Monday, July 30, 2012

We've had another good couple of days. Since they can't get Bill's tube unclogged he's really making an effort to eat everything. He's doing a pretty good job and he's also able to swallow his meds. He has a little trouble with the larger pills but he keeps working at it until he gets them down.

Yesterday we took a drive to Amelia Island along the scenic route that was recommended by the housekeeper he has. We drove along the St. Johns river and inlets and the ocean, and over several bridges. It was a lovely day but so hot that the air conditioner in the car couldn't keep up and cool us down as much as we wanted to be. On the way home we stopped and had frozen custard. This place had been raved about but I was really disappointed. For my Illinois friends and family, Custard Cup and Mike's Chill both have better custard. This place only had chocolate, vanilla and chocolate/vanilla twist. They also had Italian Ices in various flavors and I guess you are supposed to get a "Blendini" which mixes the 2 together. Why not just flavor the custard? It was also pretty pricey, but Bill enjoyed it and needed the calories so it was money well spent.

We talked to the dietician again today and they are trying to get an appointment scheduled to get Bill's gtube removed. Dr. Blatt wanted to have him go in and have it unclogged, but Karen talked him out of it. She said he is too close to having it removed completely that she didn't want to put him through that. So, as long as he can maintain his weight, they won't clean or replace it. He has lost 2 pounds, but the last time he was weighed was Wednesday, so 2 pounds over a 5 day period isn't bad. He had lost 4 over the week before when he was still on total tube feeds. She wasn't too concerned about it. She's going to supplement his meals with Ensure and not bring it with his trays but between meals. They've been bringing Glucerna with his meals and he gets too full from the meal so he doesn't drink it. They have started putting them in the fridge and they are going to give him 1 tonight before he goes to bed.

His wound still looks good with just the dressing on it. It was a little gunky so it's still draining a little, but cleaned up nicely. It's so much better to just have the gauze dressing on it instead of the sponges and tubes.

Aimee, Lee and Dani are here this week and we are going to take Bill out to eat tomorrow night. That's so important to him and caused lots of problems when John was here. We were going to go tonight but it was raining and since he has such a hard time walking we (I) decided that it wouldn't be a good idea. So, hopefully the weather will be better tomorrow.

So, you're all caught up with the news from this end. I'll keep you posted!

Sunday, July 29, 2012

Pretty good day yesterday except that his feeding tube is clogged again and this time can't get it open. Hopefully he's eating enough that they won't have to replace it for just a few days. They've added Glucerna to each meal to help control his blood sugar spikes and to supplement the nourishment.

We didn't do much yesterday. We were going to go out for ice cream in the afternoon but we were both too full after lunch and it was too hot. Thought we were going to get some rain but all we got was thunder.

Aimee, Lee and Dani are on their way. They left yesterday afternoon and stopped about 10 last night. I know that Lee and Aimee are both early risers so they will probably get on the road early. Our friends Cindi and John are also coming back today for appointments at Mayo tomorrow. It will be good to see them too.

The man in Memphis I told you about did not get his heart. It turned out to be unusable after all. The message I got was that it was enlarged. I don't know if it was already enlarged prior to whatever caused the death of the donor, or if that trauma caused it. In any case, he is still waiting.

We're going to the little church service this morning and this time we can join in the coffee social! That's been the hardest thing for him. They have a lot of activities but most of them include snacks and since he couldn't have those he didn't go. There's also a movie this afternoon. Don't know if we'll go to that or watch the Olympics. Just have to see how the day goes.

Friday, July 27, 2012

Another great day, although Bill had a rough night and was a little distraught this morning when I arrived. He couldn't get any help in the night and soiled himself, which always upsets him. He's complained before about the overnight CNAs and Lisa, our usual daytime CNA has told us that when she comes in the call buttons are on the floor where the patients can't find them. But, I think just me being there helped him and he settled down to try some breakfast. He also wasn't dressed so I dressed him after he finished eating. His CNA today is one of the lazier ones, didn't check on him at all except to see if he was finished with breakfast and sat in the TV room most of the morning. And to top it off, his pajama pants disappeared! His laundry bag was hanging on the closet door in plain sight so why they weren't put in a plastic bag and put in there is a mystery. I have a sneaky feeling they were just thrown away with his brief when he was changed. We're checking to see it they went to the laundry but I think they were tossed. It happened once before and we found them, but again, that time we had a good CNA.

OK, enough of that. We met with the nutritionist this morning to devise a plan to discontinue the tube feeding. It was decided that he would be connected at 10 pm and it would run until 6 am. Also, if he eats at least 50% of his meal at each meal through the week-end, the tube feedings would be discontinued Monday. If he can then maintain enough calories, the tube will be removed shortly after that. We filled out his menu requests for next week, which included lunch and dinner today. When they brought his lunch it was a chef salad. It looked lovely, but, with the transplant, he cannot eat any raw vegetables not prepared at home because we can't be sure how clean they are. This was in big bold letters on top of his order! But, they brought him another lunch which was supposed to be beef goulash and all it was was the beef! But he ate most of it and some sherbet and fruit cocktail. His dinner tonight was his favorite...roast turkey. He said it was pretty dry and he had some trouble with it because he was not cutting it into small enough pieces.

He was able to swallow his meds tonight except for his Prograf. That one has to be taken on an empty stomach and he gets it at 6. They bring the dinner trays at 5:15. We're checking to see if they can move the time of the meds to 5 which I think will be fine because it's in the 2 hour window they allow for meds to be given.

The wound vac also came off today! It now just has a gauze dressing on it with a clear seal to keep it clean. This will be cleaned and changed every day until it is completely closed. Dr. Landolfo said he wanted to see him in a week and when they made the appointment it was for the 15th, so the nurses are going to call to see if it can be rescheduled. The wound looks fantastic considering what it looked like in the beginning.

We don't know how he managed to get in, and Bill said he just pushed on the door, but he visited the "Memory Unit" today! We had been outside and when we came in I told him to go to his room or the TV room while I stopped at the bathroom. He wasn't at either place when I checked and as I was heading to the nurses station to see if he was visiting them, I saw his hat wheeling down the hall! I got one of the CNAs and he was turning the corner when he got to the door so he went to the other side and there he was! When the door opened, the nurses on the other side tried to stop him thinking he was one of theirs making a break for it! Those doors are only supposed to open when a button on the wall is pushed, but Bill said he just opened the door and went through! It's a good thing I told them he was loose when I left tonight!

Leaving him up was something new for both of us tonight. Usually I make sure he's in bed since he's hooked to his food, but since they aren't doing it until 10 he stayed up. I warned him not to go to the bathroom by himself or to try to get into bed alone but who knows if he'll remember. I told him to go tell the nurses when he was ready to go to bed and they would help him. I also told them when I left. So far no phone calls and it's time for his last meds so maybe they're putting him in bed for the night. I don't know who his night nurse is. I saw a familiar good nurse walking across the parking lot when I was leaving so I hope she'll be on his floor instead of one of the temp ones. It is, after all, the week-end!

