Day Three at Home

It's only Day 3 and I'm already going crazy. Pa took a sleeping pill last night (Restoril). It makes him confused. He kept waking up in the middle of the night. He woke up at 1:20, 2:00, 2:05, 3:00 and 4:30 asking to have his blood pressure checked, take his medicine, and drink some water. It took me a while to figure out that's what he wanted. His speech is very garbled with his dentures out coupled with drowsiness from his pills. I got up at other times, too. He kept kicking off his blanket. Other times I'd hear him move thinking he's about to get up by himself, but he wasn't.

Tonight I put a few chairs against Pa's bed to keep him from getting up by himself. Maybe that will help at night. It won't help during the day though.

Day Two at Home

A home health nurse stopped by today. She knew Pa when she worked at Doctor's Hospital. She managed to get him a prescription for Restoril. He didn't sleep well at all last night (and neither did I). He had been using Vicodin as a sleeping aid, but that probably caused his constipation. So we got him a stool softener. Isa has prune juice for him on her shopping list. The nurse also promised to get us a supply of condom catheters to tide us over till the medical supplier sends us some.

Pa has been sleeping a lot since he got home. He has done very few of the exercises that the therapists gave him to do. I hope that changes that tomorrow.

I cannot get Pa to stop getting up by himself. I tell him over and over again that it's unsafe, but either he's not listening or he can't remember what I say. It's very frustrating. It's only his second day home, but I'm already so tired and want to move back home myself. I've moved in temporarily with Ma and Pa, but I really don't want to be here. This afternoon I fetched my cats. They're limited to the downstairs area while Isa's cats are upstairs.

Pa is Home

Within an hour of coming home, Pa stood up by himself when we weren't looking. You would think the fall last night would have taught him that doing things by himself s not a good idea, but no. He sometimes tips over to the right when standing up and can't correct himself. He walks too fast. He keeps bumping into things on his right because he doesn't look to his right even when being constantly reminded.

This afternoon he slept uninterrupted for 4-5 hours. He stayed awake for two hours, just long enough to eat dinner, brush his teeth and watch a little TV. He's in bed now snoring. I have to feed him through his feeding tube at 10pm. I hope he wakes up late so I can catch up on my sleep.

Early Morning Drama

I got one of those middle of the night phone calls. Pa fell out of bed. He was trying to reach for something, lost his balance, and slid out of bed. He wasn't hurt, thank goodness. But I hope this shows him it's still unsafe for him to do things on his own.

Turnaround

Today Pa was like a new man, almost like his old self again. He was asking me all kinds of questions when I arrived this morning. All the therapists noticed that he was more animated. He didn't eat much at lunch, but he ate almost everything on his plate at dinner. That's a huge improvement. I think what made the difference is Remeron, the antidepressant he was given last night.

We have to watch him carefully now. He's become overconfident. He walks too fast with his walker and doesn't wait for someone to accompany him. When he first arrived at rehab, he was given a balance test and scored 19 out of 48. Today it was 28 out of 48. While an improvement, he's still in danger of falling.

He was also given Ditropan for his bladder, and that seems to have made a difference in how often he has to pee.

Electrical Stimulation

Yesterday afternoon one of the occupational therapists did electrical stimulation on Pa's arm to stimulate his nerves. The session was to help him open and close his hand. Pa is too sensitive to the electricity, so the therapist couldn't go too high on the voltage. Today he'll work Pa's middle, ring and little fingers. They don't move as much as his thumb and index fingers. He does have a little movement on all his fingers, but he's a long ways off from being able to play the piano again.

I put on Pa's condom catheter last night. There's just something wrong about putting a condom on your own father. This version has an opening at the end where you insert a tube that goes into a urine collection bag.

Training Isa

Tonight the nurse showed Isa how to use Pa's feeding tube to give him food and medicine. Last week she was freaking out about it, but she did just fine tonight. She used a syringe to give him his crushed tablets mixed with water. Then she used the feed bag to give him his liquid nutrition.

