Below I have entered in chronological order the notes I sent in repose to email I received, and some that I just sent to keep family informed. Here are repeats, because on a particular day I sent a similar email to different people.
I keep reading on the internet. Extubation was last night’s topic. I learned that to get extubated all he has to do is cough. I wish I knew somebody who knew everything; I may be worrying about me more than Jim. Will I do the right things, be there at the right time, act the proper way, and not get into anybody’s way? Can I find a place to sleep at night with him or between his legs. Will I be frustrated by the intubation? Will I be frustrated by his confusion or sedation? Will I feel abandoned or rejected?
I called the number you gave me and got the recorder so I left a message to “call your Dad” but so far nobody has called. I can’t really tell him to call because he
doesn’t know I emailed you so I can’t give him the number to call. However, you can email him at
sawhorse@atlantic.net with the news you gave me about the kids. I don’t want to do anything to upset him this close to surgery. In the hospital today the admitting nurses asked him how long he had been taking Paxil and his was reply was “since my son died” and then the started crying. I believe at least some of this emotional tenderness is related to his Paxil withdrawal. Since he lost his
2 weeks ago had therefore gone off it “cold turkey”, so to speak A google search for Paxil withdrawal will tell you it is not a pleasant experience. He is beginning to realize that part of his heart
problems are really Paxil withdrawal symptoms.
1/16
Aaron and I were there yesterday as much as we were allowed, maybe more. We left at 10 last night. They extubated him around 930 pm. I called at 4 am and he was sitting in a chair, but he still isn’t talking, He does not remember us being there. He will leave ICU today. Aaron and I will go back around 9 am.
We left Jim at 10:30 last night. He had the intubation tube removed, and was making shortappropriate responses. I called to check at 4 am, and he was sitting up, didn’t remember Aaron and I had been there, but did know our names, but he had no idea where he was or why he hurt . They are doing a cat scan this morning to check for possible stroke. Last night he was raising his left arm and leg but not his right arm or leg. At 6:55 I remembered that it was the right arm he was using yesterday afternoon when he was tying to pull out his tube so I called the nurse to remind her that he was using his right arm. Aaron and I will be going up aroud 9:30. I’ve been up since 3 am.
I talked to Trudy on the cell phone in the hospital today around noon. Jim still does not recognize us. His longest
sentence is 4 words long. I skipped the 4-6 visiting hour today hoping perhaps that the greater time interval will produce better results, and to get some sleep. Our branch president came today and gave him a blessing. He knew we were there only because my visiting teacher, who had sat with me waiting Thursday, and told him. The branch president and his wife just had a baby, and make frequent trips to the hospital because their baby is jaundice.
It hurts to go up there and look him square in the eye and tell him I love him and get a quizzical look in return. He looks at Aaron and me like we are strangers. I don't know why Trudy or Greta would want to experience that. I don't expect a great deal of improvement in the next few days.
They moved him one room over, from 7 to 8. They did a cat scan at 1, and I will get the results when I go up tonight. It is important for him to get some food into
his stomach, and seems to be up to me to do that. I got him to take some tomato soup through a straw, and bought a lollipop he wouldn't touch. I am going to try banana milkshake tonight. The straw seems to be the preferred vehicle of introduction. Maybe tiny bits of his favorite apple.
We just got back from evening visiting hours. We took the banana milkshake and an apple he had previously picked out and bought. He ate some small bits of apple and quite a
few sips of milkshake after we thinned it with water. His right side is still weak, but cat scan ruled out stroke. The doctor will call me tomorrow to explain what this implies.
We are now into conflict with Aaron’s work schedule. Tomorrow I will drive to the hospital at 8 and stay till 9:45, then drive home and take Aaron to work by 11. Visiting hours start
again at 1 so I may drive up again, but the car does not do well at night so I may not go up at night unless I can get Sam or Joel to take me, in which case I wouldn’t stay long because they would get bored. You recall Joel – he gave the prayer at the hospital when Nathan died. Highlight of the evening: I
asked who am I ? He didn’t know. Are you married?
He said yes. I asked him if he knew his wife’s name. He said Sandy. Then I said, well, I’m Sandy. He said oh.
They said they got Jim up and walking from the bed to chair but he gave them no help (and he’s big) so I think they gave up. When I go in he is in either the big chair or in the bed. They keep giving him morphine and darvacet. Perhaps this is what is keeping him confused. I don’t know if this will resolve itself or if I should work on making him remember things, starting with who I am.
