 650 years old:
My room was the "Mary, Queen of Scots" room and it was lovely. It also had a fireplace (there are 14 in the castle) and a jacuzzi tub. I stayed in the tub until I was a prune! It has a king sized bed, which was pretty comfortable considering this is a hotel. Each of the guest rooms contains a journal for jotting down thoughts and sentiments. Many of the guests who had written in the journal had stayed there to celebrate an engagement, a wedding, or an anniversary. It was wonderful to read the stories each had taken the time to share.

The castle also has a library where you can borrow movies or books to enjoy in your room. I took "Life with Father" with the intention of watching it but watched HGTV until midnight instead. LOL, that's not much different than any other Friday night.

All in all, it was a wonderful experience and I did come home refreshed and more relaxed than I had been in quite some time. I appreciate Amy's generosity in so many areas and this is just one more example of her selflessness. It was not an inexpensive treat she gave me and I am deeply touched and grateful.

Discharged, but...

I haven't had time to update this for a couple of days so I'll try to cram as much as possible in this post.

This was one hospitalization that I was not getting a "good" feeling from. Usually when Ron is in the hospital I have a calm assurance that everything is going to be fine and he'll come home in better shape than when he went in. I wasn't getting that feeling on Sunday. It wasn't until Monday evening that I started thinking that he was going to be OK.

He had gained so much weight in such a short period of time that I was really concerned. From Sunday to Monday he lost 10 pounds; from Monday to Tuesday he lost six more. He still has about 16 to lose from what he gained in the last month. He is supposed to weigh himself every day and if his weight goes up three pounds in a day or five pounds in a week, we're to call the doctor. We did a baseline weight this morning (I forgot to start it yesterday) and will calculate based upon that. I'm concerned that he's gained a few pounds because our scales usually weigh lighter than doctor or hospital scales and he was four pounds heavier this morning on ours than he was Tuesday on the hospital scales.

Tuesday he looked SO much better - more like his normal self. His color had returned and he was no longer running a temperature. I was pretty happy to see such a positive change. Each of the doctors who came in were pleasantly surprised to see Ron so much improved. He was discharged in the early evening and we got home about 6:30 that night.

Wednesday we had the home health nurse out to see Ron and she changed his wound vac. She said his wound has gotten smaller in diameter and doesn't appear to be as deep. Dr. Heady had said in the hospital that the bone was no longer visible, so that was a good sign. Ron didn't have a temperature yesterday but he was wheezing a bit.

I went to the grocery store and spent two hours reading labels and finding things that were healthy, things that he liked, low calorie, low sodium, and low fat. It was tough. I bought pre-chopped veggies off the salad bar, bought him some sugar free snacks (not bad on sodium content), and bought lean cuts of meat for me to fix. I stayed away from canned veggies and opted for frozen and fresh instead. I picked up some frozen fruits in addition to getting some fresh ones. It was quite a chore to find things that I thought would work.

Today he's back to being short of breath (but not as bad as over the weekend) and he has not had an appetite. He says his insides hurt and maybe the region around his left kidney. He refused any breakfast and I didn't give him insulin (his sugar was 178). I had to go to work today but I left him with a variety of containers of the low sodium, healthy foods I'd worked so hard to pick out.

I called him at 11:00 and he still hadn't eaten but promised he would shortly. I called at 1:00 and he said he'd been napping and would eat. His oldest daughter, Stacey, called him at 3:00 and he still hadn't eaten but she insisted that he get something to eat. I got home at 6:00 this evening and saw where he'd eaten my stir-fry veggies (he'd gotten the containers mixed up - ugh!), had a container of pudding, and a container of sugar free jell-o. That's it. He's on a fluid restriction and he drank more than I'd laid out for him to drink (although he didn't drink an excessive amount over what he was able to have).

As of right now, I'm not sure what our next course of action will be. The home health nurse will be here in the morning and I'm going to discuss my concerns with her and see what she thinks we should do. If his weight is up, I'll have my answer right off the bat. Increased weight means increased fluid retention and that's one of the warning bells.

Until then, I'll be keeping close tabs on Ron tonight.

Sunday, March 23, 2008

Hospital time again

I'd really like to dedicate this blog entry to my nice relaxing evening at Castle Inn, but I got home yesterday to a sick husband and he went downhill throughout the day.

I called our primary care office and talked to the on-call doctor. I explained what the kidney doctor had told me to do if Ron got sick and she had me take him on to the hospital.

Long story, short version - he's been admitted with congestive heart failure. His potassium and creatinin were both good. He's gained nearly 30 pounds in 3-4 weeks and is just puffed up with fluid. His legs are so big they look like they're about to split open. I've never seen Ron with legs. He's a big man, from the waist up. He has no butt and not legs. Except not right now. He was resting his leg against the bed rail last night and when he moved it, he had about a one inch dent in his thigh/calf. It was awful.

