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ttt Triveni nurse helper joined today 11 am. She seems to be ok ( as of now!) 2. We went to manipal hospital radiotherapy unit at 1pm. they did scanning in mri machine, and have planned treatment. So, 19th Sept,4pm 20th Sept,4pm 21st Sept,4pm 22nd Sept,4pm 23rd Sept,4pm Five days of radio therapy will be done now. Since NAPAD relatives will be there, *Amma can go with one of the relatives, plus Triveni, for radiotherapy* 3. We also went to Pain Management Doctor Sadashiv iyer and Dr Vedhavani.They have given full confidence to Amma about managing her pain till end of her life. They explained many details ( morphine, patch method etc etc). He has also given some medicine for hunger. So Amma was happy to hear. 4. But Amma health daily coming down. Eg – today from beginning to end at Manipal, only wheelchair. She is not able to walk even 5 feet. So I have ordered wheelchair for home. 5. Lot of injections Amma has to start having every 15 days till end of life ( Esentra 120 mg – costs Rs 25K per dose). Also Strantas 500 mg every 15 days – means Rs 26K per dose. Cost is not relevant, but my point is – these are very heavy medicines, and will cause side effects. ———- We came back home by 4pm, Amma had kanji and now is sleeping ok 18/09/23, 9:02 am – Sathish: prema update all injections given as of sunday noon. from sunday afternoon, amma feeling ok and walking by herself, till now ( monday 9am), she is ok with no pain. let us see. radio is starting tomorow ( for 5 days continuous) *prema update* last 24 hours amma ok. today taken her to vista home, she did pooja there, then we went to devin paradise enclave ( about 1 hour drive) – where grand pandal was put up. back at 4-5 hours of outing somwya and prasanna came in evening to meet. *prema update, tuesday, 26 sept* health wise ok, no pain etc. also somewhat ok eating ( compared to before). but very little sleep. last nite only 4 hours ( 1am to 5am). everyday sleeping tablet ( restyl). also, some change in behaviour last two weeks ( she is sometimes talking strange things😀). today final radiotherapy at 130pm. then meet with her cancer doctor. will update but let us try to control restyl ? ok-vaa finished radiotherapy fully, also met cancer counseller. will give all details later. amma is ok for now. both me and triveni ( nurse) are taking care Tuesday we met Radiotherapist and then Cancer Doctor Dr Poonam a. Radio sessions over for now. No need more sessions b. Dr Poonam has given full schedule for injections and tablets for next 3 months. c. One of the tables (Pablocyclib) has some side-effects including CBC count ( blood count) which can go very low. So we need to do bloodtest every week to ensure. d. No need to meet Poonam for now ( unless emergency). Next visit Jan 1st week General notes : 1. not doing too good, very average health 2. feels very weak all the time (maybe due to radiotherapy effect) 3. ulcer and boil near lips, tongue etc. so unable to eat properly ——- So we are taking best possible care. will continue to update here new medicine pablocyclib ( to be had daily) is very powerful i think. she was not able to manage. we started yesterday night, but have stopped it today because of side effects. let us see tomorrow. amma was v weak for full day, mouth ulcers continue. also some shivering was there in evening time.so full time just lying down in bed and not even sitting. anyway tomorrow i will order and *keep one drips machine and stand* ready at home for emergency purposes at 1 am ( early morning), some breathing problem. so took her to venus hospital in wheelchair. back home by 230am. doctors checked, bp, o2, ecg ok. so bk home by 230am. she took restyl and slept after that. now at 9am, she is ok, only weakness and vaay-punnu is there tomorow pithrugal day. i will do sankalpam at matta. prema is saying pithrukal are calling her ugently. i will pray to pithrukal to delay and call her only after sudha function and also my function on 28 oct 135pm admitted mom to downstairs hospital on emergency, once again. sugar 40, bp at 100/52, tuf times, will update tue* 10 am she said feeling weak 11am she said i am sweating a little. i told her not to worry ranganayaki was expected to visit her by 1pm, so she got dressed and put necklace etc at 1230pm 1pm i was in shop. she called and said – something wrong with me. i am sweating a lot. hand also shivering. take me to hospital imm. 115pm i reached, imm in wheelchair with triveni, took her to hospital downstairs dr rajasekar was there, shobha nurse. imm took bp and sugar. bp was 100/52, sugar was 40. “so let us put her on drips imm. go get dextrose 25”. so we started treatment. at 3pm, sugar stablised to 200, bp at 130/70. more blood was taken out for other testing ( report came at 7pm and doc sats rbc and hemo count are low, lets see). 