Because of the stroke, Pa has been peeing a lot, especially in the evening. We decided that he'll use what's called a condom catheter when he gets home. It's basically an external catheter that goes on like a condom and lets you urinate into a bag. It will help him sleep through the night rather than every hour or so because he has to pee. The nurse assistant had us watch tonight when she put it on Pa. Tomorrow night I'll make sure Isa actually does it, then I'll do it the following evening. Again, I thought Isa would freak out about it, but she didn't. That's a relief because now there'll be two of us who can do the things that Pa needs.

Right Hand

Pa has been eating with his left hand. The occupational therapist wants him to start using his right hand. She gave us a piece of foam where you can insert a spoon. Pa can hold it in his fist, like a little kid, and use it to feed himself. He has to learn how to bend his wrist the right way to scoop up the food, lift the spoon to his mouth, and turn his wrist in a different direction so that the spoon enters his mouth the right way. He doesn't want to do it because he says the food will just fall back on his plate or his lap. But yesterday we did it together. I closed my hand over his fist and turned his wrist the right way so that he can feed himself without the food falling off. I think I'll keep doing that for several days till he learns it. The important thing he has to do is to watch what his hand so that his brain registers what he's doing.

Extended Stay Approved

We finally received word this afternoon that Pa's insurance company approved another week of stay at the hospital. His new release date is May 29. So today he received his usual dose of physical, occupational and speech therapy.

Pa ate a bit more than usual at lunch. He seems to prefer pureed food. But at dinner he barely ate anything. He didn't even drink his Glucerna (Ensure). He usually drinks at least some of that.
I've learned to do Pa's feedings. Some of the nurses prefer using a feed bag like an IV drip (the slow method), and others prefer using a fat syringe where you pour the can of liquid nutrition into it (the fast method). I did both methods today. It doesn't seem to make any difference to Pa's digestive system which method you use. I think Pa prefers the fast method because the sooner it's done, the sooner he can recline comfortably and go to sleep.

Pa had been receiving electric shock therapy on his face to wake up his nerves. But he found the treatment too painful and opted to stop it. Maybe he can replace it with acupuncture. I do ice therapy on his face when I remember. The speech therapist doesn't do it every time she sees him.

Right Neglect

As a result of the stroke, Pa has a condition called right neglect. He forgets about his right side and has to be constantly reminded about it. When walking, the physical therapist is training him to look to his right every five seconds. Otherwise, he'll bump into things on his right. When getting dressed, he acts as if his right arm is paralyzed and has to be reminded that he can put his right arm through his shirt sleeve. He doesn't look at people when talking to them and has to be constantly reminded about it.

Yesterday afternoon a researcher from the neuropsychology dept. at UC Berkeley stopped by to do a test. It was mostly visual and measured how much neglect Pa has. The right neglect was quite substantial compared to the left. The researcher said she may call later on to see if Pa is interested in a study that will might make a significant improvement in his right neglect.

Dr. Hsu, the doctor who's been covering for Pa and is also Ma & Pa's primary physician, stopped by to visit. He had just found out that Pa had a stroke. He was very nice and offered to cover for Pa for at least another month. Dr. Hsu also does acupuncture, and this is something we're interested in pursuing to see if it speeds up Pa's recovery. We will see Dr. Hsu as soon as Pa goes home. We haven't heard yet if the insurance company approved the request to have him stay another week, but I'm going under the assumption that it has.

Kit flew back to Switzerland yesterday. She'd been here since the day before Pa's surgery.

Training Day

This morning the therapists trained us (Ma, Isa, Tito Lum and me) how to take care of Pa once he's home. They showed us how to help him in and out of bed and how to assist him when he walks. Pa has some use of his right hand and arm, so we have to remind him to use them when dressing and washing up and not be tempted to do things for him. Buttoning up his shirt may take longer than usual using his left hand, but he can do it himself. We also have to remind him to speak slowly and loudly, and to eat small bites and drink small sips of liquids instead of gulping them down.