When we got to the ER he was so out of breath that everyone who talked to him asked if he was on oxygen at home. They put him on oxygen there. He had blood work, antibiotic IV started, chest x-ray, and a bunch of other stuff. The PA came back and asked if he'd been diagnosed with any heart disease before. He was diagnosed with congestive heart disease and pulmonary hypertension in 99 or 2000 (I think). He does have an enlarged heart but I don't know how much bigger than normal it is. The PA seemed to think that it was really enlarged right now, with lots of fluid around it and his lungs. He may also have pneumonia in his right lower lobe. Not sure because they were having a hard time telling with all the swelling.

I spent the night in the hospital with him because he was having such trouble getting up and he didn't have his electric scooter there with him. He's not supposed to walk on his right foot at all and with all of his other difficulties, it would have been difficult for him to transfer to the toilet by himself. He ended up sleeping all night except for when they were doing vitals and such. I, on the other hand, did not. I tossed and turned on a pull-out sofa and was also awake when they came in, but I stayed awake much longer.

I started coughing (my wonderful nighttime companion) and could not stop. I finally got up at 5:00 am and came home. I showered, changed my clothes, got his C-PAP machine and headed back. I walked back into his room at 7:00 am and he said, "you still here?" I told him that I was on my way back in and that I'd told him when I left. He didn't remember.

The on-call doctor came in this morning and went over some of the things we'd talked about on the phone last night. She said she was ordering the heart specialist, kidney specialist, and infectious disease specialist. The heart doctor was the first to arrive and he remembered Ron vaguely from the last time he saw him, but not enough to remember everything. Ron was scheduled to have a heart cath the last Tuesday of March 2006, three days before his foot was amputated. Since he had a temperature that day, they didn't do the cath and Ron just never went back.

Dr. Francisco is his heart specialist and he's a great doctor. Very nice and very thorough. He said he was going into his office, TODAY, to go over Ron's previous chart to see what had been done and diagnosed in the past. I was impressed that he was going to take part of his Easter Sunday to go review Ron's chart.

The kidney on-call doctor was next. He prescribed Bumex via IV for 24hours to help flush some of the excess water off. The Lasix via IV had done nothing. He said the regular kidney doctor would come see Ron in the morning.

The infection doctor was last and he was looking at all the symptoms - right heel surgery, fever, diarhhea, shortness of breath, month-old PIC line, no appetite, chills, a bit of nausea, swelling, and kidney pain. He ordered Daptomycin IV. The nurse said it's so expensive that Security had to come with the pharmacy delivery person.

I don't know what is going to happen next for the most part. Dr. Francisco has ordered an echocardiogram for tomorrow. I'm supposed to have a heart cath on Tuesday (kind of freaky - the last Tuesday of March, just like Ron's was scheduled two years ago) and I asked Dr. if I needed to cancel it. He said to wait and see what Monday brought. It could go either way.

Either way, I'm taking Monday and Tuesday off.

I'll have to post about the Inn another time.

Thursday, March 20, 2008

"Psycho mama" strikes again!

Amy told me this morning that I not only guessed the hotel correctly, I also guessed the room she reserved correctly. She said that was freaky because she told no one which room she reserved. She had told Ron the hotel but I didn't even ask him.

This one was very easy to guess because she said one of the places nearby to eat was Riverside Cafe. The ONLY hotel close to that cafe that's worth getting a room for (other than business) is the Castle Inn. It was the obvious guess.

I told her I was sorry I had spoiled her surprise and I am still blown away that she's doing this for me. LOL, she said she gave up trying to surprise me long ago. I don't try to figure things out; they just pop into my head.

She said I was psycho. hahahaha!

Tuesday, March 18, 2008

Semi-nervous breakdown

I think Amy thought I'd totally lost it and was having a nervous breakdown yesterday. LOL, I'm not so sure I didn't think so. I have to admit that yesterday was probably the worst day of this whole ordeal. I barely got through it but by the grace of God, and lots of prayers, I made it.

Today I got an email from a local hotel "confirming" my reservation for Friday night. I knew "I" didn't make a hotel reservation for myself and I knew that Ron didn't make a hotel reservation for me (he wouldn't have the foggiest notion how to), so I knew it had to be Amy.

I sent her a note and said I hoped that she had a good time with Isaiah on Friday night at the hotel. She said that I was going. I certainly don't see how since we have IVs to deal with (maybe, maybe not by then). She said I had plenty of time to teach her how to do it (but she didn't watch tonight). I said I didn't know what I would do with myself with no interruptions. She said I should take some entertainment.

A few minutes later I got a cancellation notice from the hotel. I figured she listened to me and decided that I wasn't going. Sounds good to me.