So, what are you doing up at 4 am? I though I was the only one. I went to bed last night at midnight, and got up at 2 and started updating my page. I have to wait until 3
to get PointPool. Well, there was a difference today. The nurse and I agreed that Jim was getting way too much pain medication and as a result could never really show his true identity. So we decided to stop the pain medication to see what would happen. Meanwhile, it was pretty much decided that he had an ischemic or TIA stroke which had weekend his right side. He showed all the right symptoms.
First, I want to thank you all for your prayers and you email support. I don't get much support at home, I'm kinda of loner, so I really appreciate getting up or coming home and finding your emails. I did get some sleep last night; about 6 hours. I did all my weeping before bed this time so I had a dry pillow for a change. Anyway, for those who haven't heard, Jim came out of his stupor when a nurse decided to hold off meds because she wasn't sure how medicated he was. His reaction was to come out violently. Their reaction was to give him Haldol, which put him back to sleep. I am going to see the doctor today and suggest that his system be allowed to detox so maybe I can see maybe a little part of who my husband really is and where he stands in a brain kind of way So, about 2 hours later the pain med had worn off and Jim took off. He got wild. He was hitting me in the legs with his left hand and trying to tear off my watch .Then he would squeeze my hand as hard as he could. All the while he is cursing and making threats,
and he had a mean, hateful look on his face. A nurse came in to help, then another. Just then his surgeon peeked in peeked in. I had Jim’s hand secured between my legs, and I looked up and said to the surgeon “isn’t this great –
he’s not just lying there anymore.” The surgeon smiled and shook his head in agreement. The nurses were no so happy. Then he started arching his back so
his chair was almost horizontal and they were afraid he would tip over onto his head so they decided to move him back into the bed. It took three nurses and the doctor to slide him off his chair and into his bed. Well, first they have him a
shot of Haldol. I really wish they hadn’t done that, because then he turned back into a bed potato. He went to sleep and I
drove home in the daylight, barely. Well, he also said my name
when I asked him if he knew who I was. That was a first, also.
1/19
I went to the hospital this morning at 9 (I was told I come early) but when I got there Jim was down for a “renal
scan”. Seems his kidneys were affected, probably by those darn emboli. I don’t know how he got back to his room without passing my watch guard, but soon
I was called in – and Joel and his son were with me. Darn that Jim, he greeted us just as if nothing had happened. The there of us talked awhile then after Joel and Russ left Jim and I talked. His first question was “am I going to die”. I said of course not. Then he asked what day it was, and he started counting back to Thursday and this is when he realized he was out of it since
Thursday. Later that morning he got a little crazy by picking a word and applying it to everything he said. The first word was fart and the second word was game. Then he started chewing in this oxygen piece that goes into the nose. Then he napped and I grabbed an expensive hamburger from the cafeteria. He straightened out after his nap and I asked him his name, my name, Aaron’s
name, the dog’s name and the cat’s name. He stumbled on the cat’s name, but that is a tough one since we call her cat. He had no idea where he lived, the address or zip code, and he didn’t know his phone number. He did know that
Aaron worked at Wal-Mart. The doctor came in and I told him he’d have to introduce himself since Jim would have no idea who he was. So he did. Then I talked to the doctor about a screen that catches emboli and he told me that 1)
It would have to be inserted by a catheter via artery from the groin, and Medicare barely pays for everything now, and 2) to be removed the aorta would have to be opened, and then closed, which closure in itself would be a hazard for producing a stoke. Do I have you confused now? Jim is still confused about why he is in the hospital. I explained to him about his new heart, but it didn’t seem to want to accept that. I’ll work on that more tomorro.
During Jim’s next nap I went around the corner and down the hall to find the White family who had surgery the same day (so we waited in the waiting room and got to be friends). We also went through the admission process together. Anyway, we are one of the few people
there who know Jim and Reg as they were before surgery, so it’s a special relationship. My point in telling you this is to
explain why I went visiting. While I was there he told me he was seeing hot and cold faucets over the mirror in his room. But he’s walking and watching tv and talking sensibly. So, all sorts of strange things can happen. I think I convinced him to use his right hand more and to use his breathing machine more. I put the bear I took
him yesterday and put his mouth in front of the machine to remind him to do it, and I put the cart by his chair. I called Sam and he came and got me and took me home. The Doctor said he might be transferred over to where Reg is now 4-1
nurses instead of 1-1 in ICU. He was not allowed to eat or drink today because he is getting a swallow test tomorrow morning. The renal doctor came in and said his kidneys were getting better.