I have a prayer request for all of you. My daughter's boss's brother will be undergoing a heart transplant at 4am in Memphis. He is about the same age as Bill and has been living in the transplant unit at the hospital as his health had gotten to the point that he needed continuous IVs. This is the 3rd try for him. So, include Larry in your prayers along with his family as they stand watch. I know from experience what they will be going through!

All for tonight. Have a great week-end! And Happy Birthday to my granddaughters McKenna and Kiyann who are 8 and 5 today!

Thursday, July 26, 2012

Here it is folks, what you've all been waiting for...Bill has been given the go-ahead to eat anything he wants, and to drink anything he wants. No thick drinks, no pureed foods, he's been give no restrictions! They told me that was almost unheard of. The pathologist he saw today is a good friend of his therapist and they were on the phone immediately after we got the results. There was a hamburger waiting for him when we got back and he got hugs from all the therapists. His physical therapist is on vacation and his other therapist was going to text her! Everyone, including us, were ecstatic!

He's still going to get some tube feedings until they see that he is taking in enough calories. When he is, they will discontinue them and remove the feeding tube. We're supposed to meet with the nutritionist tomorrow to set up a plan.

Tomorrow is the appointment with the surgeon. Hopefully the wound vac can be removed, if not tomorrow maybe by next week.

So, today has been a red-letter day. Thanks for all the prayers and for crossing everything that was crossed. Keep it up a little longer for a good report tomorrow. All for tonight, I have to make brownies!

Wednesday, July 25, 2012

French toast with blueberries, veggie omelet, sausage links and apple juice...it's what Bill had for breakfast! And it was not pureed! He ate about half of it and had no problems chewing or swallowing. The juice was not quite nectar thick so it was the thinnest liquid he has had. This of course was the final prep for his modified barium swallow study tomorrow morning. We'll go back tomorrow afternoon to get the results. We wish it was back to back, but it's not. It will also throw off all of his therapy. They will try to fit it in between the study and the time we have to go back for the consult.

His wound is so small now it's hard to believe it was as big as it was. The measurements today were 3.7 cm in length (compared to 7 cm to start with) 1.6 cm in width (compared to 3 cm) and 0.3 cm deep (compared to 3 cm deep). The nurses seem to think that Dr. Landolfo will recommend that the wound vac be discontinued and just cover it with a sterile dressing to let it close on it's own now. There is no drainage to speak of and the lump that was beside it has disappeared. They think that it was a pocket of fluid that has been drained and the rest of the fluid will be re-absorbed by his body.

He has done so well now with standing unaided. Of course someone is always with him when he stands but he's very steady on his feet now. He did get a little wobbly when he was getting into bed tonight, but he was concerned with the tubing on the vac and his feeding tubing since he had been connected for the night. But, stubborn man that he is, he didn't want to get into bed before they connected him.

No other news that I can think of. Keep everything crossed that can be crossed, and don't forget the prayers that this study tomorrow is successful. It will mean that he can start a regular/semi-regular diet and the gtube can be removed. I'll let you know the results tomorrow night.

Tuesday, July 24, 2012

It's been interesting the past 2 days! Bill's biopsy went well and the results today were no rejection again. His prednisone is going to be lowered again which could also help with the mood swings. He only had a short time yesterday when the evil one started to come out. But it still seems to work when I tell him I'm not talking about that anymore. And this time the change was almost immediate. Makes me wonder if he knows what he's doing.

His swallow study has been scheduled for Thursday morning and we will get the results that afternoon. He also has an appointment with the surgeon on his wound. Maybe both the wound vac and the feeding tube will be gone soon.

JoEllen has been pleased with his progress while she was gone. He ate a banana yesterday, without it being mushed and today he ate most of a bowl of oatmeal with milk and did quite well with both of them. She would like to have him put back on the Aricept and Namenda to see if it helps his cognition. I've got a call in to Dr. Yip to see if it will affect the heart any.

He walked quite a bit the last 2 days and has gotten quite steady without any support. He still gets tired easily and I think that's more a result of having to concentrate so hard to get his legs to move how and when he wants them to.

There has been another patient who has been quite abusive to the staff on the unit. He spits at the nurses and deliberately pours his drinks on the carpet and yells at the CNAs. Yesterday he was loose on the unit and stopped me and asked if I knew where the store was. (There is a store there but I haven't found it yet). I told him I did not know and he told me to turn around and go back the way I had just come and I would find it. I told him all I had seen down there was the piano. A staff member walked by and he told me just to follow her and I would find it. I told him I didn't want to go back that way and he then asked if I was as stupid as the woman who just walked past us! I told him I guessed I was but I wanted to go the other way. Since I knew how badly he treated everyone I really wanted to ask him if he was always that rude to people, but Mom, you raised me too well! I just couldn't do it!

I got my new glasses today finally and, even though it took awhile, I can see quite well with my regular glasses. However, I can't see worth beans with the sunglasses. And only the top half of the lens is tinted. I can see fine through the bifocal part which is not tinted, but the clearest part for distance is in the progressive section which is where the tint stops. Guess I'll try them for a few more days and if they don't work I'll take them back to see what can be done. They also aren't very dark and since my travel is east in the morning and west in the evening, I'm always looking into the sun. Good thing I still have my "old people" glasses that fit over my regular ones. May have to keep wearing those!

 Oh yeah, he finally got a new IV pole. The one he had was very unstable and was finally leaning so badly that if it was touched it started to topple. Bill hit it yesterday with the wheelchair during speech therapy and JoEllen made a great athletic move to catch it before it hit him on the head, while forgetting where she was and said a couple of choice words! I finally caught Tammie before she left and showed it to her and within 10 minutes we had a new one. This after 3 days of asking for 1!

So, that's what's been going on in our world the past couple of days. We've now gone over 10,000 hits on this page which is unbelieveable to me. I never thought it would go this far when I started it 3 years ago.

Sunday, July 22, 2012

Bill was up and dressed and ready for church by the time I got there this morning. He even had on trousers and a button down shirt instead of shorts. Lisa found a pair that the wound vac would fit through, although taking them off this evening was a chore. We had a lovely little service at the church and Bill made it through all of the hymns except How Great Thou Art. But, I saw several wiping eyes during that one.

Instead of using his wheelchair to go to the service he just used his walker and by the time we got back to his unit he was pretty tired. So, he got in his chair and we went to the TV area instead of watching TV in his room. I know he gets tired of being in there.

