Dad’s progress via sms

Before I delete the sms updates about dad’s progress, I thought I should post it here as a record. I had already deleted some. Here are the rest.

13 Nov 2010 – For 10 days stools leak in pampers 8X a day since d last enema on 4/11 n stomach cramp n anus pain daily fr our FAMILY RECORD. Dr confirm dad has chronic constipation. This am nurses manually “dig out” faeces. Dad to sit on commode daily to pangsai even though pain. He will stop new med tonite, give liquid parafin to soften stool, then next week given enema to clear bowel.

19 Nov – Dr says do not require procedure to stop bleed cos it is reducing. Now prepare n search for matchin blood transfusion in 2 or 3 hors. Bp up from 110/60 at 4pm to 140/90 at 5.05 pm. Dad vital signs good. Sleep 1 hr sessions for 3 times already. Able to chat to brother over the phone.

21 Nov – Dear all, dad transferred to high dependency unit since 4.05am due massive n active bleed. Blood transfusion now. Await dr. Nurses say about 8. Pls come and talk to doc if can. I didn’t sleep at all last night n not sure I can handle d dr.. can come to see dad condition one or two at a time.

22 Nov – Nurses say “better than last nite” they don’t let me go in yet until 10am………..Dr say “one of the d possible causes of bleed” is d ulcer in rectum. Another could b lining of stomach due these few wks stay, many causes he cannot pinpoint. Since no bleed, fr anus since op, possible this issue is addressed. Dr say “pray for best, wait and see these few days” slight bleed in bag is as expected. Hypertension drug will b resumed as it was witheld yesterday. Continue tube feed plus start mouth feed today. Not sure if will be transferred to normal ward today yet………….. Dad  say “durian kueh” when asked what he is thinking. Pain when moved around. My observation is about 1 or 2 nurses rough. Dad say “6 in 10”.

24 Nov- Gd am. Dad slept super well, 1st time he clocked 2+2+3=7 solid hr plus, 1st time in wks. Slept since aunties left 9pm till now…past 24 hr no bleed n still counting bp 140-64……. Dr says dad will no longer be constipated again for life w the colostomy bag… dad refused porridge for lunch even though stopped milk since 12pm. At 2pm we resume milk. Bp at 1pm 150/70. One hypertension drug given, one witheld.

25 Nov – Dad had a good 2+3 hr sleep last night between 11pm till 8am. Enjoyed his yoghurt drink, dhall mixed into his regular belnded fish/egg white porridge… eyes more alert, watched tv……Hv requested if dad can be off oxygen n to check if dad can be taken on “wheelchair ride or ambulate”. Nurse checked, apparently doc has ordered it “dad will be taken round hospital later today as part of his physio. We hv to remind nurses to check his oxygen level…….Latest diet plan for dad is: 3 main meals to be orally fed with added protein drink supp, 2 tea breaks use milk bolus feed plus 9pm to 6am continuous milk pump so no need to disturb his night sleep……..Dad has been taken off intravenous drip, water intake depending on oral, bolus n pump feed. Unable to wean off oxygen yet as oxy level dipped too low n they have resumed oxygen. Changed to softer ripple bed.

26 Nov – Dad’s oxygen on weaning off program. Today 11.30am reduced to 2 litre. Breakfast: few teasp dhall, few teasp peanut soup. Mid morning tea: one marie biscuit mashed in barley. Our oral feed is more like food flavours to lift d spirits… d mashed potato here too hard. We can ta pau frm KFC… lunch. Too sleepy to eat his tofu n egg puding dessert…

29 Nov – Dad slept well 3+3+2 last night 11pm till 7am! 75ml water + 25ml milo + 8 tsp fish n egg white porridge since awoke. Awaiting bath…Dr confirmed he will stop d anti bleed med for tmrw. He requested for stoma nurse fr another ward to assist in colostomy bag management when I related that it took 3 nurses half hr to change bag…..Dad Bp on d low at 2.30pm 90/50. This is without any hypertension drug. Nurses will monitor before decide whether to give, if at all today….3pm bp 110/60.

1 Dec – Dad slept fr 10pm till 6am (short period of wake around 2am). Oxygen 97%, bp 153/67 (use machine at 6am) Drink 1 tin milk w straw at 6am. Spoonfeed himself 10 tbsp porridge n one cup barley at 8am. To shower in bathroom n will take wheelchair ride today….Bp 130/60: oxygen 98%; 36.6 at 10.30am. This am nurses quite slow. Hv to call many times.