She sent me a note and asked if I got the cancellation; I said yes, she said change of plans. I was going to a different hotel. I asked where; she wouldn't say but said I had to be there by 6:00 PM. I "have" to be the one who goes because they don't let little kids in there.

She never would tell me where I'm supposed to go but I have a guess. She finally told me about some near-by places to eat and I looked on a map to see what hotels are close. I've been accused of being psychic because I figure stuff out easily and I've known things she's planned for me before they happen - plus I guessed a gift just by looking at the wrapped box.

So she said, "well psycho mama, where are you going?" I told her The Castle at Riverside. I'm not sure that is the location but it fits the bill. It's near the eateries she mentioned, there are stairs (she asked me how I felt about stairs), and there are in-room jacuzzi tubs. I think the rooms are pretty expensive and even though she wants to treat me, I'm not sure she'd spring for this much money. But, she did tell me it was 29 minutes from home to this hotel. I did a mapquest and came up with 26 minutes so I'm at least close to the vicinity of this hotel.

She said she'd email me the driving directions at 5:00 on Friday. I'm supposed to take my overnight bag with me to work Friday since I won't have time to get home and back there before work.

We shall see what transpires...

Ah, the simple things in life...

Running water...
Hot running water for bathing...
Indoor plumbing...
Indoor plumbing that works!

We got a new toilet today and it works so much better than the other one. The builder called me early this morning and said he had two plumbers on their way to get a new toilet and install it. They were done before noon.

Bless them! I'm a happy camper now.

Monday, March 17, 2008

Gotta love 'em...

I came home from work early today because I was just feeling totally frazzled. Walked into the master bedroom to check on Ron as I noticed he wasn't in his recliner. He was trying to unplug the toilet. It's not flushing correctly and we've had issues with it and the amount of toilet paper he has to use (isn't this a lovely topic?).

So, I come home because I don't think I can handle even ONE more thing and get to find out that I have to un-clog the toilet. I just can't. I went into the living room and laid down on the sofa. I did forget about the clog for a while.

Ron's hooked up to his IV and asks, "When do you think we should attack the toilet?" I have to remind him that he's hooked up to the IV and "he" can't do anything. "We" means "me" and I'm just not in the mood. I do have to take care of it before bedtime because that's the only bathroom he can get in and out of.

Ugh! Where are the men of this family?????

Update:
I could not unclog it. It flushes, just v-e-r-y-s-l-o-w-l-y. So, I called the builder and in between sobs asked him if he could send the plumber over who installed it. I think he got the definite correct impression that I was absolutely beyond what I could cope with. He asked if we wanted to go with a higher-grade toilet. Well, that would have been nice while we were BUILDING the house and Ron told him to get a BETTER toilet with a power flush. So now we're in a position to not be able to buy the better toilet (several hundred dollars).

Ain't life just a bowl of cherries? Somehow, the pits got mixed up a lot with this bowl.

Giving my mom kudos

I sent my siblings this email today. It might make some of them angry, and that wasn't my point. I wanted them to just maybe stop and think about life and how rapidly things could change for them.
[quote]
Man, I don’t think we all gave Mom enough credit for her strength and resilience during all the years that Dad was sick and in and out of the hospital. Sure, we called during times of acute illness but did we do enough after the acute phase was over? Living farther away I know I did the least and realized the least. Honestly, I’m not saying that we neglected her but I think we didn’t realize how tough things might have been for her.

Wiping up bodily fluids (and solids) is no fun when they’re your own – and really not any fun when they belong to another adult no matter how much you love that adult. Cleaning walls, clothes, floors, and toilets is fine when you’re dealing with everyday normal stuff. But, add an accident into the mix and you’ve got another story entirely. Dumping urinals and emesis basins are not things we signed up for when we thought about ‘for better or worse” but sometimes that’s what life hands you. Just getting comfortable and then having to get back up to take care of a need is very draining over time.

Only having a small taste of what her life was like all those years sure gives me an increased amount of respect for all that she did.

Even having someone come over and sit with Ron so I can get out would be nice. Amy doesn’t count because she’s there nearly as much as I am so she does share in the “sitting” part of it. She helps him in and out of the chair, makes sure his tubing isn’t caught on stuff, and brings him things. But, she can’t give an IV, can’t change his dressing if he’s sprung a leak, and surely isn’t going to “clean” up after him. She’s not having sleepless nights making sure his foot isn’t touching the bed, help him back in the bed after he’s been to the toilet, or getting him back into a comfortable sleeping position.

I’m sure that Mom did so much more for Dad than I’m doing for Ron – and she was older when she did it. The thing that probably helped her the most was that she wasn’t trying to work a full-time job while she was doing it. If I could do something special for her now, I’d do it but I don’t even know what it would be.