I left Jim with a cloth from home to wipe his mouth, the bear and breathing machine on his table, and a note with his nurse to turn on Imus in the morning on MSNBC at 7 am.
Yesterday when I got there Jim knew who I was. It was like he never left. He was surprised to hear it was Sunday. He knew people, but he didn't know his address, phone number or why he was there. When I mentioned a new heart he looked at me like I was crazy. He had an afternoon episode of taking crazy but he took a nap and went back to what is now normal. He had d a kidney scan, and the doctor came in to report that had shown improvement. Today he has a Videofluoroscopic Swallow Evaluation. He couldn't eat or drink yesterday for fear of aspiration and resulting pneumonia. When his surgeon came in again, I had to remind him that Jim didn't know who he was. He is using his right (stoke) side arm much more. I put a wet washcloth on his right hand chair arm and he used his right arm to wipe his mouth all the time. His surgeon said he may move into the non-ICU where nurse staffs 1-4 instead of 1-1. I'm going up at 11. Transportation is getting bad now that Aaron has gone back to work. Aaron works 3-11, so he can get me there, but I have to find a way home. In non-ICU I can stay overnight, and I'm thinking maybe I'll take one computer up there so I can do my work.
After suffering though yesterday with Jim on a no food-no water diet pending a swallow test, I found him just finishing a full breakfast. I asked if he had had the swallow test and he said no, so I am instantly confused, and pissed off.
Okay, so I move on. It’s moving day from ICU to non-ICU, so they come in to move Jim from bed to chair. Aaron and I are asked to step outside, then suddenly a big curtain is drawn across the windows (which are the doors). I am instantly offended. Without a second’s hesitation I throw back the curtains and lay into the nurse. First about
separating me from my husband by a curtain and then about the full meal when a swallow test was expected. Once moved, he is again asked to order lunch. He was also given a pitcher full of water. Half way through lunch they came to get him for the swallow test. He wasn’t gone 5 minutes when Trudy and Jordan arrived. So Trudy, Jordan and I talked for 45
minutes, then Jim came back, thoroughly exhausted. His lunch was now cold, so it was abandoned (well, I ate the green beans and grapes and a piece of chicken). The swallow test showed a problem. Now he can only drink thick
liquids. He can have water, but it has to be thickened. Trudy and Jordan stayed awhile, we all took pictures, and they left.
This is the first day Jim has used a walker to get from chair to bathroom, and back. The second time he and I did it all by ourselves. He could walk more, but he gets all out of breath just going from chair to bathroom.
The nurse came in with a pill and I asked her what it was. She said Paxil. I
said he didn’t want that, and wondered why a doctor would prescribe it. It takes a week or two of use just to kick in, and he just came off Paxil a week before his surgery. She said, okay, we could refuse it. Then later Jim asked what happened to his Paxil, and I reminded him he didn’t want it, and he said, oh, yeah. So now
it’s dinner time, and I call in dinner – turkey sandwich and mushroom soup – nice thick things. The man says, sorry, his diet says full liquid only. So I called the nurse, who corrected the front desk, then called the kitchen man
back and Jim got his turkey sandwich on wheat and mushroom soup.
Tomorrow he gets all his chest leads off and gets a shower. I was denied my request to be the one who
gave him his shower.
Now, Jim had his surgery the same day as Reg and I was over visiting them when
their cardiologist came in. Reg gas the same water retention problem Jim has. His doctor said that
natrotol (I really have no idea how this is spelled or pronounced) was ten times better than Lasix. And, according to
1/13
I got the book Cold Mountain to read to him in the hospital. We started, so we can get into it by Thursday.
Today we go to the hospital at 8:30 to register and get blood tests and new EKG. Then they tell us when we are scheduled tomorrow for surgery. It could be as early as 4 am. Peter Principal took over last night. We spilled water on my keyboard which caused it to dysfunction this morning. First thing this morning I coughed and wet my pajamas, Then, I knocked my cereal of onto the floor and
computer and bathrobe so I replaced the keyboard and I did laundry. Then I got dressed and a bubblegum wrapper fell out of my underwear. I don’t use bubblegum. I got up at 3 to get my noon work done before we leave in case we
don’t get back. Tonight I will go to bed around 6 and get up at midnight. I guess I can sleep in the hospital.