The end of the journey

Dad is coming towards the end of his journey now. There is no turning back. The alarm clock dial has been turned. Who knows how long that journey will be is anybody’s guess but he has started to walk the path now and so far it is a hard rocky road…. for all of us but hardest of all for dad. It is not easy to know how hard it is for him because he does not complain much, nor even moan. In great pain, all he would say is “Aiyoh, can die from this pain.”  without much moaning or groaning.

When one of the nurses said “Come on, be a man” during an extremely painful bowel movement, he said “Why don’t you try to sit here and see?” When the doctor said “You must work harder. Work hard.” he said “It is easy for you to say.” He says all this as a matter of factly without getting emotional. That is the spirit of dad.

Dad is strong, brave and his mental will is there… but will his physical body keep up? We don’t know. A stroke followed quickly by an invasive medical procudure under ga, so much bleeding in between and a few blood transfusions and then followed by a surgery under ga all in one month. How much can the body withstand? An elderly body?

The other night when dad was bleeding a lot and the nurses were in a flurry calling the emergency at night, dad asked the nurses “Do people die this way?” and “Please call the doctor quickly”. Since it was night and a public holiday, I think, it took a while and dad mumbled “Don’t worry, God will take care.” When still no doctor was in sight, dad said “God is so slow. Nevermind, if its time to go then its time to go.”

The next day,  he was back to his old self, making everyone laugh. He had to fast in case of the need for an emergency surgery which he eventually had. He was parched but he could not even have a drop of water. All he could think about was coke and ice-cream and anything else thirst quenching. When we asked him what he was thinking about, he said he was trying to decide which is better “durians or pineapples”. When we asked him which was better? He said “coconut” much to the amusement of everyone.

The nurses like him because he is very funny. When they come to change him, he was talking to them about having coke and chocolate and vanilla ice-cream.

I could kick one nurse though. She was so insensitive. We were not sure whether to tell him he had to go for another surgery but she came and said loudly “Uncle, you are going for operation now hah.” and then right in front of him she started telling me about how long the operation will take and “touch wood lah if nothing happens, you should expect to wait 2-3 hours.”

After that, dad started mumbling about wanting to eat, then sleep, then wake up to eat and sleep again and everything depends on luck. I said to him “daddy your luck is good so far” and he said “No.” Then he continued to say “Coke is the best” and I pointed to his nose and said “No, you are the best.” but even that could not bring on a smile. I have not seen him smile very much in this one month.

Dad is now recovering from a colostomy surgery. I hope that he will make good progress and be able to eat again soon. One step at a time. First, we have to stop the bleeding and get the bowels moving properly again even if it means a colostomy. Then, we get back to teaching him to swallow again (which was derailed by the impacted stools and bleeding problem), then only we get him to learn to use his limbs again. One step at a time. We dare not even think about going home yet even though dad has been at the hospital for a month now, from 2nd floor to 3rd floor to 5th floor, to 4th floor, to 6th floor moving around from ICU to normal ward, back to ICU, to normal ward to HDU (high dependancy unit), to OT back to HDU. All we can think about now is one step at a time.

Eldest sister is a bag of nervous energy. When she had to sign the consent letter for the surgery, she was shaking all over. It is certainly not easy at all. How do you sign a document that may take your father away from you? She and 2nd sister has been spending the most time with dad. There are 5 of us plus 2 sisters-in-law and a maid. We take turns making sure dad is not alone at any time so we can catch any emergency early. We have a record book so anyone who sits with dad will record any important things down and the next person continues. It is very useful indeed.

One day at a time. May we all have the strength to walk this final journey with dad one day at a time. Who knows maybe the days will turn into years. We are grateful for any time to see and touch him.

Tough Cookie

Someone said that dad is a tough cookie and one of the little ones said “He is not a cookie”. 🙂 Dad is indeed a tough cookie. He never complains. He is very stoic. He takes everything in his stride. Maybe it is due to his job as a detective sargeant in CID secret society branch previously. Or it could be because , while handling  his tough job, at the same time, he was a single dad to 5 kids after mum died almost 35 years ago from now. Dad was 44 then, my age now. Then, he instantly became a single dad to 5 of us from ages 10 to 18 but he never complained. I think if I were to instantly become a single parent to 5 kids at my age, I would have been overcome with stress.