He asked me if I was getting hungry and I said I was thinking about running out to get something and he got very upset that WE were not going to get some lunch. And, just like that, the evil Bill showed up. He was not happy at all when I left and when I got back in less than an hour he had really worked himself into a tizzy! I am keeping him locked up there until all the money is gone and he needs to have his credit cards there in case there is something he wants to buy. He again took himself outside and Lisa went out to talk to him for a long time. She also made sure that I was OK since a lot of family members do get upset with behavior like that. And, while it does upset me, I was fine today. He finally came in and after a little while he was back to the good Bill. It seemed to work best when I told him I was not talking about certain things and then just ignored his rants so maybe that's the tactic to use, at least until that doesn't work anymore.

We ended up having a better late afternoon and he was fine when I left. We have a very early day tomorrow and I have a feeling that they are going to forget to disconnect his food at midnight and they will give him his anti-rejection meds in the morning. I reminded his nurse tonight before I left that the food was to be disconnected and that I was to take the meds with me in the morning, but, since she put the Prograf in with the other meds instead of under the tongue, I don't know if she'll remember. I think I know why they have such a hard time with that med. Even though the instructions say sublingual it's a capsule and they can't figure how to do it sublingually. However, the entire list of instructions for it say to tap the medicine into one end of the capsule and then take it apart. If they would read the entire directions they would know how to do it. And, after 6 weeks, they should know, except all of the week-end nurses are part time and only come in on week-ends. This one even said this was the first time she had worked on the rehab unit! The only saving thing about the mix-up tonight was that his food had not been disconnected so it was given on an empty stomach as it's supposed to be.

Bill has it in is mind that the biopsy is a step to getting his gtube removed, even though I have explained it to him step by step. Maybe by morning he'll understand it.

All for tonight. Since I have to be there so early in the morning I need to get to bed as soon as the laundry is done. I'll let you know how things go and what the results are. Of course we won't have them until Tuesday afternoon, but I'll let you know how the procedure goes tomorrow.
YAY! The "good" Bill was around all day yesterday!

We had a lovely outing. Drove to St. Augustine along the coast road. Crossed 3 big bridges, one of them a drawbridge, and since it was a pretty day there were lots of boats out. We didn't get out anywhere, just drove through town and to the beach there. Unfortunately the towns in this area built up the dunes so that you can't park and just watch the water. But, along the coast road, there was a closed restaurant with a parking lot that overlooked the water. We were able to park there for a time and saw some "black fins" rise out of the water. Don't know what kind of fish they were but they were pretty close to shore. Some swimmers saw them too but didn't panic so I don't imagine there was any danger. All in all we were gone about 3 hours. We didn't have any trouble in and out of the car although I had to remind Bill of the new way to get in and out of the car. He did get pretty tired walking since we didn't take his wheelchair and the distance he did walk was a little longer than he usually walks.

He didn't make a fuss when it was time for meds and food and there was no complaining through the day about not getting anything to eat. His med nurse gave the meds on time but didn't know how to do the Prograf (the one under his tongue). He must not have been inclined to read all of the instructions in the computer on the method of delivery.

There was a problem with his feeding tube, the line kept clogging. We know that it was from the pump to the port because it flushed wonderfully and there was no problem with the meds. I left before the problem was fixed, mainly because I knew the night nurse coming in and knew that she could fix it. That's part of the problem with the staff here. They have part time nurses come in on week-ends for a 4 hour shift and they're not familiar with everything.

Bill was very clear minded most of the day. He looked at his calendar several times and read about his upcoming biopsy tomorrow and the 2 granddaughter birthdays this coming week. He even reminded me that we need to call them on Friday!

This morning is the church service and we are going to that. Lisa was going to make sure he was dressed and ready to go on time. And tomorrow is his biopsy. It will be a long day since it starts with having to be at Mayo at 7:30. We should be back by 10:30 but then they will do therapy all afternoon so he will be pretty tired. I just have to remind them to disconnect his food at midnight and to hold the Prograf and Cellcept in the morning and give them to me to take with us. I also have to remember to take all of the supplies to give him the meds after the biopsy and his log book...I need to make a list!

I hope everyone has a great Sunday!

Friday, July 20, 2012

The last 2 days have been interesting to say the least. As far as Bill and therapy have gone, he's done really well. We've walked together several times and today we went to one of the independent living apartments they use for therapy to see what kind of bath/shower chair we need to get. We also had a visit from some friends we've met here which picked him up some. I know he's tired of just seeing me all the time.

The med nurse that was brought in yesterday was competent, but the meds were late, as was his food. And, as soon as it was connected, it fell out. The shunt that is used has come off and no one will believe me that they are putting the tube into the wrong port. The one they are using is the one used for his meds. As it is now, it has to be taped in and then untaped for meds and then re-taped. Of course all of that involves twisting and turning and I think they sometimes forget that the tube is connected to Bill and is not just a piece of tubing. Finally his nurse tonight saw what the problem was.  But, nothing was done before I left.

Bill was fine today until 5:30 when he was connected to his food. He then started with the typical week-end ranting. Mary Rose called during that time and he talked to her for 30 minutes. When he gave me the phone back all she could say was "wow". He complained continually while he was getting his meds and then all of a sudden decided he was ready to get into bed and was back to himself! It's a little unsettling when he swings so fast from one to the other.

We're going to go on our roadtrip tomorrow. I don't know where yet, we may just drive for awhile. It's very easy to sign him out, I just have to make sure he's had all of his meds. I can't decide if I'm going to take his wheelchair or just his walker. I'll see how steady he is in the morning.

We are now closing in on 10,000 hits to this blog which just blows my mind! Who knew when I started this in 2009 that it would have so many.

I'll let you know how tomorrow goes, and if I'm dealing with Dr. Jekyll or Mr. Hyde!

Wednesday, July 18, 2012

We've had a good couple of days. Yesterday we went bowling, at least pretended to go bowling while playing the wii. Bill had a difficult time with it but it takes fine finger motions along with the arm motions. It's probably the only time I will ever beat him, wii or real, in bowling.

Today we practiced transferring to and from the car and there were no problems at all. I just have to make sure that he backs into the seat instead of stepping in as most people do. We've also been given permission to walk in the afternoons without a wheelchair coming with us. There are enough sitting areas in the unit that if he gets tired there would be a close seat. We did that today and sat for a while on the sofa.

Bill actually met me as I was coming down the hall this morning and he was dressed and ready to go. He had been watching for me from the patio and saw me walk by. He said he had a terrible night and that they bothered him all night. But, he hadn't wanted me to leave last night so he was unsettled early. There were no problems since they didn't call me so I'm not sure what bothered him.

We're going to try to go for a ride this week-end since we didn't have any trouble getting in the car. I'm hoping that will perk him up. I talked to Stephanie today, had a question about Coke and his gtube, and told her that he's getting somewhat depressed seeing the same thing each day and being confined so much. She didn't have much to say about it and I told her that the staff at Cypress was also aware of it.

Our housekeeper is going to give Bill speeding tickets for racing his wheelchair. On the hard floors he really goes but slows down on the carpet. He also roams so much that they're having a hard time keeping track of him when I'm not there. He usually ends up at the nurses station talking to everyone.

