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.

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 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.

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.

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.

"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!

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.

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.