Ma's Last Wish

Just before Ma was admitted to the hospital for the last time, she called up her friend Emily and requested a lot of things. One of them was for Emily and me to plan a surprise birthday party for Pa. Emily told me about it after the funeral, and I said let's just have dinner at a restaurant with a small group of friends. Next thing I know she had already booked the restaurant, selected the menu, invited a bunch of friends, and said they would pay for the dinner. All we had to do was show up.

So that's what we did. Kit, Sven and I spent the day with Pa at a museum. When we got home, we told Pa we should just go out to dinner. When we got to the restaurant, the waiter showed us to a darkened room. Next thing you know, everyone was singing happy birthday. Pa was surprised. When we told him this was Ma's wish, he said she must have known she wouldn't be around much longer.

The dinner was at a Chinese restaurant. There were 33 of us. We had seafood soup, Peking duck, two kinds of vegetables, salt & pepper ribs, fried rice, steamed fish, and dessert. After eating, the friends gave Pa a card with $300 in it.

Now it's time to write thank you cards again.

Cremation

Ma was cremated on Monday, Nov. 30. Pa went to the crematory. I would have joined him if I had known he was going. I heard he cried.

We picked up Ma's ashes the next day at the funeral home. I didn't see him, but the workers said Pa was crying when he took the urn.

On Wednesday, Dec. 2, we took Ma's urn to the cemetery. There were only about a dozen of us there. Father Larry did the blessing. Pa cried a lot. So did Isa.

The niche has a glass covering so you can see inside. We attached a small, framed photo of Ma to the front of the urn. Next to it we put a framed photo of her as a young woman. We included her two prayer books, worn and all taped up from decades of use, and her blue rosary. Outside the niche is a vase where we put fresh flowers from the wreaths that people sent.

Only one person joined us for lunch. Before Ma died, she wanted Peking duck for Thanksgiving. I thought it appropriate that we have that for lunch. Ma would have loved it.

Wedding Anniversary

Yesterday would have been Ma & Pa's 52nd wedding anniversary. Isa & I joined Pa for the 7:30 Mass. We also went with him to his morning appointment with the cardiologist. Afterwards we stopped at the cemetery to visit Ma. We've been visiting often. Pa probably goes every day and cries each time. I thought for sure he'd cry yesterday, but he didn't. The rest of the day was pretty quiet. I gave him an 8x10 photo of him and Ma from two years ago at Alvin's wedding. He immediately hanged it on the wall. I'll post the photo later.

The Funeral

The funeral Mass was held on Saturday, November 28 at St. Patrick Church in Rodeo, the church that Ma and Pa attended. Most people went directly to the church. There were only about 20 people at the funeral home. We were able to say goodbye to Ma in relative privacy. It was a short procession from the funeral home to the church.

Cousin Fr. Rene co-officiated the Mass with Fr. Larry, the parish priest. Becky, a family friend, delivered the eulogy. Pa said thanks afterwards.

I saw Dr. Hsu, Ma's primary care physician, at the church. Her radiation oncologist, Dr. Shank, was also there.

Not everyone joined us at the reception afterwards. It was held at China Delights in El Sobrante. There were about 130 guests.

The day wasn't as emotionally draining as I had feared. Pa and Isa held up well.

The Visitation

Ma usually shows up early for appointments and parties, sometimes half an hour early. It's ironic she was late for her own wake. Viewing was supposed to start at 1:00 Friday, November 27 (Thursday was Thanksgiving), but her casket didn't arrive till 1:40. I didn't ask what caused the delay.

Ma looked very different. Her face was still very bloated, and her skin had turned very dark (from the chemo, I hear). I didn't like how she looked at all. It was like saying goodbye to a stranger. I'm glad I made an enlarged copy of her photo from before she got sick (this one) so that people would remember what she really looked like.

Ma & Pa's friends and relatives have been incredibly helpful. They brought lots of food to the funeral home and lent a helping hand whenever needed.

I'm not sure how many people showed up. Probably more than 200. I'm sure there were over 150 at the prayers in the evening.

Among the relatives who flew or drove from out of town were Joy, Emily, Ate Rose, Fr. Rene, Romeo, Jess & Helen, and Alvin & Hylee. I saw people I hadn't seen in years. My miserable facial recognition skills were put to the test. I've never hugged or shaken hands with so many people. Ma's cardiologist stopped by briefly. A few nurses also visited. Even patients of Pa's came to pay their respects.