His wound looked fantastic today. The dimensions are now 4.2 x 1.4 x 0.6. The top part, which was the deepest has now sealed at the edges so it won't be long now. We still don't have an appointment with Dr. Agnew and we're all really wanting him to see it again.

He tried his French Toast yesterday morning and couldn't eat it. But, his tube had gotten clogged in the night and it took almost an hour to get it open. They use long thin tubes that remind me of crochet hooks to try to dislodge whatever is stopping it and I think they irritated his stomach. He also is now having to adjust to real food in addition to the liquid. Since breakfast didn't work he ate some soup and crackers for lunch and did pretty well. He had a harder time with the saltines than the graham crackers. Today he had mashed potatoes and gravy and said they were pretty good. I don't know what he'll get tomorrow. The only thing for breakfast he could get is grits and he doesn't like those and the soup tomorrow is some off the wall soup. Maybe some pureed french fries.

I was catching up on some of my blog reading tonight and one that I follow is about another man waiting to be transplanted. I knew that he had received his heart in March but hadn't been back to the page to see how he was doing. Sadly, he passed away in early April due to complications. This was a young man with 2 young children in California. His wife started following this blog which is how I found out about Patrick. I was so sorry to read about him, but his wife is doing well and still is in touch with his transplant team. This situation makes me feel even more blessed to still have Bill, even with all of his problems. He's also started really noticing some of the other residents and commented today that some of them are way worse off than he is! He's also wondering what has brought them to Cypress, if they have all had strokes or not. I know that some have had knee replacements, but there are many who are stroke patients. And you can tell that some of them won't recover to even the point that Bill has reached. He's becoming the poster child for the unit. Everyone from the CNAs and housekeepers to the RNs and social workers and therapists are amazed at how far he has come in the last 5 weeks. He's much further along than they thought he would be at this point. Swallowing is the sticking point right now and that's getting better so maybe next week they can get the next study scheduled and move toward removing the gtube.

I've rambled enough for tonight. Until the next time...

Monday, July 16, 2012

Today we were back on track until late this afternoon. Bill did quite well in PT this morning and made a complete "circuit" without having to sit and rest. Because he "walks" his wheelchair so much wandering his hamstrings have gotten very strong now and he's doing much better walking and standing. He also did well in OT and he may get to go upstairs tomorrow to play the wii and go bowling. He also ate graham crackers and had no problems at all. This therapist let him eat and just observed. Didn't ask him about swallowing a lot. She's going to try to bring him some cream of wheat in the morning, or have some French toast pureed. I don't know how that would be, but we'll see.

He did get a little sad this afternoon. He's so tired of being confined and not being able to see other places. We're going to practice getting in and out of the car this week so I can start taking him to his appointments. If it goes well I'm going to see if I can take him out for a couple of hours this weekend for a ride.

His dressing change was painful for him today. It looked like his skin has gotten irritated again. But, the wound looks really good and there was almost no drainage in the canister. She'll take measurements again Wednesday, but a quick check today showed it had gone down another 1/2 cm in length. His vac has quit charging so they've had to order a new one. Hopefully it was on the truck that came as I was leaving. We've had to tape the cord into the machine to get it to charge.

Part of Bill's behavior problem the past week was due to a urinary tract infection. They finally told me that today and he's been on Levaquin again. He's also been put on Advair. He doesn't need the breathing treatments any more and the Advair is just a precaution so that he doesn't start getting congested again. Most of that comes from not always swallowing.

John's family got home last night and Don and Shirley have made it to their friends in Georgia so it's just the two of us again. Aimee is supposed to come the end of July and Mary Rose is coming the middle of August. We'll finally get to meet William.

We're entering a phase where there may not be a lot happening on a daily basis. He'll continue to get the three therapies each day through the week. So, if there isn't a post, don't worry. It will just mean that nothing really new is happening. Of course I will always update the major accomplishments and results of any appointments at Mayo. So keep checking and keep praying.

Sunday, July 15, 2012

I know all of you are wondering how today has gone after the post last night, so here goes...

He was bright eyed this morning and in a very good mood. He also acknowledged how he had acted yesterday and that he was angry all day yesterday. We went to the church service they have and it was good to hear him singing. He also joked that they needed a good piano player! And, he's right the guy who plays is not very good and no, I'm not volunteering!

After church we went outside and got a phone call from our church. They knew from reading here that we were having a hard time so they had circled the wagons and were having a special prayer for us. We were both touched by it! Y'all are awesome and we love all of you. Ruth and Linda, pass it along to everyone please!

John and the gang came about 11 and stayed for just a little while before hitting the road. It wasn't as hard as I thought it would be for Bill to tell them good-bye. They should be home any time, depending on how many stops they had to make. With 5 kids, who knows!

Bill did start to revert back to yesterday's mood around 5. It seems to stem from having his feeding tube hooked up. It does restrict his movements since he can't leave his room. Normally he would be able to but the pole it is on is very unstable so we try not to move it much. He came out of it some and hopefully will be OK now. Shirley and Don were just about here when I was leaving so they've been there a little while now. He was very anxious to see them.

Thanks to all of you for your comments, emails and texts after last nights post. They meant a lot. And I got a good lesson, my scripture this morning, AND my devotion, AND the first song I heard on the radio on my Southern Gospel staion, AND the first hymn we sang this morning all had the same message. When you give it all to God TRUST that He knows what to do with it and let it go. I keep wondering how many times He has to keep telling me this before I get it! And Mom, I love you!

All for tonight, blessings to each of you!

Saturday, July 14, 2012

Yesterday's bad day was just a precursor for today. Again, Bill was very angry about not getting food and the way he is being treated, with no one letting him do anything and they are not doing anything for him there. This is becoming an every week-end event. I think it's more to do with not having the structure that he has during the week with therapy every day. Since he doesn't have anything on week-ends I think it throws him off, even though I suggested several things that could be done.

The morning started fine and he even used his computer some to check his email. We also spent a lot of time outside. John, Heather and the kids came for awhile. It was while we were waiting for them to come that he started with the complaints.

At one point this afternoon he left his room and let himself out onto the patio in the other wing. He wheeled himself into a corner and sat pouting for quite awhile. I stayed in and watched through the windows. One of the CNAs went out and talked to him for awhile and he finally decided to come in.

I've tried everything from being gentle and understanding to telling him how it makes me feel when he starts talking about just giving up. He mentioned several times that he was being tied down, and when his feeding tube was connected that was just about the last straw. He was nasty to his nurse when he came in for meds and wasn't going to let him give them until I told him he was just being mean and ugly. He also made ugly comments when I told him I was coming home.

I know that it's a combination of the stroke and meds, but that doesn't make it any easier to deal with. It just brings me down too. So, I come home and cry and get things ready to do it all over again tomorrow, not knowing if he's still going to be in this mood or if he'll be back to himself after he sleeps. At least he'll be getting some Xanax tonight if he hasn't already gotten it. He may need to have some during the day, too if these mood swings keep up.