He is still not complaining. Even though he is bed ridden, half paralysed, unable to swallow foods and relies on a feeding tube for sustenance. He was also in great pain because he had impacted stools due to constipation from lack of movement and an overload of medications perhaps. He had to be back in ICU and had to undergo a procedure to remove the stools manually under general anaesthesia. There was a 30% chance he could die from the procedure but if he did not go through it, he would die. Not much of a choice is there. The anaesthetician said it was his 3rd time in 20 years to do this for this procedure and worse, for an old man just recovering from stroke was very rare indeed. Possible complications are he could have another stroke or a heart attack during the procedure.

Tough cookie that he is, he is back in the normal ward now. The nurses like him. He is a model patient doing everything that he is told without a whine or complaint. When they came to pour milk into the tubes for him, he told them he wanted teh tarik. Poor dad. He wants so much to taste normal food again. He talks about nescafe panas, karipap, ham chin peng, durian, mango, sugar cane juice but we are thankful that he is now only able to sip water mixed with edible starch and a little bit of porridge under close supervision. Before that even water was denied him and he complaint of great thirst. Milk is poured into tubes that goes into his nostrils right to his stomach. He does not get to taste it. Imagine wanting to eat but being unable to, wanting to get up but being unable to. What must he be thinking… feeling. Sometimes we don’t know because dad has dementia to add to his woes.

What worries us the most is his sleep wake pattern. He would sleep for 2 minutes, wake up for 3 minutes and repeat this pattern for 24 hours a day. Even the doctor is perplexed. He has not seen such a short cycle before. Sometimes during his 3 minutes of wakefullness, he would mumble to himself. One night that frightened the nurse in the night shift because she thought he was talking to someone behind her but there was no one there. But that is only because of his dementia.

He still does have his moments of sharp alertness at times. Like the time the nurse kept on asking him for her name. “What is my name? Don’t you remember? I just told you this morning? What is my name? What is my name?” and then he looked at her and said “What your name is, is not important to me.” At our prompting the nurse asked him, “So what is important to you?” and he said “Recover faster.” How very like our old dad that is. Sometimes a bit sarcastic and very straight to the point without giving face. But we are delighted to catch a glimpse of that.

And so we go on with our ups and downs. Can we all be tough cookies like dad and not be crumbly cookies because the situation calls for us all to be tough. There is much to do and no time to crumble.

Chronic Constipation

To add to his woes, dad is now having chronic constipation and his stools are impacted.
Fecal impaction is a serious complication of constipation in which the stool hardens and can no longer be eliminated with normal bowel movements.

This condition is causing him a lot of pain both physically and perhaps mentally too. It may be a blessing in disguise that his dementia protects him somewhat from the indignity of having several females hovering over and fussing over you each time you need to defecate. (which is up to 8-10 times a day during the previous 10 days). However, he did sigh at one time and said “Haiyah! Need 10 people just to poo.” Something to that effect. He also said “tuhan tolong buatkan kurang sakit.” (God please make it less painful).

Despite his dementia, dad switches between Hokkien, Mandarin, English and Malay easily depending on who he is speaking to. He even spoke in Indian to one of the Indian nurses causing the nurses to break into laughter.

I hope that you are listening God. Please make it less painful for dad. Please give him back his swallowing ability so he can drink more water. Please give him back the use of his limbs so he can move around and prevent more constipation. Thank you.

I wish I had a lot of money

At the moment, I wish I had a lot of money… to afford the best healthcare there is for dad to make him as comfortable as possible, to give him the best quality of life and to make recovery for him as smooth and as fast as possible.

Dad was in ICU and in hospital for 3 weeks now. That equates to lots of $$$$$$$$! When he is discharged he will need to go back to the hospital frequently for physiotherapy. This is no easy task, not when you have to be transported from bed to wheelchair to car to wheelchair to gym then from gym to wheelchair to car to wheelchair to bed again.

If I could I would like to buy a good hospital bed with remote and the best wheelchair. I would like to have a special van for wheelchair users so dad can get out to the physio gym to do the necessary exercises to aid and speed recovery. I would like to afford mobile nurses to come to the house to make sure dad gets the best care, nourishment, hygiene.

I don’t know how much the hospital charges will eventually be. The deposit was RM10k. Dad’s new medication costs over RM1k a month. 24 hour mobile nursing would cost RM15k a month. There is a special sponsored transport service for wheelchair users which costs RM3 per person per trip. So lets say someone accompanies dad to the hospital for phsio. That would mean RM3 x 2 persons  = RM6 x 2 ways = RM12 for a to and fro visit to hospital using the special van. There are many more expenses. Thats only the transport charges mind you.

Yes, at this moment. I wish I had a lot a lot of money.

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