A family friend led the novena and rosary. Fr. Rene read the gospel and gave a homily. Cousins (Vicky, Beth, Jess & Tricia) and a family friend were kind enough to deliver eulogies. Dorothy read a eulogy sent by a close cousin of Ma's.

A family friend made the casket flowers and boutonnieres and refused to be reimbursed for the cost. I was afraid there'd be no other flowers, but I needn't have worried. There were two arrangements from the hospital, one from the cardiology practice that Ma frequented, another from the pharmacy, and one from the termite company. Their office is in the same building as Pa's, and they've known Ma & Pa for years. Cousin Sonny & family sent flowers. So did my friend & Kit's friend Joy along with Kit's other friends Lore, Laura & Noriko. Another relative also sent flowers. My high school classmates Joji & Corette came with their husbands. The family of another classmate Baba also visited. Her mother and Pa were neighbors in Manila and have known each other for years.

It was a long and exhausting day. We were grateful for all the help and caring we received.

Funeral Arrangements

Viewing will be on Friday, Nov. 27 from 1-9pm, rosary at 7pm
Wilson & Kratzer
13644 San Pablo Ave.
San Pablo, CA
Directions

Funeral Mass will be on Saturday, Nov. 28 at 1pm
St. Patrick Church
825 Seventh Street
Rodeo, CA
Directions

Ma will be cremated next week.

Goodbye, Ma

Teresita C. de los Reyes

15 October 1925 - 22 November 2009

Correction -- Septic Shock

Sorry, I meant septic shock, not toxic shock.

In ICU - Long Version

Short version is here.

Ma has lots of problems

Colitis - The colonoscopy showed that Ma has mild colitis due to the chemo.

Leg pain - No DVT. Pain is due to edema. Both arms and legs are swollen and painful. Treatment is to eat protein.

Low blood sugar - Ma hadn't eaten since the night before, and she wasn't given dextrose. By late afternoon, her blood sugar had dropped down to 39. She was given a big shot of dextrose and put on a dextrose drip, bringing her blood sugar up to 158. But a few hours later, it dropped down to 23. Again, she was given the same treatment.

Stomach cramps - Ma was in extreme pain yesterday. At first, the morphine wasn't helping at all. But the dose she got at 5pm finally provided relief, and she fell asleep.

Low blood pressure - Ma's blood pressure had been low throughout the day, below 100/40.

Infection - Ma's right leg got worse and started oozing. The doctor started her on antibiotics.

Low white blood cell count - Ma's WBC is very low, and she was put on protected isolation. No flowers, limited visitors.

Low platelets - She needs another superpack of platelets.

Because of the low blood sugar and the morphine and the way Ma's breathing reminded me of how she sounded when she overdosed yesterday morning, I asked the nurse to wake her up. She wouldn't wake up. The Rapid Response Team was called. They tried two doses of Narcan (1 mg total), and she still wouldn't wake up. The doctor ordered her sent to ICU.

Soon after arriving in the ICU, it looked like Ma was about to go into cardiac arrest, and a Code Blue was called. The crash cart wasn't needed after all. Her heartbeat is fine. It's the breathing that's the problem. She was put on a ventilator. She has acidosis. The most worrisome is that the infection in Ma's leg is due to septic shock. She's on two antibiotics for it. For now she's stable.

Another thing is that the doctor wants a CT scan done on Ma's head to check for bleeding in the brain caused by her low platelet count.

In ICU - Short Version

Ma is in the ICU with septic shock. She was on morphine yesterday for pain. She had very low blood sugar twice (39 and 23). When the nurse couldn't wake her up, the doctor sent her to ICU. Soon after she got there, she went into Code Blue. Her heart is actually okay, so they didn't need to use the crash cart, but her breathing is irregular, and she's on a ventilator.

Overdose

Ma has been having pain in her legs, especially her right leg. Last night she was in a lot of pain. The Norco (Vicodin) was taking too long to take effect, so the nurse gave her 2 mg of Dilaudid at around 3:30am after consulting with the on-call doctor. Apparently this was too much, and the day shift nurse could not wake up Ma. Her respiration was 8, and her blood pressure was low. The nurse had to give Ma two doses of Narcan to wake her up. Even then she was still groggy. Don't know if this is considered a hospital error.