So, pray for guidance for me and rest and understanding for both of us. Tomorrow is already going to be a sad day with John and everyone leaving. But, Don and Shirley are coming for the evening so maybe that will help him some.

Sorry for dumping on everyone.
Bill didn't have a good day yesterday. He's got a little hemorroid that is really bothering him, and he's also having some stomach cramps that cause almost immediate diahrea, so he had a couple of accidents yesterday. And with the hemorroid, it's painful to clean up. Supposed to be getting something for both of these. He wasn't able to do much walking for PT because of it.

He did eat his spaghetti and I got a thumbs up. By the time he got it most of the sauce had been strained off but he had noodles and meat and he managed just fine. Next week he will get softer things again since JoEllen is on vacation.

He got up again yesterday, out of his wheelchair while I was getting some lunch. I didn't get called, but I had checked with the nurses before I left so they knew that I would be back before they could even get him assessed, and I was. May have a couple of bruises, but no damage to his gtube or wound vac. It's amazing that he remembers about those when someone is helping him, telling them to be careful of everything, but he doesn't remember them when he tries to do something himself.

He was very confused about his feeding tube also yesterday. It was like he had just gotten it and had never had anything connected to it. For several hours, and could be more after I left, he kept saying that it was awful that they fed him all night and that when it was gone in the morning, the whole thing would come out. This is a new development. I don't know if we've talked too much about the tube coming out when he's able to eat anything he wants again, or if it's just jumbled in his mind again.

The wound looked even smaller yesterday than Wednesday. I wish we would get the appt set with Dr. Agnew again for them to check it. The vac is going to come off before long!

All for this morning. I need to finish some bookkeeping and get it mailed today. I'm doing it in shifts this month. Oh, I haven't gotten called all week at night so the Xanax or Ativan is working. Selene, he RN yesterday, said she thinks it's Xanax, but he seems to be sleeping all night now.

Thursday, July 12, 2012

Bill had an awesome day!

I went this morning to see him before his therapy and then I left to run some errands and get the spaghetti sauce started. I also took his laundry home and got it going. He called me at 11 and said that he was done with therapy and wanted to know when I was coming back. I told him as soon as his clothes were dry I would be there and he said he thought he would go outside.

I couldn't find him when I got back and it turned out that he was not finished with all of his therapy, he was having OT then. BUT, he had managed quite well without me and explored the unit a little on his own. That made me feel good that he didn't panic about being alone.

He was given a couple of tools to use as aides in dressing. With the feeding tube it's hard for him to bend over to put on his shoes and socks. He was given a sock helper that he puts the sock on and then he can get his foot in it and pull the helper out as he pulls it over his foot. He also got a long shoe horn and elastic shoe laces so that he doesn't have to tie his shoes. These may only be needed until he can bend easily but who knows, he may need them all the time.

He's going to get spaghetti tomorrow for lunch. I talked to JoEllen and she said that I could bring him some and we would mush it up and see how he did with the ground meat and noodles. There's enough food for an army, but when they all get here there's 5 kids and 2 more adults so it may all be eaten!

All for tonight. Let's all pray for another good day tomorrow.

Wednesday, July 11, 2012

Bill did well again today. He walked to therapy today instead of using his wheelchair. He did start too fast and had to stop and rest but he then worked really hard. By the time he was finished with OT and PT, his oatmeal was cold and he didn't think that reheated oatmeal sounded too appealing so they tried something different. Today he got Lorna Doone cookies and thinner apple juice. His bite had not been checked yet and his liquids were always a thickened nectar strength. Lorna Doones get mushy quickly and she wanted to see how he did with the thinner liquid. The first bite of cookie almost got away from him and a few crumbs went down wrong, but he managed to cough them back into his throat and get them down. The rest of the cookie went down well and he did quite well with the juice. JoEllen is going to talk to the other therapists about letting her work with him first to get the breakfast foods in before they get too cold.

He gained 4.4 pounds in the last week which may sound like a lot since most of us concentrate on losing weight, but he was only weighing in the 140s. He was at 152.6 today and is starting to look healthier. His arms and legs are still very thin but they are getting better. And since the weight gain has been over a 7 day period it's nothing to be concerned about as far as the transplant goes.

His leg looks awesome! The initial measurements of the wound when he got to Cypress was 7cm x 3cm x 3cm. This is length, width, depth. Today the measurements were...drumroll...5 x 1.4 x .9.  Saral, the LPN who is in charge of the wound care, is almost beside herself at how good it looks. His RN today, Selene, hadn't seen the wound in quite awhile and couldn't believe how it looked. That has been the best part of his care. I have absolutely no complaints about the wound care.

Amber's going to stay with me again tonight, and tomorrow I'm going to cook spaghetti for everyone, if I can remember how to cook! I came home immediately after Bill got his meds at 6 with a killer headache that Aleve has hardly touched. So, I'm finishing this, eating a small dinner and going to relax. I can't go to bed yet since John hasn't dropped Amber off and she doesn't have a key. But, just sitting here quietly should help. So, all for tonight. We'll meet again tomorrow!

Tuesday, July 10, 2012

Bill had another good day today. He ate most of a bowl of oatmeal and drank some apple nectar. He did quite well and JoEllen feels better about him eating. She's going to let him have breakfast, at least something soft every morning, and she's going to let me monitor it. That way he doesn't have to wait for her to come. Of course that means that I have to be there an hour earlier than usual since breakfast comes at 7:15.

He walked 2 circuits today in PT and worked his shoulders more in OT. OT also watched us do transfers from his chair to the toilet and chair to bed. I told her we had not had any problems and I felt comfortable helping him.

I think he got his Xanax last night, I was not called any. He said he slept pretty good and he was very alert when I got there. He had already had his shower and was dressed when I got there. He was also ready to go for therapy so got started early.

But, by noon he was clearly tired and droopy. We've gotten so we can tell by looking at his face when he's really tired. I can mostly tell by the droop of his mouth on the left side. Most of the time he controls it, but when he's really tired it's really noticable. His blood sugar was also pretty low, only 81. He was also confused some and his routine was thrown off a little by an interview by the social worker.

After he rested awhile, he looked better and at 6 his blood sugar had swung the other way and was 186. It hadn't been that high for a long time. Don't know what made the change, but both of the numbers could have been the cause of his confusion.

John and Heather and the kids, all but Gage, came to visit tonight and Amber is staying with me tonight. We hit McDonalds on the way home and we're both wearing down. They spent the day at the beach in the wind and sun. She's not going to go with me in the morning, just hang out here for a little while. Hopefully I won't wake her in the morning.

All for tonight. Sleep well!