For me, I'm damned if I do and damned if I don't. Can't stay home because of PTO (I'm down to 7 days left), can't take excessive FML time because of the no pay involved. I really hope the IVs are done this week and that will help some. We go back to the foot doctor on Wednesday afternoon. The kidney doctor said on Friday to watch him and see if he starts having the fatigue, nausea, and confusion again. That's our clue that his kidneys are failing and to just go to the hospital. So, now I'm trying to judge every action and reaction to see if he's in a normal state.

I’m being a bit melancholy today and a bit emotional so please bear with me. I’m struggling with the financial aspect of a long-term illness and the emotional weight that something like this puts on someone’s shoulders. I’m not asking for anything and I’m definitely not looking for any hand-outs. But, just realizing how hard life sometimes is can make a person re-think choices and decisions that have been made over time.
[endquote]

Thursday, March 13, 2008

Personal Testimony

I stumbled across a site recently that got me to thinking. I don’t believe I’ve ever shared my full testimony with people.

I was baptized when I was about nine. I don’t remember a lot about it except that my older sister, Kathy, pushed me out into the aisle one Sunday morning and said I was old enough to go to the front and get baptized.

I remember the preacher coming and visiting my mom. I remember sitting on the footstool and professing to know what I was doing. I remember wearing a white robe and being dunked.

I don’t remember my life, actions, or thoughts changing so I doubt that I’d been truly saved at that young age.

Fast forward to age 14. I don’t remember a lot about church from baptism to my teenage years. We moved when I was in the third grade and although we lived at our new house when I was baptized, we still attended the old church. We must have lost our ride to the old church since I don’t remember my parents taking us.

I do remember bits and pieces of going to Sunday school at the new church (within walking distance) and I remember some of my teachers with fondness. Mrs. Geraldine Chester was probably my favorite. Think “Aunt Bea” from The Andy Griffith Show and that’s who she reminds me of. Not the actions (because Mrs. Chester never whined) but in looks and dress – and who could forget those shoes! Mrs. Chester played the piano for the church and she could make those keys just sing. She was a wonderful pianist and an amazing woman of faith.

I was one of those kids who needed extra but because of the size of my family I didn’t get noticed too much (except when I was doing something wrong or my father perceived that I was doing something wrong). I didn’t really excel at anything and everything I liked to do, Kathy had already done – and done it better. I stayed out of trouble so I didn’t really get too much negative attention either. I just kind of existed. I was sure that my existence didn’t really matter to anyone so I only did enough to make myself feel good. I had several things happen that weren’t “bad” but from a child’s standpoint, they reinforced my thoughts that I didn’t really matter. I loved to read, so I spent all my free time immersed in books and daydreaming about living a different life where I was important to others. I loved to sing but I’d only sing if I thought people weren’t listening because it had been implied that my singing was not good enough to care about. I got good enough grades to stay out of trouble with my parents but didn’t really go the extra mile to get REALLY good grades because it wouldn’t make any difference in my life anyway. I knew that I’d never be allowed to go away to college so why bother trying to earn scholarships to places I’d never see.

By the time I was 14, I was very involved with our church youth group. We had the older teens, which included Kathy, Ruby Richey, Rhonda Moore, Jimmy Mattingly, the oldest Sanders boy (who had a crush on Kathy), Brenda Moore, and a slew of others. I was part of the younger teen crowd, along with Leida Richey, Ray Brown, Debbie Webb, Herb Mattingly, Robert Sanders, Pauline Sanders, Ray Moore, and several others who weren’t quite as regular in attending. For a small community and small church, we had a large group of teenagers. Some of the names and faces come to my memory in bits and pieces.

Granny Page was Ruby and Leida’s grandma. She was everyone’s adopted grandma. You didn’t address her as “Mrs. Page” as she’d correct you (“Mrs. Page” was her mother-in-law is what she frequently said). I had never met anyone before her or since her who loved as unconditionally as she did.

Granny made me feel special, just for me. I wasn’t someone’s older sister or someone else’s younger sister. I was someone to notice in my own right. She said that I mattered to her and that I mattered to God. She said that Jesus had died for ME and if I’d been the only person on earth who had believed in Him that He still would have done it. I was flabbergasted. I’d never felt that kind of love or understood the enormity of love that strong before.

I remember so clearly the Sunday I went forward at age 14, just as clearly as if it happened yesterday instead of 37 years ago. Granny came and enveloped me in her loving embrace and just hugged and hugged on me. She said that I was indeed a child of God and that He had great plans for me, plans that I couldn’t even begin to imagine. There were no earth-shattering confessions or prophesying over me but plain and simple, straightforward talk from a plain speaking woman of faith.