The pain in Ma's leg is possibly due to DVT. She's having an ultrasound done this morning.

In addition, she's having a colonoscopy done this morning to see what's causing her bad diarrrhea. To prep her, she was given a water enema last night and this morning.

Still in Hospital

Ma's still in the hospital. On Tuesday she was given platelets and another unit of blood. Yesterday 2.5 liters of fluid was drained from her abdomen. Despite the platelets, the incision bled a bit last night. Ma started solid food yesterday. She still gets diarrhea. Dr. Irwin said she'll be discharged when her diarrhea is under control and she's seen by a physical therapist. I don't even  know how much she can walk at this point. I doubt she'll go home today but maybe tomorrow.

In the Hospital

Ma's in the hospital. She's been having severe pain in her abdomen and diarrhea and vomiting. Turns out she's anemic. Probably a side effect of the chemo. She was given two units of blood. They did a CT scan of her abdomen today. No results yet. Don't know if she'll be released tomorrow. But her symptoms are under control. She's a bit bummed that she's not allowed to eat.

Ascites

Ma had her CT scan Friday. She did have fluid in her abdomen, and they drained 2.5 liters from her.

Correction to her weight. She had told me she weighed 159. Turns out she meant 129. Big difference. Anyway, she was down to 123 after the procedure.

She's been having cramps and diarrhea and takes Vicodin for the pain. Pa thinks it's all due to the Xeloda. Her last dose is Wednesday morning. Maybe her symptoms will be relieved after that. She sees Dr. Irwin on the 25th. I think he plans on giving her a break from the chemo.

Acid Reflux

Ma has been complaining of acid reflux for a week now. She's also bloated. Three days ago she weighed 123 lbs. Today she weighed 159! The extra weight is probably due to fluid in her abdomen. That's like 4 lbs. of water. She's having a CT scan done on Friday and will have the fluid drained then. Dr. Irwin doesn't know if the ascites is due to her cancer or her liver. Her PET scans show spots on her liver that the radiologists interpret as cirrhosis.

A Xeloda Side Effect

When Ma first started taking Xeloda, I kept asking her if she had any side effects. She said no. Today I found out she's been getting dry lips and mouth sores. She's been using her leftover "magic mouthwash" from last year. It's a mixture of Nystatin, lidocaine, Benadryl & Maalox I don't know if it's helping, but she's able to eat. In fact, sometimes she eats too much. Last night her blood sugar was nearly 400!

Ma saw Dr. Irwin today. He'll keep her on Xeloda for now and will see her again before Thanksgiving. Her breast isn't as angry red as it was before, but we don't know if it's the Xeloda that made a difference. Her tumor marker CA 15-3 went up to 49.4. It had been 38 in early September. Normal is 0-25.

No Radiation

Ma had an appointment this morning with Dr. Shank, the radiation oncologist. Dr. Shank feels that additional radiation will not help Ma at this stage. This is what I expected to hear.

Afterwards Ma had her port flushed. I keep forgetting to ask if Ma should have it removed, but maybe it's better to keep it just in case.

Crappy Insurance

I spent over an hour making phone calls to the online pharmacy and insurance company and the pharmaceutical company. It looks like the $366 copay is correct. That's $530 a month or $6350 a year. I thought Ma had good insurance but apparently not when it comes to her chemo pills.

Xeloda Arrived Today

Ma's pills arrived today, and she took her first dose of 3 pills tonight. She'll be taking them twice a day for the next two weeks, then she gets a week off. If she gets severe side effects, the oncologist can adjust the dosage.

Ma ordered her Xeloda online hoping that will save money, but the online pharmacy claims she has a copay of $366. That's too much! I hope it's just a billing error. According to the manufacturer (Roche), Xeloda is covered under Medicare Part B. I suspect the pharmacy is erroneously charging her meds under Medicare Part D (prescription drug coverage). Apparently a lot of pharmacies don't know how to bill oral cancer medications. Roche even provides the correct billing codes. I'm hoping we can clear this up in the next few days.