Monday, July 9, 2012

Another long/short night. Got called at 11:30 to come back. Bill was very agitated and every time they left his room he tried to get out of bed. I finally got him calmed down and asleep about 1 and got to bed at 1:30, back up at 6:30. When I got back this morning, he was awake and in a great mood and remembered nothing from the night before.

I talked to the PA and we've decided to try some Xanax or Ativan to see if that will relieve some of his anxiety. Since he had been on Xanax until September and did very well with it we're hoping it will relax him enough to sleep.

He worked very hard in all of his therapies today, doing all of the tongue and swallow exercises he refused to do this week-end! They also worked on some memory recall to see what was a memory problem and what was just word recall problems.

This afternoon he ate an entire bowl of tomato bisque and a little jello and had no trouble with any of it. It seemed, even to JoEllen the therapist, that the natural act of eating was coming back. She was very pleased. She's going to bring oatmeal and scrambled egg tomorrow to see how he does with something of more substance.

John and Heather came this afternoon and are bringing the kids back tonight to see him. I came home to get some much needed rest. I think Amber is going to stay with me a couple of nights. She's the only girl in the group so she's gonna hang with grandma.

The dressing on his wound was changed today with no pain medication and he did well with it. We could not believe how great the wound looked. It's considerably smaller than it was Friday. She will measure it again Wednesday and we're both anxious to see what the measurements are.

Hoping that it's a quiet and restful night...only time will tell!

Sunday, July 8, 2012

Well, I got called at 2:30 this morning. Bill got out of bed and pulled his IV pole over when he fell. He also hit is head, neck and back on something (my guess is the foot of the pole) so they had to call in the xray people. Shortly after I talked to his nurse his CNA called and wanted to know if I would talk to him to calm him down so I did that. He was very emotional and it took a little while but I got him to calm down some.

I did some research this morning before I left and from what I read, if he's a danger to himself we can request bedrails. The dr. has to write an order for them and he can't be confined to bed 24/7, but I think that needs to be done. When I got there this morning he said that he had messed up everyone's night so he remembered what he had done. I talked to him about the bedrail and he agreed that it might help. Most of the time when he tries to get up he's wanting to go to the bathroom and he went a lot yesterday. They were also going to check for a UTI just to make sure there wasn't an underlying problem.

We went down to the church service this morning and got through most of it before he had to use the bathroom. But this was the first time he wanted to go. It was a little tough on him when we started singing, but he handled it well. I had noticed that before when we watched services on TV. If it was a song he knew he would tear up. That's just another side effect of the stroke.

Because he was so tired he again became beligerent about eating and people not letting him do anything. He thinks that since John is coming we need to take them out to eat, which is something we would normally do with guests. That starts the whole process over of why he can't go. At one point today he unlocked his wheelchair and started wheeling himself out of the room. That is sort of a good thing. I want him to leave his room, especially if I'm not there and he is in his chair so that he may start interacting with other residents. I watched him from his doorway and he got to the middle of the hall and was stopped by a CNA. He was bringing him back to his room, but they were all glad that he was wheeling himself. The reason he took a ride was to find a cup of coffee. If I wouldn't get it for him, he was going to get it himself!

In case you've been wondering, his meds have only been late once this week and the nurse covering for the meds had to be brought down from the other floor. The unit manager was supposed to cover but she didn't. But, that's the only time they were late at night. Mornings have been fine.

So, hard day today. Hopefully tomorrow when he gets back into his normal routine he'll be better. I think it will also help him to see Johnny. I'll let you know how it goes.

Saturday, July 7, 2012

I thought my bad start for the day was going to continue through the entire day. Bill was sitting in his wheelchair with just his undies on, barefoot, no blanket, no call button, no fall alarm. I asked him what was going on and he said he had been to the bathroom and when they got him out they told him to just sit there and someone would be back in! I covered his legs with his blanket, saw that the wound vac had been unplugged from the wall instead of from the vac itself (if does run on batteries) and was sitting in his lap instead of hanging on the back of the chair. I fixed that and it was another 30 minutes before the CNA came in and she was very surprised to see him out of the bathroom since she was the one who put him in there!

She managed to scrounge up some towels but no washcloths and gave him a bath. He was supposed to get a shower, but since she was washing him with a towel it would have been another wait for washcloths and he was ready to get dressed. Complaints have been made about the linen service running so late. Patients want to get up and showered and dressed before therapies start at 9, but if the linens don't get there until 10...well you get the picture. Either the patients don't get showered or everything gets pushed back. I also found out that showers are only done during the day shift, the 3-11 shift will not do them.

Anyway, as she was getting him dressed, I realized something was missing. His Foley catheter had been removed! And, he peed! I've never been so excited about basic bodily functions before! He continued to go through the day, so we know that it's finally working again! One less thing to worry about and 1 more "attachment" gone!

After he was dressed and got his 9 am meds we took a walk around the lake. Well, I took a walk around the lake and he sat and rode! It's probably about a mile around and I was hot and tired when we got back. I'll probably be sore tomorrow. I told him he gets to push me next time and he said he would...into the lake!

He worked with his computer a little through the day and did part of a word search puzzle and then we watched tv. His attention span is still short. We did talk some about his situation. He made the comment about how the whole thing ruined his life. I reminded him that he knew bad things could happen with the transplant and it was just bad luck that the bad stuff happened to him. I also reminded him that he was getting better every day. He then made the comment that he didn't think he would ever leave the center and he was tired of hospitals. That's totally understandable! And, we've come full circle to the conspiracy to not let him eat and they need to fix his swallow. I told him I'm not arguing about that again this week-end!

He's very excited about John coming tomorrow, although he started feeling sorry for himself when I told him he couldn't go to the beach and out to eat. He wants to do the things we would do if he was home and they came to visit. He said all he'll get to do is exercise. I told him all John wants to do is spend time with his dad and it doesn't matter where he is.

He wanted me to spend the night with him tonight, not because he was upset about anything, he just didn't want to be alone. But, I told him the only place for me to sleep was on the mat on the floor and I wasn't going to do that. He may call me in the middle of the night but I hope they give him some Benadryl and he'll sleep. The PA said she would write the order for either Ambien or Benadryl and he could have either.

So, the bad day turned out to be pretty good even with the rough spots. I'm heading to the shower and then to bed. Usually night showers or baths wake me up so I'm hoping that it won't tonight. Have a good night!
Good morning! Although I don't know if it's a good morning or not. I had this post mostly done and it suddenly turned blue and everything except the "good morning" was gone. I hope that's not an indication of how the entire day is going to go!

Bill had another good day, although he complained all morning about being tired. He said he slept good and he was sleeping when I got there so I don't know. He finally got his scrambled eggs and hated them. Said they tasted terrible. So, he got some oatmeal instead and said it tasted pretty good. Dressed himself for OT and did all of his work for PT. Michelle brought a chair pedal thing in for him to use this weekend. He can sit in his wheelchair and pedal or put it on a table and use it with his arms.