The nurse showed me how to feed Pa through his feeding tube. Isa and Tito Lum are too squeamish to do it. But maybe I can train Ma. Or maybe Pa can do the work himself with some assistance from Ma.

Pa is supposed to be released on Friday, but the hospital is working to get it extended for another week. We could know by tomorrow if the insurance company approves it. I really don't think he's quite ready to be sent home.

Another development is that Pa will need 24-hour supervision once he's at home. He's not progressing as fast as the therapists had hoped. But he will get home health care for a while, maybe a month, before progressing to outpatient therapy. A nurse and therapists (speech, physical & occupational) will come to the house to work on Pa.

One of the nurse assistants checked my blood pressure and Ma's and Kit's. They were all high, around 140/80. Aack! Only Pa had normal blood pressure. I couldn't go to the hospital Monday because I was feeling sick from my high BP. Ma had high BP that evening, too, and she stayed home yesterday. Kit has no symptoms.

Sense of Balance

The physical therapist has been working on Pa's sense of balance. He's learning to shift his weight when taking a step forward and back. When he starts to lose his balance, he doesn't automatically correct himself to keep from falling, so they're working on that. When I'm with him and he leans too far to the right, all I have to do is nudge him a bit to get him straight again. This morning when he started to lose his balance, he actually moved his leg to try to correct himself, so that's an improvement. It actually made it a little harder for me to assist him. But I didn't let him fall, so that's good.

Kit and I have been trained to assist Pa in and out of bed and onto his wheelchair and also to/from the toilet. We haven't dropped him yet.

Weight Loss

When Pa first entered the hospital, he weighed 136 lbs. A week later when he was transferred to Herrick, he was down to 120 lbs. We thought at first there was something wrong with the scale, but I think they weighed him a second time, and it was the same. This morning he was up to 122.3 lbs.

Pa still isn't eating much because he has no appetite. Last night he ate 1/8 of an egg salad sandwich, a little broth from his chicken noodle soup, and a few spoonfuls of chocolate pudding. But he drank about 7 oz. of Glucerna (Ensure), so that's a big improvement. I'm sure the Glucerna alone fills him up. I added a packet of Benefiber to the liquid so that he gets some fiber. Good thing they include Benefiber in his tray.

I ate the rest of his egg salad sandwich and chocolate pudding. No sense in letting them go to waste. They were actually quite good for hospital food. I had to explain to the nurse that Pa didn't eat all that food; I did.

Sample Physical Therapy Session

Here's what Pa did in physical therapy today. First the therapist had him walk with a walker. Pa has to remember to pick up his right foot when he walks; otherwise he shuffles or take very small steps. Then he had a balance exercise. All he had to do is take a single step forward and back with his right foot. But he's not shifting his weight correctly when he does that and ends up losing his balance. He also doesn't correct himself automatically even though he knows he's losing his balance.

Another exercise he did is going up some steps to simulate walking upstairs at home. The PT steps have railings on both sides. We'll have to add another handrail at home. It would be helpful for Ma, too.

The therapist also had Pa walk without the aid of a walker. He did pretty well with that and walked all the way back from the PT room to his room with just one rest stop.

Therapies

Pa gets a printed schedule every day showing when he gets his therapy. He gets one hour each of physical therapy (PT), occupational therapy (OT) and speech therapy (ST). PT is a single one hour session, but OT & ST are usually broken up into two half hour sessions.

PT concentrates on his legs -- walking and balance. OT involves mostly his arms. It includes showing him how to dress himself, brush his teeth and wash his hands. He's limited in what he can do because he can't move his right hand much. They also work a lot on his right arm, from the shoulder down to the fingers. Today he had to stack and unstack cones. It's difficult for him because he has trouble opening his hand, but he's better at it now than he was a week ago.

ST includes practicing his speech and exercises to build up his facial tone. He also gets electrical stimulation on his face during breakfast and some ice therapy. Yesterday the therapist had him talk to me on the phone to see how much I can understand

Once in a while, a neuropsychologist stops by to talk to him. A recreational therapist also showed up once, but all she did was take him up to the rooftop garden and let him visit with friends who showed up.