Skin Metastasis

Ma's cancer has spread to her skin. The symptoms: red, itchy skin on one breast only (the one that got a lumpectomy) along with tumor nodules. The treatment: An oral chemo called Xeloda. It's milder than IV chemo. The worst side effects are diarrhea and hand & foot syndrome. Hair loss and nausea, while possible, are less likely to happen.

Ma will take 3 pills (500 mg. each) in the morning and 3 pills at night every day for two weeks, take one week off, then start the cycle all over again. She'll be on it indefinitely.

Update on Pa (and a Mini Update on Ma)

Pa has improved dramatically in the last month. He no longer needs physical or occupational therapy. He'll go once a week for speech therapy, maybe around 4 sessions.

Today he went back to work. Fifteen patients showed up. Busy day. He plans to stick to his old schedule of 5 hours a day, 4 days a week. Ma & Tito Lum helped out at the office.

Leg

He can walk without a cane. His balance isn't quite there yet (he can't stand on one leg), but it's improving.
 
Arm

•  He can drive. Ma insists that he stay off the freeway for now.
• He can play the piano, kind of. Nothing like before. He can do octaves and can play only two notes at a time. But he practices daily and is steadily improving. The arthritis in his fingers is getting to be a problem though.
• He can write slowly. Uppercase printing is fine. Cursive writing isn't legible yet.
  

Face/Head

• His swallowing is back to normal. The feeding tube was taken out two weeks ago. It hadn't been used in a month.
• He still has facial droop. This is the most visible sign of his stroke and may never go away entirely. He will get speech therapy for this.
• Speech is still a little slurred due to the facial droop.

Update on Ma

Ma is on physical therapy for her legs. She walks so slowly and with a cane. We're hoping therapy will make a difference. She used to have numbness in her legs, but it went away after she started exercising.

Handrail

The handyman is here and just installed a second handrail along the stairs. Ma has already tried it. I also had Pa go up and down the stairs. He said it's much easier having two handrails.

We finally got an aide to come out and help Pa take a shower. We already had a shower chair from when Ma was sick, and the showerhead is attached to a hose, so that made things easier. Isa & I will try helping Pa take a shower this afternoon.

It looked like a combination of Trazadone and Benadryl helped Pa stay asleep, but it stopped working after just a couple of days. Last night we tried Trazadone and Ativan, and that seems to have worked.

We saw Pa's cardiologist on Thursday. He was very nice and very helpful. He didn't like Pa's EKG results and had cut Pa's heart medicine in half. He wants to do another EKG on Monday to see if cutting the medication makes a difference.

Safety Recommendations

The physical therapist made several recommendations. Among them:

• Add a second rail to the staircase.
• Remove the shower doors and replace them with a curtain.
• Get a bed rail for the bed.

I found a hand rail at Home Depot but have no idea how to install it. Use L brackets maybe?

I think the shower doors can be removed easily enough. The reason the therapist wants it removed is so that there will be a wider opening when entering the shower stall.

The bed rail makes it easier for the patient to get out of bed. I'll order one from Amazon. There are versions that can be installed without tools.

All these suggestions should have been done when Ma was sick, but she never got physical therapy, and no one ever checked the house for safety. When she goes upstairs, she goes up one step at a time and uses a cane. She said she doesn't have trouble getting out of bed and apparently can take a shower standing up. I did get her a shower chair, but she's used it only once. The shower stall actually has two seats, but they're full of shampoo bottles and shower gels.

Home Therapies

Since Monday:

• The physical therapist has stopped by twice and put Pa through some exercises. I told her to work on his balance.
  
• The occupational therapist has also visited twice. She knew who Pa was because Pa would send patients to the home health company she works for.
  
• The speech therapist, who also knew Pa from patient referrals) thinks Pa doesn't need anymore help in that area. His speech isn't totally clear yet, and he still needs his food pureed, but continuing with his facial exercises is supposed to help with that. He also has more trouble than usual drinking water, so I bought a product called Thick-It to thicken his water.
• The nurse stopped by twice and thinks Pa is healing well. She suggested Benadryl to help him sleep, so we'll try that tonight. The Restoril he'd been taking has nasty side effects and doesn't keep him asleep.
  
• I made up a schedule for Pa so that we can do his home exercises in between visits from the therapists. I've been making Ma go through the physical therapy exercises with Pa to strengthen her legs. She always walks so slowly.
  