We were told to call the hospital tonight at 7:30 to see what time he goes in tomorrow, It will be somewhere between 4 and 8 am. We have to be at the hospital at 5:30 am. I will see Jim while he is still asleep, then have to wait for visiting hours to go back. His room in his non ICU has
a bed for me. He will be in ICU maybe 2 days. They say people change after these surgeries. Some have strokes on the table.
Sunday January 18
The physical therapy man came in next. He did a physical evaluation, and then he asked him questions.
He was told three words, then after a brief conversation about other things, was asked to repeat those three words. He had no idea what they were. He got the place and month correct, but he said the year was 1994. When the man said
off by 10 years, it was 2004, Jim looked at me and said “really”” He was asked to count backward from 200 by 7’s and he got to 100-14. This is a man who can
go grocery shipping, have everything added up in his head and have the exact correct amount of money ready, including tax to hand to the cashier. The man talked about rehab after discharge. After he left I tried some questions. How
old am I – his first guess was 70, then 80. Oh, dear. When it came to Aaron he gave up trying. So, we still have some problems there.
This
website http://www.steroids.com/Lasix.htm
and has many side effects including potassium loss, and cardiac arrest.
Natranol has none. So I asked the nurse about
switching to Natronol (which I can’t find on the internet). And she asked where I came up with that so I pointed to the doctor who had said that and after he figured out that I was in the wrong room when I heard that and that my husband was across the hall, he gave me some spiel about
one medicine that good for one person isn’t necessarily good for another. Well, I figured, it was worth a try just because of the side effects, so I asked to see the doctor, but my ride came before I ever got to see him. A code red went off around
6:30, a fire I guess, the strobe lights flashed in all the rooms and the came and shut all the doors. Jim slept through it all. My ride came around 7:30 so
now I’m home. Aaron gets off at 11 and if he would drive me up there I would go and spend the night
After an absolutely psychotic night last night I left this morning, went home, showered, ate, did my internet work, slept and returned at 3:30. I met the rehabilitation team, and
leaned the exercises from the speech therapist and physical therapist.
Last night Jim was in high anxiety mode. He hobbled back and forth between bed and chair no less than 25 times that night. He was never happy where he was. IN bed, I laid beside him with my head on his shoulder and his hand in mine, but even that did not appease him. I was in that position when the PA came in to remove his stitches. There
were my eyes on his shoulder watching the stitches and other things come out of and off his chest. The PA just ignored me. Before that, at 4 am, Jim was sitting on the bed with his legs hanging over, his head resting on my breasts
and we rocked back and forth, when in came the blood collection man. Jim never took his head off my breasts during the blood collection process. At 6 am I asked if he wanted to shave and he said yes, so we hobbled him into the bathroom
to a chair in front of the sink and he shaved. Then he got into the shower and I soon realized he didn’t have a towel, so I had to go to the nurse and ask for one. She said “I don’t know what all you’re doing in there so I brought you everything - towels, gown, and slippers.
The nurses brought in a babysitter while I went home. When I returned I spoke with the dietitian. I was pleasant and cordial (are those synonyms?)but I knew there was no way in hell I was ever going to keep him on a diet like that. He has tongue and vocal exercises to do that will improve his swallow. But as
much as he complains about the thickening of his liquids you would think he would do the exercises so he could improve his swallowing and be able to drink water again. But no, he won’t do his speech lessons or his physical exercise.
As I sat there on the couch next to his chair he dozed (something I wished I could have done the previous
night). I offered to read to him from our book, and he said no. I brought him lots of flannel type pajama bottoms and his garment bottoms so when he went walking (hopefully with me, when we got permission) he wouldn’t expose himself. So when somebody came to take him for his walk, I suggested he put on the garment bottoms I guess I have a peeve about seeing men in gowns walking with
the asses showing. So I reminded him that he had his garment bottoms. He just ignored me and went off with the woman who took him to walk. I never was given permission walk with him. I was always told his lungs were not ready for
walking. So, I walked out. I called Aaron and he came and got me. I told Jim to call me when he was ready to
discharge, and if needed I would take him to rehab.