He actually looked more like the old Bill at one point yesterday. His mouth wasn't drooping and he was speaking very clearly. Hopefully that will continue.

The wound vac was replaced yesterday afternoon and it actually looked even better than it had with just a gauze packing for 24 hours. We're going to try to coordinate the dressing change and the next appointment. Maybe it can be on a day when the vac is due to be changed so it doesn't miss a day or stay uncovered too long. It's come too far to have a problem now.

John and his family are coming tomorrow for a week and Bill is very excited. John just wants to spend time with his dad and I'm going to take some time off, at least a few hours a day to get some stuff around the house.

All for now, have a great week-end.

Friday, July 6, 2012

Had a very long day yesterday but was a very good day overall. Up and out to the dr for all morning appts. The appointments went very well and Dr. Agnew and his PA Rob were both very pleased with the way the wound looks. Rob was also impressed with Bill's overall progress. He was able to walk from the wheelchair to the exam table and back, with help of course, and was very steady.

We also managed a couple of pitstops with transfers from the chair to the toilet and back just like we had been doing them for years. We sat outside at the pond at Mayo for about an hour in between appointments since it wasn't unbearably hot and there was a nice breeze. The main drawback was waiting an hour for transportation back to the center. We start practicing car transfers next week so that we can go ourselves next time. With the valets and patient aides at Mayo we'll be fine there, it's just in and out of the vehicle at Cypress.

Rehabs also went well and Bill got some coffee! He didn't like it until they put some sugar in it but then he said it tasted good. Of course he only got a few spoonfuls and it was thickened some, but it was coffee. Today she's bringing him coffee and a scrambled egg.

He was still very confused when I got there and Lisa, the CNA, said that he was very confused and talking about the man coming in and being rude to him and stealing things. She has checked the schedule and there were no male nurses working. Bill has told us this several times and putting it together, it's after he's had the Percocet for the dressing change. I had noticed that he starts talking about things that don't make sense after he's been medicated so I'll have to see if they can go back to just 1, especially since they aren't using as much of the seal tape. I've also asked that they try to get the Ambien changed to just Benadryl at night. His mind is still cloudy enough at times without adding the extra chemicals. His anti-rejection meds can also have an adverse reaction. We'll see how removing these two drugs goes before I call Stephanie about the other drugs. The last time I mentioned this to them I was told it was all the stroke but now I don't think so. Besides, who spends the most time with him?

His med nurse last night did not know how to give the Prograf except that it went under his tongue. She said that the computer did not specify how it was to be given except for sublingual. I didn't tell her that it does say how since I have a printout. The capsule did melt but it took awhile and Bill had to hold it under his tongue until it was done. It seems like this battle will never end, until he's able to take them by mouth.

All for this time. I think I hit all the highlights of the day.

Wednesday, July 4, 2012

Bill had a very good morning. He was able to eat some mashed bananas and had no trouble with them. He had a good but quick session with PT and OT because the nurses wanted to premedicate him for his dressing change. The wound looks really good and has really shrunk. It is measured every Wednesday and it has shrunk 1 cm in length, which is a huge amount for a week.

He goes to see Dr. Agnew tomorrow for a check-up and he will probably check the wound. He's ordered a chest xray to probably see how his breastbone has healed. The transplant was 2 months ago yesterday. He, Bill, seems to think that there's going to be a procedure tomorrow to fix everything with his throat so that he can eat. I don't know where he got the idea unless it's because he's going to see a surgeon. And, every time we've gone to Mayo a procedure is done. It's really hard to tell with him.

I've noticed that the Percocet really affects Bill's mind and it lingers for several hours. He was given it at 2 this afternoon and he is still somewhat incoherent. He called me a few minutes ago and wants to pay for a marriage license for one of the nurses. He was almost in a panic that we had to do this. I finally talked him out of it and told him to push his red button for Melissa to come in and to tell her he was ready to go to sleep. He said he would do that and she hasn't called me back so he must be ok.

It's really noisy here tonight. I guess that's what happens when a lot of college kids live around you. Some of the fireworks they have shouldn't have been sold to the public. And they are shooting them in the parking lot with all of the cars around. I'm also sure they won't clean things up. I just home none of the cars are damaged, especially mine!

All for tonight. I'll let you know how the check-up goes tomorrow. Happy 4th everyone!

Tuesday, July 3, 2012

Bill was up and waiting in the lobby by the nurses station when I got there this morning! His nurse told me that he told her he just had to get out of that room! We went back in and got partially dressed by the time Lisa came in to dress him. He had shaved and had his shirt on and buttoned. All she had to do was his bottom half and his shoes.

He had some pudding with speech therapy as soon as he was done and then he went straight to physical therapy. He was pretty pooped by then and came back to his room to rest for awhle. Then it was off to OT with Linda who was very pleased that he had buttoned his shirt. He practiced more of that with her and strung some beads and started to make a potholder. All of those things seem simple and juvenile, until you stop and think that he has a hard time still with fine motor skills and motor planning. He also powered his wheelchair by himself most of the time. He does fine on the hard floors, but has trouble with carpet.

After OT JoEllen the speech pathologist came back in bearing a gift. He actually got to eat about 1/2 a bowl of cream soup and it was the first thing he said tasted good. He also fed himself and wasn't too shaky. His anti-rejection meds cause tremors so soup is a challenge without adding a stroke on top of it.

He has gotten the idea in his head that when he goes to the dr this week and again for the biopsy that there's going to be an operation to fix his throat and breathing so that he can eat again. We've tried telling him that there are no more operations or procedures and that the biopsy is for his heart. We've told him that the only way to fix it is for him to work really hard.

Again, meds were on time tonight and food hooked up only a little late, but that was our fault. He wanted to go outside for a bit before having to settle in for the night.

He's still wanting us to plan a trip somewhere so we're going to do that in the next few days just to give us something to do. Linda also wants him to start doing his word search puzzles again and checking his email. I'm not going to bring his laptop to him since it weighs a ton, but there is a computer he can use to do that. We also have to get another tray table for his room. The one that's in there is being used by the nurses for all of his gtube supplies so he has nothing to use to practice some of the things Linda wants him to do. But, she said that we should be able to get another one.

So, it was another good day with progress made. We'll see how tomorrow goes.
Sorry for no post last night.

Bill had a good day. He was up and dressed when I got there and in a very good mood. We talked to Michele, his physical therapist, about being more aggressive with his therapy. She said it's about as aggressive as it can be right now but she would change some of the exercises to some strengthening ones for his legs. He's been able to stand more without being supported as much which makes him feel more self sufficient. I asked if an order could be written for him to be walked on week-ends and she said yes, but since they cut staff some on week-ends I don't know if it will actually get one.