• Pa visited his PCP, Dr. Hsu, and underwent an acupuncture session to help his stroke recovery. He'll be getting acupuncture once a week for a while.
• Lots of friends have been dropping off food to eat, mostly soups and desserts.
• Pa fell tonight, sort off. He slid off his chair and onto the floor. He had been sitting on the edge of the chair to put on his shoes, and thought he could get up from that awkward position. It took three of us to get him on his feet again.
• I went home for two nights to take a break. I can't wait to move back home again. My cats, however, are perfectly happy, and think they own the place. They've been terrorizing Isa's cats.
  

Physical Therapy at Home

Pa woke me up only 2-3 times last night. He slept all the way through from ~2:00-9:30. I woke him up at 9:30 only because the physical therapist was stopping by to evaluate how much therapy he'll need at home. She said he has a lot of potential as long as he does the exercises. She wrote down some exercises he can do and said she'll be stopping by maybe twice a week for the next 3-4 weeks.

We already had a bunch of exercises that the physical therapist at the hospital gave us. We're supposed to do them all several times a day. I think we managed to do them just once. Pa gets tired easily. He needs to build up his stamina.

Pa has been sleeping in late since he got home. Tomorrow I plan to get him up by 8:30. Otherwise there won't be enough time for all the exercises he needs to do. It's not just physical therapy but also occupational and speech therapy.

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.

It's a Quad

Pa is out of surgery and is in the ICU. No complications. The only surprise is the surgeon did a quadruple bypass instead of a triple.

I had a brief visit with Pa. He's sedated and has a breathing tube down his throat. He also has two chest tubes to drain blood out of his chest. I counted eight bags of IV medicines hanging over his bed. Despite all that, I thought he looked fine, like he's just asleep.

If all goes well, they'll remove his breathing tube tomorrow morning and have him sitting up in a chair. By afternoon he could be transferred to a regular room.

Bypass Scheduled

Pa is scheduled for a bypass on April 30. He had a second stress test on April 3rd, which he failed. The cardiologist said it looks like Pa already had a mild heart attack in the past. Pa thinks it may be when he had chest pains last December.

He had a consultation with the surgeon today. He'll be in the hospital for 5 days. Recovery will take 1-3 months.

All Clear

Ma had a PET scan recently and also a blood test to check for tumor markers. She then saw her oncologist last Friday. The tests show no sign of cancer. That's very good news. She'll have another follow-up with the oncologist in two months along with another blood test. The PET scan will be done every 3 months.

Chest Tube Removed

Ma's surgery was moved up to 7:30am, which means she had to check in at 6am. She insisted on leaving the house early and arrived before 5am, over an hour early. The lobby wasn't even open yet, but the guard let them in anyway. I arrived at 5:50am, but Ma had already checked in.

Dorothy stopped by with cafeteria passes, so we had breakfast while waiting. The surgery and/or recovery took longer than expected. They didn't let us in to see her till after 9:30, and we left the hospital at 11:00. Ma was a little nauseated but not too badly. She's sleeping right now at home. The stitches will be removed in a couple of weeks.

She was put under for the surgery. I was mistaken about her previous surgery (to insert the tube) being under local anesthesia. She said she was put under for that one, too.

On the way out to my car, I saw a lady playing Tea for Two on a harp. She wasn't in the lobby but next to it, wedged between the staircase and the pillar. It was the weirdest thing. Nice music though.

Surgery for Chest Tube Removal

Dr. Khan decided to play it safe and wants to remove Ma's chest tube in the operating room instead of in his office. Ma has pre-op lab work scheduled for Monday. Surgery is on Tuesday at 10am. She has to be there by 8am (and so do I!). It's supposed to take only an hour. She was given a local anesthetic when the tube was put in, so presumably she'll only need a local when it's pulled out.

Chest Tube Still There

We saw Dr. Khan today about having Ma's chest tube removed. Unfortunately, he wanted Pa to try to drain her lung one more time before removing the tube. He sent us home, and we'll return in a week. Pa drained Ma's lung this afternoon, and no fluid came out, so it looks like next Wednesday will be the day the tube comes out.

In the meantime, Pa also spoke to Dr. Khan about needing a bypass. Either Dr. Khan or his partner Dr. Stanten (both of whom had operated on Ma) will do the surgery, if needed. Anyway, Dr. Khan feels that 95% blockage on a main artery is too high. He wants to see Pa after his next stress test. The stress test is on 4/3, and Pa's appointment with Dr. Khan is on 4/15.