Jim called me later, saying he was having a bad time and needed me. If he had just pleaded we me to stay as I stormed off to the elevator ahead of his walker, but his didn’t. If he had just asked if his wife could walk with him instead of the nurse. If he had just put on the garment bottom. If he had shown some sort of gratitude for e having gone 27 hours without sleep so I could rock him though the night. It didn’t
happen. So maybe I’ll call him after I send this and tell him why I abandoned him.
Because the surgery led to stoke, kidney problems and swallowing problems, and because Jim is lackadaisical when it comes to doing his prescribed exercises to correct
these problems, I have decided to put him into a rehab center for two weeks. It got so bad yesterday that I walked out on him, telling him that I wasn’t coming back, and he shouldn’t consider coming home until he decided to make some improvements. He called me back and asked me to stay the night again, as I have
been since getting out of ICU. I’m going to make a web page of all my experiences. It will make people considering open heart surgery aware of the complications other web sites just mention in passing.
I decided to put Jim into a rehab center for 2 weeks. He will go directly and live there. I can visit 8 am
to 8 pm. I have been spending nights with Jim. I am amazed that I am handling this situation so efficiently. Yesterday, when I called Aaron to come and get me, he didn’t ask why, but assumed I had been kicked out of the hospital. After days of bumming rides, I
found Laura’s mother, who works there and ride with her in at 5:30 pm, home at 7:30 am. I only “blew up” at one nurse, both Jim and Aaron witnessed it, felt my rage was appropriate, and Aaron figured she would have to go home and have a stiff drink after tangling with me.
I have decided to put Jim in a rehab center for two weeks. He will go directly. I can visit 8 am to 8 pm.
Having garment problems. Nurse put on pant in the microwave and burned it in places. Joel is getting 4 more. Waiting now for ride to hospital at 5:30 to spend another night.
Jim as moved from hospital to rehab center yesterday at 11:30 am. His new phone number is 352-323-2335
It’s hard to say how he’s doing. His memory comes and goes, worse 2 am to 5 am. He hates the rehab center, so he is being discharged Sunday morning. He will have home health care to read oxygen levels and take blood samples taken, daily at first. I
wanted to talk to Trudy about this but when I called the number you gave, and which I called before, it said it was out of service. My cell is 352-255-8506.
I am going to the rehab center tonight to spend the night. Seems once a nursing staff has Jim for one
night, they always want me to come and stay overnight with him
He came home Sunday but they sent no pain med so by night he was frantic. I ended up taking him back Monday at 1 am. I left him to his rehab therapies around 8 am, and at around 5:00 they called to say he had been taken by ambulance to the emergency room. I raced up there and he was still waiting to be seen. Around 6:30 he got a cubby and I stayed with him while they did numerous tests and gave him 2
kinds of antibiotics by IV. At 11 they transferred him to a cubby with a tv, but no recliner chair, which he needs to sleep, Realizing this situation I left him with his tv
and headed home to sleep. I finished Milesource and
half a lightening round when the power went out, and when it came back I couldn’t get a connection so I went to bed. At 3:45 am the hospital called to say he had a room on Cardiac medical. At 4 am Jim called to say he thought he
would finally get some sleep. Well, now I’m up and I have a connection so I think I’ll start my work in case things happen later this morning. Right now
the verdict is pneumonia.
I brought Jim home Sunday morning but they sent no pain meds with him so I ended taking him back early Monday morning. Monday afternoon after therapy he was breathing hard and had chest pain so they took him by ambulance t the emergency room. That was a nightmare. I left at 11:30 pm. At 4 am the hospital called to say her had a real room. Five minutes later Jim called to say he might finally get some sleep. He is in room 3000 A on cardiac medical. I guess I’ll see him at 11 when visiting hours start unless he manages to insist they let me in earlier. We
should see the heart doctors this morning.
Jim was taken by ambulance from rehab to emergency room with sweat, shortness of breathe and heart pain. ER till
3:30, then to a regular room. Antibiotics by IV, they believe
pneumonia. Dr. came by but lung scan report was not
yet in. Said Jim looked good and should return to rehab shortly.
I’m off at 4:15 for the hospital. We are negotiating
a rehab change. Jim called and sounded chipper. I crashed and had a two hour nap. Man at the door woke me up.
I had planned on outpatient therapy but the doctor wrote inpatient on the order for release form Cardiac medical. The nursing center we wanted was filled so we had to pick another one. We got there 4:30 pm last night, after a tough day and me fighting to get him home for a shower and change at home before delivering him. It worked. Once there, there was only a bed. He looked frantic; I said “he doesn’t do beds”.