I can’t say that I never strayed from those words of wisdom and I haven’t always been in God’s will. But, I do know that when I am walking in His steps instead of my own that things are better. I have things in my past that I’m not proud of and things I’ve had to ask members of my family to forgive me for. There are other things best left unsaid and known only to God and me. I still have to ask for God’s forgiveness every day because in my human self I still fail to live a life that is free from sin. But, the main difference between me and someone who is not saved is that I know beyond a shadow of a doubt that my sins and transgressions are forgiven, as if they never happened. When it comes my time to stand before the Throne on judgment day, I’ll be judged accordingly but those things that have been already forgiven will have been wiped clean and not brought up.

Do you know Jesus as your personal savior? If not, you can become a redeemed child of God by simply asking Jesus into your heart, confessing your sins, and acknowledging that He is the only begotten Son of God. He was sent to the earth to live and die for our sins so that we may have everlasting life. He was buried in a borrowed tomb and rose again on the third day and now sits at the right hand of God.

If you don’t know the Bible or own one, you can go to www.bible.com or www.biblegateway.com and look up passages.

John 3:16-18 says this:
16For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.
17For God sent not his Son into the world to condemn the world; but that the world through him might be saved.
18He that believeth on him is not condemned: but he that believeth not is condemned already, because he hath not believed in the name of the only begotten Son of God.

I know I have more to say but this post is already very long. I’ll leave it for now and maybe revisit in a future post.

New foot update - 3/12/08 appointment

The doctor’s visit went well yesterday. I didn’t get a picture of the foot but I can tell it’s improving. The amount of silver sponge bandage they put in the hole was smaller than last week’s. The doctor’s notes from the prior week were on the table so I read them. The notes said that Ron had a long way to go with this but it was improving. It’s good to know that there has been improvement (the bone of the foot is no longer showing) but tough for Ron to hear that he had a long way to go. Oh well, at least we do have hope that he’s got a positive outcome in his future.

The nurses who re-dressed his foot were not as good as the one from last week. They had a hard time getting a good seal and the vacuum wasn’t “sucking” at all. There was no compression to the sponge. I was watching them very closely because if the silver sponge touches good skin, it causes the good skin to break down. I wanted to make sure they had tape under the sponge as well as on top of it. The procedure goes like this:
1. Measure how big the actual hole is and cut a piece of sponge to fill it.
2. Tape over the whole thing so that it’s sealed.
3. Poke a hole (good sized) in the tape covered sponge to attach to the long “feeder” sponge (more on that later).
4. Tape up the leg in an area wider than the long feeder sponge.
5. Attach the feeder sponge to the hole and tape securely.
6. Tape the whole area again, covering the feeder sponge and the foot sponge.
7. Attach a larger feeder sponge the diameter of the suction tubing and tape down.
8. Poke a hole in the new round feeder sponge.
9. Attach the suction tubing.
10. Tape the whole thing down again.
11. Hook up the vacuum pump and see if the sponge starts compressing. If not, there’s an air leak somewhere that has to be found.

They had three air leaks in the thing and it took the physician’s assistant to find them.

The IV schedule isn’t hard but this morning the solution didn’t seem to want to infuse properly. I don’t know what I did wrong but it finally was done after 45 minutes. It’s supposed to infuse over 30 minute period but it kept shutting the pump off and I’d have to reset it. I was a bit late to work but oh well…

Monday, March 10, 2008

Heart Cath

Most routine health tests don't bother me. I have anxiety disorder and I'm prone to panic attacks but I can get through most things with a bit of sedation.

The thought of a heart cath sends chills of fear up my spine and I've had chest pains today because, I'm sure, of the thought of having this done.

The cardiologist today said my Thallium treadmill didn't look too bad but with the history of heart disease in my family, plus high cholesterol, high blood pressure (just diagnosed less than 30 days ago with this), diabetes, Mitral Valve Prolapse, overweight (not tons, but enough to make a difference), and my age (isn't "over 50" just grand?) he feels that a heart cath is in order.

My paternal grandfather dropped dead from his first heart attack when he was 56 or 57. My father had his first (of many) heart attacks at age 56. He'd had a quadruple bypass the month before or his first would also have been his last. He passed away three years ago at the age of 74 and had suffered for years with various heart ailments. My maternal grandmother and my dad's only sibling both died when they were 65 of congestive heart disease.

Several of my siblings also have risk factors for heart disease; three of us are on blood pressure medication, three of us are diabetic, three of us are overweight, four or five of us have high lipids, etc. And, not the same "three of us" necessarily have all the same risk factors.

I don't relish the thought of having this procedure but I also don't relish having my life cut short by something that has been a predominant cause of death in my family. I'm willing to go through with the procedure to make sure I can get a clean bill of health afterwards.