Follow-ups Appointments for Ma & Pa

Two appointments today. First, Ma. Dr. Irwin is amazed at how good she looks and how well she handled radiation. He will see her again in a month. The PET scan and blood test for tumor markers will be done at that time.

Pa ordered a chest x-ray for Ma yesterday. Her lung is pretty much clear. There is a pocket of fluid in the lung, but it's trapped in an area that's inaccessible to the catheter. Ma has an appointment with Dr. Khan in two weeks to see about removing the catheter.

Second, Pa. The blockage is 95% on the right coronary artery, 80% LAD and 80% circumflex artery. Despite that, Dr. Weiland recommends waiting. He said even though the blockage sounds bad, he doesn't think Pa automatically needs a bypass because he's pretty much asymptomatic. I asked him what waiting means -- wait till when? He said till he gets a heart attack or chest pains. I did mention Pa's family history of sudden death, but Dr. Weiland didn't seem too concerned. If Pa has surgery, it'll take him 2-3 months to recover. So the plan is to have another stress test in two months.

Pleural Effusion Drying Up

Ma's pleural effusion is finally drying up. The oncologists had hoped that the radiation would have this effect on her lung, and it seems to have worked. When Ma first went home from the hospital back in July, her lung would produce 800-1000 ml of fluid every day. More recently, it was down to 300-500 ml per day. Last Wednesday, Pa drained only 30 ml out of her lung. That was two days' worth of accumulation. Last Saturday, he got only a few drops, probably not even a teaspoon. Pa said he will talk to the pulmonologist. Maybe they'll be able to remove Ma's catheter. I'm sure she'll feel a lot better without that tube sticking out of her lung.

Ma has a follow-up visit with her oncologist on Wednesday afternoon. Pa's appointment with his cardiologist is in the morning. We'll see what's in store for both of them.

Triple Bypass

Pa was sent home after his angiogram. He did not undergo an angioplasty or stent. His doctor said his arteries are "severely clogged." He's going to need a triple bypass.

It's not clear to me how much of this he has told Ma, Isa & Tito Lum. At first he thought he was free and clear even though the doctor told him to take an aspirin daily and carry nitroglycerin with him at all times. For some reason, the doctor didn't tell him about needing a bypass although he did tell me. When Pa started telling all his friends he was fine, I had to tell him the news. He then called his doctor yesterday and was told that three arteries were clogged.

He has a follow-up appointment on Wednesday. The doctor thought he might want to hold off on the bypass because Ma was still undergoing treatment for cancer, but her treatments are over. This is actually a good time for him to have surgery.

Radiation Done

Ma got done with her radiation last Friday. They gave her a certificate of completion, and she was happy about that. We'll see her regular oncologist next week about follow-up tests. Her breast area has first-degree burns, but she hasn't complained of pain. She also hasn't complained of fatigue, the most common side effect of radiation treatment.

Pa is having an angiogram tomorrow. He says it's likely he'll need an angioplasty at the same time and will have to stay overnight at the hospital. Isa will drop him off at the hospital at 7am. His procedure doesn't start till 9am. I'll probably show up around 10am.

One More Week

Ma's almost done with her radiation therapy. If the machine stays up, her last day is on Friday. She has tomorrow off due to the Martin Luther King holiday.

The skin on her breast has turned really dark and is peeling off. She hasn't complained of pain though, so at least it doesn't feel like a sunburn or a 1st degree burn.

Pa went for his stress test last Wednesday. They found an irregular heartbeat. He has an angiogram scheduled for the 29th.

Upstairs

Ma had been sleeping downstairs in a hospital bed since she was released from the hospital last July. She hadn't been going upstairs at all. The downstairs bathroom has no shower, so she's been taking daily sponge baths all this time.

While Kit was here, Ma started going upstairs to sleep in her own bed. She also has taken a shower a couple of times. Pa has to help her, and she uses a shower bench. I suppose I could help her myself, but I don't want to.

A week ago, Pa said he had some chest pains. He went for a blood test today. He's also going for a stress test on Wednesday next week. He doesn't want to move up the date, saying there's no rush since he hasn't had additional pain. Is it really okay to wait?