Eventually they brought in a fine recliner and I settled him in and promised I’d be there between 9 and 10, well, it’s 10:40 and I still haven’t left. I got up at 4, did some internet work, realized I was still sleepy so went back to bed
and slept until 8. Then laundry, dishes and packing him some more stuff. I am having trouble with sleeping and eating. I have lost 7 pounds in the last 14 days. I am short on money, having most of what I had for food go to gas. This nursing center is somewhat closer, but not by much. We always watch tv Friday nights 10—11 so I’ll write again tomorrow with what I learn today.
2/2
I feel like a tool for Jim. He uses me and uses me, no hugs, no external emotion. I talked to the charge nurse and the doctor’s PA and expressed my feeling that Jim was ready for outpatient therapy. There is nothing medical about him that can improve with inpatient care. Then the floor nurse came to me and said Jim was a long from ready to leave the nursing center. But it a know fact that I can sign him out any time I want to.
We have the Escort back now, returned the borrow car, and are in the process of transferring over plates and insurance to it. I had lunch with Joel today then came back and Jim was having his lunch, then he decided we had a lot to do so I should check him out. I checked him out at 1 pm and then I learned he had no intention of going back until tomorrow morning. So I stopped off at Langley to see if they had filled the prescriptions that the former rehab hospital had called in when we were released to home care, which failed so I took him back Monday and Monday afternoon he was taken by ambulance to the emergency room and then spent 3 days in Cardiac medical. So now he’s in rehab in Wildwood at a place formerly known as We Care. The prescriptions we ready to be picked up. So now I have all his medicine except pain med so I have him my Ketorolac which I had for my very painful knee. He’s not complaining about pain now, but he can’t adjust to the temperature. Up and down it goes. Then I have to put my arm by the wall to see if that is 72 degrees. It’s crazy! I keep threatening to take him back. I suppose we will return to the nursing center sometime tomorrow but we have yet to transfer the plates to the Escort. I guess we will use the sign out method to create the outpatient situation we need.
2/3
I’ve been bringing Jim out for many hours for the last couple of days. Tonight we got a call that his discharge was approved, but the phone connection was so poor I didn’t get details. He has an appointment with his surgeon Wednesday at 10:45. I returned him to his chair (room, but the room doesn’t count; it’s the chair is what matters) at 9:05 even through we had until 11. We got a lazy-boy recliner from Joel that works better than our regular recliner, but not perfect, so we will probably be shopping for a replacement recliner. Jim is able to walk alone now, as in leaving the center to get in the car while I log him out, but when assistance is available he takes advantage of it. They say lengthy surgery can change a personality, and I’m afraid it has done so in Jim’s case. He is a different person, almost like he aged 10 years in 17 days. He seems to have lost all his independence. He was so worried they would make him leave the center without his pain medication, which they say he doesn’t really need. I’ve been trying to change the pain medication around to remove the risk of addiction. When he’s here I give him Ketrolac which is non-narcotic.
2/5
Last Sunday morning I took Jim out of LRMC rehab with the understanding that if things didn’t go well, I could bring him back within 24 hours. Around midnight that night, he decided to go back. I stayed with him awhile, and then came home. Later that afternoon LRMC rehab called to tell me he had been taken to the emergency room by ambulance. I rushed back to Leesburg and met Jim on the stretcher in the hall of the emergency room. I stayed with him all night, but left around 1 am. At 3 am he was transferred to a room, and I found that room at around 8 the next morning. They were IVing him antibiotics, claiming he had pneumonia. He was in cardiac medical for 3 days but he could not go back to LRMC rehab because there were no more beds available. So we called around and found Arbor Village in Wildwood and I brought him home, cleaned him up and took him to Arbor Village The next few days I “checked him out” between or after rehab and we did things, including spending time at home. On Feb 4 I convinced everybody that he would do just as well if not better on an out-patient basis. So he was released and this is his 2nd night at home. He has an appointment with his regular doctor in 2 weeks, and we are going to see if she will write a prescription for outpatient rehab at Osprey Point in Bushnell. It’s much closer than Arbor Village. Jim is far from perfect, but seems to be getting better every day. His vein leg is quite swollen and Lasix does not seem to be helping. He has a hard time finding a comfortable position in his recliner, where he sleeps. He also has a hard time finding things to eat that he feels like eating. He has gas that is not always just gas.