He did a lot of shoulder work with occupational therapy. They seemed quite sore and he sat with hot towels on his left one for quite awhile. Linda, the therapist, told us that we didn't have to wait for someone to come and help him get out of bed as long as I felt comfortable helping him. So, we practiced moving from the bed to the wheelchair and back. That will help him a lot, especially getting to the bathroom. He still can't do it alone, but we can do it ourselves now.

He got to eat a little more pudding in speech therapy and did his tongue and swallowing exercises. He said that the flavor was too strong so I think he actually got a melted magic cup. The Magic Cup is a frozen concoction that becomes the consistancy of pudding when it melts. It's a dietary supplement and he said they normally taste pretty good. He had them at Mayo when he had the LVAD implant and he had tried it here but it was too cold for his throat.

I wasn't at any of his therapies except for the end of the occupational therapy. I had an errand to run and left when Michele took him to physical and then was back for the end of the OT. But, I had a lunch date during the speech. A classmate from high school and his wife were visiting in Jacksonville for a family wedding and he called to see if we could get together. Our 40th class reunion was held over the week-end and we were both sorry to miss it. So, we had our own mini-reunion and we went to lunch. I hadn't seem them for 15 years and they both looked exactly the same and it was nice catching up with their lives and talking about other classmates. Her mother was there also and she went to high school with my mother and uncle so we were filled in some about them and the family friends I knew growing up.

As Bill and I were taking his morning walk, and waiting for my friends to arrive, he used his arms to propel his wheelchair instead of me pushing him. That was a first and he did pretty well! I keep telling him when I leave that there are to be no wild parties while I'm gone, including wheelchair races! He may not be minding!

I didn't get a chance to talk to Tammie yesterday. She was out most of the day. But, his meds were on time, actually a little early. So, maybe some  "comments" were overheard. It's hard to tell. Also, his nurse from Sunday told me that he did get the correct amount of Prednisone so the order did get entered into the computer. I'm hoping that Dr. Blatt's PA comes in today and we can ask her about the catheter. Bill says he's ready to try to doing that function on his own again. His mind was clear enough that he says he does remember what they have to do if he can't void, but he wants to try again.

His leg looks really good and the sponge is just sitting on top of the wound now because it's gotten very swallow. I'm sure Dr. Agnew will want to see it Thursday and know what the measurements are so maybe the vac will be gone before much longer also. The bandage was changed on his trach stoma and Saral, the nurse, said she thinks it has closed completely, so she didn't dress it again. We'll just keep it clean and watch it for a couple of days.

All in all a good day with progress made. Today will be lighter since there won't be a dressing change.

Sunday, July 1, 2012

After a gloomy morning, Bill had a pretty good afternoon. He was very emotional this morning and then beligerent about doing his swallowing exercises. He's determined that the only way he is going to do them is with food, even though he knows that he won't get any food until he proves that he can swallow without aspirating. He used every argument in the book on why he won't do them. And then, all of a sudden, he said he knew he had to do them to get some food! I went to Walmart this afternoon and got a flip chart and some markers and a calendar. Put his upcoming appointments on the calendar along with dates I knew for company coming. We used the first page of the flip chart for goals. I then used a page for each of the exercises because reading them off the sheet of paper made him think that it would take forever. Of course his analytical mind started doing the math, partway. One exercise is to hold a falsetto EEEE for 8 seconds and repeat 5 times. He kept saying that's 40 seconds! I agreed and told him that the exercise was over in less than a minute. Then he said but you have to repeat it 2-3 times. And I told him that it would all be over in less than 5 minutes. We figured that all of the exercises, done back to back, with the proper number of repeats would only take an hour total. Then, he said, "That's a lot of time"! So I asked him what he was doing with all his time and he said arguing with me!

He did finally do some of his OT exercises this afternoon in the room, but still no swallows. He wants to move more than he's been able to and I think we're going to talk to the PT therapist tomorrow about doing more leg strengthening exercises and walking more.

His meds were given on time tonight and his food was started on time. In the morning I'm going to copy my notes to give to Tammy about the mix-up this week-end. And I was talking with the day nurse about his anti-rejection meds and commented that his Prenisone had been lowered twice. She said yes, that it was at 20mg. But, it's supposed to be at 15mg. So, I need to check tomorrow to see just what dosage they are giving him. It was changed Tuesday after he had his biopsy. And I know they got the change because the nurse came in and told me that Stephanie had called with it. So, I need to see what is in the computer.

All in all it was a decent day and I got to come home at a decent time and relax for a little whle, although I'm doing his laundry. His feeding tube either got disconnected in the night or they made a mess flushing it but he has "food" all over the shirt he had on and his favorite blanket. Hopefully it will come out. It's about like baby formula so I'm hoping Oxyclean will work.
Still tired and don't feel real well. Extreme weather changes play havoc with my allergies and breathing.! Anyway, I'll be OK, just takes time. Plus, people knocking on the WRONG door (mine) in the middle of the night and again early this morning. Don and Shirley said it happened while they were here but I didn't hear it then.

We were both not feeling well yesterday, both with diahrea, and we were both tired all morning. You can't say we don't do things together!  Bill didn't want to do anything but sleep. I finally came home for a few hours to do laundry and rest some myself. When I got back he had forgotten where I was and was in panic mode. The nurse was looking for my phone number, which she finally brought in after I had been back for an hour! Then we didn't see her at all the rest of the day! Bill was also very emotional all afternoon, which goes along with the stroke and his circumstances. He's doesn't think that he's getting any better and he realizes just how weak he is. Of course he also thinks that being able to eat will solve all the problems. I think therapy is going to have to get really aggressive now and really push him, or he's going to decide it's not worth it and just stop trying. So, another meeting to ask for this week.

I had high hopes for the meds last night. The nurse stood outside his room with the medicine cart from 5:15 until 5:45...then pushed it away! At 8 I finally went looking for a nurse, any nurse, to see what was going on. Found his overnight nurse from last night and asked when he was going to get the meds. She said the computer was down and she could only do the meds for patients that were her regular patients because she knew what they got. So, I told her what the 6 pm meds were. I have to give her credit she was there with them in 10 minutes, and then SHE got upset because his food still hadn't been hooked up again at the right time.

On week-ends, I think they just have part-time nurses. I know there were only 2 CNAs for each shift all day, which doesn't make much sense since the patients don't disappear overnight, or at least as a general rule! The day nurse we had, who was just competent, got off at 4. The one that replaced her only worked until 7 and she never came into his room. If she's hired to just do meds for 3 or 4 hours, she should be able to accomplish that for 22 patients. Or, that would be my thinking if she's not supposed to do anything else.

So now I don't just have random notes, I have all of the nurses names, except for the phantom one, and I can get that. But there will be a phone call to Stephanie tomorrow morning and, since the unit manager's office is directly across the hall from Bill's room, I can see when she's in her office. Spent a long time on the phone with Mary-Rose last night and got some things from her to go over with Tammy. Again, we're back at the point that I'm concerned that Bill will be the one who suffers from this. But, it can't continue.