Release Date

We were told yesterday that Pa will be released on Friday, May 22nd. That's only eight days from today. It's hard to believe he'll be fairly independent by then when he can't even go to the bathroom by himself.

Pa has been taking his meals in the dining room. But he has no appetite and has been eating very little of what's on his plate, maybe 5-10% at the most. He still has to get tube feedings afterwards to supplement what he ate.

Soft Diet

Pa was started on a soft diet last night. Among the unappetizing things on his plate, he ate the carrots, ground chicken with gravy, and jello. The only time he coughed was when sipping water. He ate only about 10% of what was on his plate, so he had to be given his regular feeding through his PEG tube.

This morning he had pancakes and ate about 20% of his food. We'll see how he does at lunch.

Swallowing

Pa was mistakenly taken to the dining room yesterday for meals. He's not supposed to eat yet. This happened at both breakfast and lunch. He was given applesauce and thick juice and was observed by occupational therapists while he swallowed, but it's supposed to be speech therapists observing him. Anyway, they said they'll correct his schedule.

This morning he had a barium swallow test. An xray video was taken while he swallowed liquids of various thicknesses. He also swallowed some tuna. They were mixed with barium so that they'll show up in the xray. He wasn't able to eat the crackers or apple because he didn't have his dentures with him. But it looked like he had no problems swallowing. The only time he coughed was when he took sips of water afterwards. We'll know later today if he can start eating soft foods.

Day Off

No therapy for Pa today. There were two sets of visitors. One of them brought a nice orchid plant with lots of buds.

Pa can move all of his fingers now. He can't wiggle them or anything. He can only do very tiny movements, but they're movements nonetheless.

He gets very uncomfortable in bed. But he's also uncomfortable in the chair. He was fidgeting so much in bed tonight that the nurse gave him his Vicodin early. The painkiller makes him sleepy. He's asleep now, thank goodness. He'll also get a sleeping pill in a bit.

Evals

Yesterday was spent doing evaluations on Pa. He saw a neuropsychologist, a physical therapist, an occupational therapist and a speech therapist. He failed the swallowing evaluation again but not as badly as before. While he can walk slowly with assistance, his balance is off. He scored only 19 out of 48 points on the balance test.

All patients get Sunday off, so there's nothing scheduled for today. It's a good day for visitors. Tomorrow he'll start some real therapy. Then the therapists will get together and come up with a plan later in the week.

Transfer to Herrick Rehab

Pa was transferred to Herrick this afternoon. It's an acute hospital so it has regular hospital rooms. They were able to give Pa a private room across from the nurses' station. That's good so that he has high visibility to the nurses. Dorothy said they do that for open heart patients -- put them in rooms where the nurses can keep an eye on them.

I found out that Pa's Heparin has been discontinued, but it's not clear if that was deliberate or an oversight. The nurse will follow up with the doctor at Summit.

I didn't notice any improvement in Pa's hand today. He had his usual physical therapy and occupational therapy today. No speech therapist showed up though. They'll be working intensively on his speech and swallowing at Herrick.

If anyone wants to visit, Herrick is at 2001 Dwight Way in Berkeley, Room 5107. Take elevator C.

PEG Tube

Before Pa can be transferred to rehab, the feeding tube through his nose has to be replaced with one that goes directly into his abdomen. It's called a PEG tube, short for percutaneous endoscopic gastrostomy.

The procedure was done this afternoon. The new tube isn't supposed to be used till tomorrow morning, so I thought the old tube through his nose will be left in place till they can use the new tube. But the doctor took out the old tube. That became a problem because the old tube was also being used to deliver his meds. The nurses would crush his tablets, add a little water, and give the meds to him through the tube. Pa was in pain after the procedure, and there was no way to give him Vicodin. It took a long time to get hold of a doctor. The nurse finally reached a doctor who gave the okay to use the PEG tube to give him meds. At last Pa got relief from his pain, but it took a couple of hours.