We are shopping for an appliance that will raise the toilet seat 5 inches or so. We would also like to find shoes he could wear, one on the normal foot and one on the swollen foot. His vision was badly damaged by the surgery and he can no longer read a newspaper of magazine. He tires easily. But it’s good to have him home, and it’s nice to not have to drive around at all hours of the day and night, and it’s nice to have time to eat and sleep. We have to have faith that things will continue to improve and we can have at least a few (maybe 10) more years together.
Jim heard our cat meow early this morning, but later we found her dead in our driveway. I buried her next to Tigger. We had her 18 years.
I am learning that Jim is not remembering most of his hospital experience. He practically y begs for his pain medication, and when he doubted I had given him one a few hours ago, he got out a plate and counted them out to see if there were 59 and not 60. There were 57. I think he counted wrong.
This is our second night at home. My visiting teacher brought a church food order to us. Good for me, but since Jim is on a low salt low cholesterol diet, there is little of the packaged and canned foods he can eat.
2/9
We have four doctor’s appointments coming up.
Dr. Richardson (the surgeon) in the 10th
Jim’s major complaints are his vision, back and shoulder pain and mental confusion. He cannot lie down (says he can’t breathe) and he finds it difficult to sleep in his chair).
At times I feel as if am caring for a 3 year old. I have to dress him, tuck him in, and bring him things to eat (which he hardly ever finishes). I have to lead him though minor decisions. When we go to Wal-Mart I drop him at the door, he finds a cart and sits, I park and come back, then he drives the cart around Wall-Mart. He does not like to be out too long.
We are trying to find a foam wedge so maybe someday he can sit in the bed. I found this page for that: http://www.efoamstore.com/shopcart2/default.asp?id=5
My friend say is going to get the name of the foam store in Ocala tomorrow. He believes they have memory foam. I have also found a pretty good deal at Target, only its just 1&1/2 inches think. I want to line his chair with it so maybe I can even out the stress points that are causing his neck, shoulder and back to hurt so much.
His left leg (the leg they took the vein from) is still quite swollen. He has been taking Lasix to being it down but it has not been doing its job. He also had to take 2 giant potassium pills with the Lasix so we quit taking that yesterday. I have spoken with my friend Brenda who is a chiropractor about helping him with his neck, shoulder and back pain.
The church brought by a food order but Jim is on a low salt low cholesterol diet and I am not into cooking big, so most of what they brought will have to wait. I wish instead they had brought a big foam wedge or a memory foam mattress topper, or a big floppy recliner chair.
Other things he will mention to his doctor:
2/12
We went to the eye doctor this afternoon and he found an embolism logged in one of Jim’s optical nerves. I am a proponent of emboli filters and spoke to his surgeon about this. He seemed to think it was just an added expense and added work. This has strengthened my position. It causes a blank space in one eye, like when you put a pencil touching one eye and then try to read. It won’t get any worse, but it won’t get any better. He got tri focal glasses for $125 which we put on a (the) credit card.
Tomorrow at 9 am he goes to his regular doctor but will see a substitute doctor about his burning penis and swollen leg. There we will also get a chest x-ray for Dr. Richardson. At 2:30 we will go to Dr. Sampong‘s office for an echo of his leg to see if a blood clot is causing the swelling. Tonight a nurse fro Dr. Richardson’s office called to ask about the swelling. Weren’t they paying attention? She said to do whatever I had to do to get his leg about his heart, wrap it in an ace bandage, and restart the Lasix and Potassium. We’re working on it, but we only have 6 more days of Lasix and Potassium and Medicaid will not pay for two prescriptions in a single month. We will mention this to his regular substitute doctor.
Dr. Sperry (the optician) on the 12th
Dr. Bello (the original doctor) on the 13th
Dr. Matir on the 17th (not sure what he/she does, something about the body)
So far we have had no therapy since he left the nursing center. Our release instructions did not include out-patient therapy. However, we plan to ask about a “prescription” to therapy at Osprey Point when we see the correct doctor. It may be Dr. Richardson but probably Dr. Bello. I will ask both.
When he drinks water with a dry throat he gags.
His penis is inflamed
His leg has numb places
Leg is not unswelling
He can read only headlines, not newsprint
I’ll write again after we see Dr. Richardson. Jim is feeling lousy. I am wondering what Medicare or Medicaid will pay for since we need a large foam wedge and a twin size memory foam mattress topper.