I'm putting everything in God's hands. Since Ron can't drive, and I don't want him to have to sit so long in his scooter, he'll stay home. Keith will take me to the hospital and Amy will pick me up when they say I can go home. The chicken part of me wishes someone could stay with me but if I can read a magazine while I'm waiting I'll be fine. I did talk the doctor into giving me a strong sedative to counter the anxiety attacks. He said to just remind him.

Trust me, I won't forget to do so.

Friday, March 7, 2008

Blood pressure woes

The kidney specialist changed most of Ron's medication while he was in the hospital. His blood pressure medication (Vasotec 20 mg, AM and PM) had been keeping his blood pressure in a normal range. I don't know why the doctor changed it but maybe it had something to do with the effects on the kidneys. The last time Ron was in kidney failure (Oct, 2006) he was on Coreg and the kidney doctor yanked him off of that very rapidly. Maybe there's some concern about the Vasotec, too.

Now he's on Norvasc 5 mg in the morning. That's not keeping his blood pressure down. The lower number is still in the 68 - 85 range so the on-call doctor (our doctor's office was closed by the time I could get them called) said that unless it goes over 110 then to just check with the kidney doctor on Monday. Ron's appointment for his kidneys isn't until the 14th.

Ron's also has a lot of shortness of breath and I'm more concerned now that he may be having an episode of CHF. If he's not better by the morning then I'll be calling the doctor's office and seeing if there is someone who can see him tomorrow. Although our doctor isn't on call this weekend, someone will be in the office and since it's "immediate care" then we can take him in.

Latest Updates

IV News

The on-call nurse came last night and watched me do the entire IV from start to finish. I was a bit confused in a couple of places but I figured it out. I think I made it a bit harder to prime the line; I may do it on the kitchen counter tonight so I can have the air and beginning drops flow into the sink instead of trying to hold it over a trash can and keep everything sterile.

I’ve been doing the evening IV but I haven’t had to prime the line as the morning nurse has done that. Since we’re cutting back on our home health visits, I will be switching out the tubing every night and having to prime the line.

This batch of IV solution is in a different bag and it seemed to flow much better last night. I didn’t have to re-set the volume halfway through the cycle.

We’ve switched to me doing both daily IV doses on the weekend, plus Tuesday, Wednesday, and Thursday, and then the evening dose on Monday and Friday. Our insurance will only cover so many home health visits per year and we have to save as many as we can for the wound vac changes. The nurse will be coming on Monday morning and Friday morning to change the wound vac and do the IV. Wednesday is when we’ve been trying to get all of the foot appointments so it can be changed at the doctor’s office. If not, we’ll have to have an additional visit by the home health nurse to get it changed.

Wound vac:

We got a letter from the wound vac company. The daily charge is $134, plus the cost of supplies. The estimate is that patients will go through two cases of canisters ($245 each) and three cases of the dressings ($350 each) every month. Our insurance will pay 80% of "reasonable and customary" and we're responsible for the rest - no write-off. I figure the cost is around $5700 per month. No real clue what our portion will be but I expect the total bill to run into the thousands. I know they take payments. LOL! I just finished paying them off in September from his 2006 surgery. (On a side-note: we got the hospital bill statement yesterday and it’s actually not as high as I thought it would be. It’s “only” $39,769.96.)

Foot:

There is a tunnel that runs under the skin and the doctor left the skin intact so it would fill in with the new tissue. The plan is that the wound vac will stimulate growth of new tissue (scar tissue). The doctor said Wednesday that he noticed the bone is no longer visible so there is some change. Ron's blood sugars are very good so that should help healing. Although the 'tuh' looks better, the doctor says it's too early to stop the antibiotics. His foot smelled horrible, almost like something had died. He said he'd been smelling himself for a couple of days but because he can't just jump in the shower without me going through a convoluted setup to get him in and keep the equipment out, he actually thought he just needed a shower. Ron cleaned up as best he could while I was at work, but still thought the funk was coming from body odor he couldn't get to with just a wash cloth. It wasn't until we got into the doctor's office and they unwrapped his foot that we realized the smell was coming from there. I’ve smelled skunks that didn’t stink this bad. Dr. Heady wasn't concerned at all and said that sometimes wound vac areas would develop a funky smell. He cleaned it up, cut off some more dead tissue, and made the wound bleed a lot.

Upcoming appointments:

Monday, 3/10 – I have a cardiologist consult on Monday (3/10) at 9:40 AM. I have to figure a way to be to work at 8:00 and leaving at 9:00 – and then returning after the appointment. I’ll have to stay as late as I can on Monday but I have to do things at home, too. There was a little abnormality in my thallium treadmill so my doctor wants me to see the cardiologist. Oh joy, just what I have time for.

Wednesday, 3/12 – Ron back to the foot specialist. His appointment is for 3:30 so I’ll work until 2:00. That gets me home in time to help him get dressed and out the door by 2:45 as it takes us a full 45 minutes to get there. With the IV schedule, I won’t be able to go into work any earlier.