Tomorrow, Pa will be transferred to Herrick Rehab. It's owned by Alta Bates Summit, the same hospital where Pa is now, but it's in Berkeley instead of Oakland. Dorothy said they usually have a waiting list, so Pa is lucky to get in right away.

Hand Improvement

Yesterday Pa was able to close his hand around objects. His grasp is even tighter this morning. He couldn't do that just the other day.

Pa failed the swallowing evaluation again. That's three days in a row that he's failed it. They plan to put a PEG tube in him today to replace the feeding tube through his nose.

The occupational therapist helped his take a shower, but it was mostly to evaluate how much he can do. He can't reach his back but otherwise did well.

He had a lot of visitors yesterday. I don't think he got much rest. Usually he sits up in his chair from 6am to past 10am. But when I came in this morning, he was back in bed although he had been sitting up earlier.

Out of ICU

The usual suspects showed up yesterday -- the physical therapist, the speech therapist, and the occupational therapist. I'm not sure, but I think they work on him for an hour each. Pa walked 3x yesterday, reading the room numbers out loud so he can practice his speech. He failed his swallowing evaluation again. He was given some exercises he can do on his face to strengthen the muscles. He's supposed to do them 5x a day. The occupational therapist worked mostly on his arm. He can't move his fingers at all.

Pa was transferred to a regular room yesterday afternoon even though he still has a feeding tube. Dorothy made sure he got a romm across from the nurses' station so that he's highly visible to the nurses. He can have visitors now, so if anyone wants to stop by, come on over.

Longer Walk

The physical therapist stopped by this morning. Pa was able to walk 4-5x longer today than he did yesterday. They also did some exercises, especially on his right side. Later on the speech therapist stopped by to evaluate Pa's swallowing. It was borderline passing, and the pulmonologist doesn't think Pa should be taking anything by mouth just yet. So the feeding tube stays, and the speech therapist will try again tomorrow. In the afternoon, the occupational therapist stopped by. She concentrated on working Pa's right side. In between all these, Pa either slept on the bed or sat up on the chair. He's able to sit up for longer periods and more frequently without getting tired.

Short Walk

There's no change in how much Pa can move. He walked a very short distance yesterday with the help of the occupational therapists. He could manage only 100' total before getting tired.

The neurologist stopped by. He said Pa has some congestive heart failure, so he's getting diuretics for that. When Pa is released from the hospital, he'll be transferred directly to a rehab facility in Berkeley. He'll be there for a few weeks.

Arm Movement Is Back

When I arrived at the hospital this morning, the first thing Pa did was show me that he can move his right arm again. Yay! It's still weak, of course. He can barely move his fingers. The physical therapist stopped by and showed him exercises he can do to get some movement back.

Pa can't swallow properly due to the stroke, so the nurse had to put a feeding tube in him. At the same time, he no longer needed the tubes draining blood out of his chest, so those were removed.

Also, Pa was able to sit up in a chair today. Even though he can move his right leg when he's lying in bed, he had difficulty moving it when the nurse had him upright to move from the bed to the chair.

Pa keeps insisting that he's not in pain, but his color and breathing say otherwise. Tonight he finally agreed to take a Vicodin. I don't think he would have agreed to take a painkiller if he really had absolutely no pain. He can't swallow, so the nurse had to crush it and give it to him through his feeding tube.

Stroke

Pa had a stroke this morning. His right side is affected. His speech is slurred, and his right arm is completely paralyzed. He can still move his right leg although it's slower than the left. He was given Heparin to stop new blood clots from forming. Unfortunately he can't have TPA to dissolve existing blood clots because it's too risky to take after surgery.

What may have caused the stroke is the atrial fibrillation he was having. Also, the carotid arteries on both sides of his neck are 80% blocked.

So far Pa is still mentally alert. He'll be in the ICU for at least a couple more days. He hasn't had any morphine since this morning and insists he's not in any pain.