Friday, 3/14 – Ron to the kidney specialist. That appointment is at 10:20 up by the hospital. If the Friday wound vac gets changed in time, I can work 7:30 or so until 9:00, leave and take him in and then go back after he’s finished. I’ll also stay as late as I can that night.

Since the IVs are every 12 hours I have to kind of juggle things around that allow enough time between his treatments. Just looking at this schedule has me exhausted. Anyone want to come and live my life for a while? Anyone want to see yesterday’s picture? LOL, it’s truly lovely.

Thursday, March 6, 2008

Shopping at Kohl's

Ron needed some jogging pants that zipped up the leg so it would be easy to get on and off over the bulky wound vac. He decided that me looking at Kohl’s would be the best place to start. So after I picked up Isaiah last night I left the two of them in the car and went inside to see what I could find. Nike and Addidas had theirs buy one pair at regular price ($35), get the 2nd free. Tek (or something like that) had theirs 50% off; Regular $25.00 Sale $12.50 each. I found three pair in his size so I grabbed them up.

I took them to the cash register. Cashier rings up first pair of pants. I notice the screen says “buy one; get one free” and the price of $25.00. Now this would be OK for the first two as I’d end up paying $12.50 each but the third pair I’d pay the full $25.00 so I told the cashier they were 50% off, not buy one, get one free. Here’s how the conversation went from there:

Cashier: They’re ringing up Buy One, Get One Free.
Me: I realize what they’re ringing up, but the sign says they’re 50% off, making them $12.50 each. The buy one, get one free would work for the first two pair but not for the last one.
Cashier: Do you want to go get a 4th pair since they’re buy one, get one free?
Me: No, they only had three different colors in the size I needed and the sign says they’re 50% off.
Cashier: What sign?
Me: The one above the pants. I’ll show you. (We both go over to the pants and I show her the 50% off sign)
(Back to the register)
Cashier: I can’t change what is on the screen but I can take 50% off the other pants. (At this point she takes a calculator and figures out what 50% of $25.00 would be.)
Me: That will be fine.
(Total shows on the screen $37.50 plus tax, which is what it should be.)
Cashier: Does that look right?
Me: Yes (as I swipe my card).
Me: What do I need to push for credit?
Cashier: Just a second. (She does something on the register) Does that look right?
Me: Not exactly. My total should be $37.50 plus tax and not $25.00 plus tax. I bought three pair of pants at 50% off, making them $12.50 each. $12.50 x 3 = $37.50. I don’t want to steal a pair of pants.
Cashier (looking confused, by the way): You’re not stealing them. The sign was wrong. They’re buy one, get one free (holds up two pair). Since the sign said 50% off, I gave you 50% of the 3rd pair (holds up last pair) and the one pair you’re paying full price for (holds up one of the original pair). I can’t give you 50% off the free pair since it’s already free. (Now she’s looking at me like I’m incredibly dense and stupid.)
Me: But I should pay 50% off on three pair, not two.
Cashier: I can’t add money back onto the register (as she’s looking for someone to help her). The cash register is correct. You’re getting one pair free because that’s what they’re supposed to be and getting two pair at 50% off because that’s what the sign says. I’m going to have someone change that sign. (At this point she’s exasperated and just wants me out of her register line.)
Me: OK, but I still think my total should be $37.50 plus tax.
Cashier: No, it’s correct. Have a nice day.

I cave and leave but I feel like I should call Kohl’s and tell them I think I stole a pair of pants and try to go back in to pay them.

Wednesday, March 5, 2008

It's IV time again...

Bummer. Although the 'tuh' looks better, the doctor says it's too early to stop the antibiotics. Ron's foot smelled horrible today, almost like something had died. He said he'd been smelling himself for a couple of days but because he can't just jump in the shower without me going through a convoluted setup to get him in, he actually thought he just needed a shower.

Ron cleaned up as best he could while I was at work today, but still thought the funk was coming from body odor he couldn't get to with just a wash cloth. It wasn't until we got into the doctor's office and they unwrapped his foot that we realized the smell was coming from there.

Dr. Heady wasn't concerned at all and said that sometimes wound vac areas would develop a funky smell. He cleaned it up, cut off some more dead tissue, and made the wound bleed a lot. He said the bone is no longer visible and he sees some granulation taking place.

Tuesday, March 4, 2008

Isaiah-isms

I wish I'd been writing down the things that Isaiah has said during the past two years. His language skills have really increased since he's been going to the developmental program through the school system. When he came to live with us he spoke very limited words and mostly in his own language.

Before Amy got out of the Navy and came back home, Isaiah called me "mom" and would correct anyone who tried to say I was "grandma." Isaiah called her "mommy" and called Ron "grandpa" but we decided that since I was THE mom of the house, then that's what he thought he should call me, too. We had our pictures taken in the summer of 2006 and put them into a frame with the inscription "Isaiah and his two Moms" so it would be something that he'd have later and know that he didn't always call me by grandma.

Here are just a few of the things he's said fairly recently:

I just can't imagine our household these past two years without Isaiah being there. He's been such a joy and watching him grow and develop has given me countless hours of happiness. I thank God for him and for allowing me to be such an active part of his life. I hope that when he's an adult he'll have fond memories of his time with us.

The IV treatment is over!

Last night was the final IV antibiotics treatment. We expected the home health nurse would pick up the supplies, remove the PIC line, and have the medical supply company come by to pick up the pump and IV stand. Evidently, we have to wait on a medical release from the doctor who ordered the IV antibiotics in the hospital. He's not Ron's doctor so I don't know why the order for "10 days of treatment" doesn't automatically expire once the 10 days are up.

Hopefully we'll hear from them shortly and the PIC line can be removed. Ron would like to get out and about (in the scooter, of course) but I won't let him out until the PIC line comes out. I think the risk of infection is too great.

Monday, March 3, 2008

Update on Friday's events

Our regular IV nurse told us on Thursday that she had Friday off. No big deal, home health would send over a replacement bright and early - or so we thought...

Ron had an appointment with our family doctor scheduled for 11:20 Friday morning. I purposely made it for the middle of the day so the IV nurse would have time to come and take care of the infusion. It takes about an hour and she's usually there by 9:30. That gives plenty of time in case she's running a bit late or something happens to make the appointment run long.

I left work at 10:30 to go pick him up and it takes about 20-25 minutes to get there. On the way home he called and said a nurse never showed up to do his morning IV. He had fallen asleep so had not noticed the time until the replacement nurse called to ask him what time he was usually scheduled. She was planning on heading over right then. He explained to her that he was leaving at any time for an appointment with the physician and would have me call her.

I was very upset. He has to have a minimum of 11 hours between doses of this medication. I knew the earliest we would get home from the doctor was 1:00 PM and the nurse would probably not arrive until the 1-1:30 time-frame. I called home health and explained how upset I was as I should have received a phone call at 8:00 when they opened to find out a good time. I knew that the nurse coming in the afternoon would put me up until very late at night doing the medication and that wasn't going to work out.

To make matters even worse, we didn't even get into a room to see the doctor until after 1:00. I called the nurse back (she felt very bad for the mix-up) and told her to go ahead and see her next patient and just come back to Ron when she was done. She said she didn't want to put us any farther behind and would wait on us.

She called again at 2:15 for an update but since I was in the process of getting Ron back in the car, it went to voice mail. Luckily, we passed her leaving our street as we were coming in and although we'd never met, she figured out it was us so she turned around. She was very sorry for the mix-up and said she was just the fill-in nurse and didn't even start work until 10:00 in the morning. She agreed that we should have been notified when the office opened but the culprit was our regular nurse, who neglected to put the time to be seen on the paperwork.

I was going to go back to work but with the stress of the long doctor's appointment and the nurse confusion, I missed lunch and ended up with a low blood sugar. By the time I got food into my system and felt like functioning again it was after 3:30 and going back to work would have been pointless. So I went to bed instead.

On the good side, our family doctor was pleased with how Ron looked. She had some blood drawn to see how things are going and did suggest that he medically retire at this point. I asked her if we could wait to see what the kidney specialist says before we make a final decision. If he's healthy enough overall that going to work and sitting in the scooter won't cause him any other issues, then I think he should try to work. Otherwise, he'll not get out and around because he'll be spending too much time in bed. That wouldn't be good for him either. But, if his kidneys are causing him health problems overall then he needs to stay home and retire. We'll deal with the financial aspects as they arise. The most important issue is Ron's health and well-being.

Sunday, March 2, 2008

Imagine life without...

Think for an instance how your life would be without any one person in your life. What if there were someone you'd never met, never come into contact with, and never formed a relationship with. How would that action have affected where you are and who you are today? Do you think the change would be a better life or a worse life? Do you think you'd be a better person without that relationship?

One person may have touched so many areas of your life that it's hard to imagine just how it could impact you. Maybe that one person put you in contact with something that changed your life, or your perception of another culture, or your understanding of another religion.

If I picked anyone - current friends, former acquaintances, or even those I would consider to be not a friend - I see where that person contributed something in some way to my life. I can honestly say that I would not wish to go back in time and erase those meetings or those memories, even the sad ones because they all contributed to who I am today and how I view life's challenges and obstacles.

Even the slightest meeting with someone can go on to alter the course of your life and also theirs. I thank God for all the people who have crossed my path in one form or another. I pray they also feel thankful to have known me, no matter how briefly.