7pm latest update – doc says ok take her home, let us keep the canula in body itself if any emergency in nite, we will remove it after 2 days, so prema will be discharged by about 8pm after the drips is over *prema update, 3 oct, 930pm* discharge happened at 830pm, back home she had one idli bp and sugar ok. but only problem is her hemoglobin is 8.5 which is very less than min 12 required. she needs to eat food. i have got all blood-giving food at home – pomegrante, beetroot,dry fruit, black grapes,leafy veggie, dates, date syrub, everything. *but problem is she is not eating anything. she is just shouting and throwing it away.* when u next speak to her, pl request her as much as possible to eat txs to everybody for ur support. i will surely keep informing on status regularly. 🙏 as of now triveni is continuing, and with gv aunty advice also, i feel she will adjust. but i have kept other 1-2 agencies ready. if at all some situation, they can get a person quickly. there may be 2-3 days gap. if that happens, i may urgently need support. anyway, let us hope that this arrangement continues as of now, schedule is like this 5 and 6 oct sudha is coming, so she can take care 7 or so – i think raghu maama/indu aunty may come ( not sure) lakshmi aunty can come if any emergency need same way gv aunty can also come imm if reqd latha chikamma is coming after 20th i think prema was at downstairs hospital from 6 to 7pm. on doctor advice, admitted her to manipal emergency now 755pm. details later pl her sugar level has been v low last three days. it was 30 when doctor checked at 7pm. so rushed to manipal emergency doctors doing a few more tests now. she is shivering bcos sodium also v low. they will be admitting her now ( not sure how many days), so anyone planning to visit ( sudha?), pl note her current address *prema update, 4 oct, 11pm* still in emergency ward. some xray and other tests done. she is better now, talking ok. v weak and shivering little, but definitely improved a lot from 7pm status. we are waiting for them to shift her to ward, not sure when it will happen. full crowd in emergency section, by the way test result has come showing sodium very less ( less than 100). so doctors will put canula ( drips) on her neck and increase sodium level, otherwise she can get brain stroke. so i agreed. will be bit painful but what to do ? they will start procedure in 10 mins now neck canula put. like small baby boochandi kaatarthu, we made amma to smile while putting painful canula dhodamma – amma is really cheerful now. thembu vanthduthu, after sugar level increased ! me and amma are now joking about some old napad story. so dont worry, all is ok innuru joke – oru pakkam ( in hand) glucose is going. oru pakkam ( in neck), sodium is going. and in mouth, kichdi is going amma was very hungry so they triveni ootified kichdi with spoon into mouth sudha, pl note – bed number 516-A, 5th floor, manipal hospital, old airport road *prema update, 5 oct, 10am* during nite, one round of problem. 4 am – sodium got v low. sugar got high to 280. so some treatment given by duty doctor on 5th floor. she got bit ok after that in 30 mins 945am – dr anisha, asst of dr poonam came. what she told – 1. we will keep her in observation for 2-3 more days atleast. 2. stop zoryl ( the sugar medicine). also stop pablocyclib ( it is not working for her) 3. full mouth ulcer so she is unable to eat, will give medications 4. need to analyse why sodium going down. now it is 123 ( quite ok), but why it is dipping time to time? 5. even later at home, u need to monitor sugar level every day ( maybe two times a day) 5 oct 2023, 1 pm* dr poonam came along with her asst ( dr anisha) around 1045 am. She told me : her blood report has come and it is quite discouraging. many parameters are below range. anyway, we will try to manage, let us see. she anway has to be in hospital for next few days. we will give her antibiotic and some other medicines. anyway, sodium has come back to normal. finally she said – “let us hope for the best. another worry is – once she goes back home, the problem may repeat *prema update, 6 oct, 10pm* today 3rd day at manipal. another 2-3 days minimum. still very weak. small improvement in blood count but lets see. dr poonam will see her on monday morning only i think ( she is not there for sat and sun). wbc, hemoglobin and platelets still v low. otherwise, amma taking rest. we are trying best to give her food but v little she is having today morning fits and unconscious at 10 am after doctor visit. got ok after 10 mins. so taking her for many tests ( echo, chrst xray etc). but many blood counts still low *prema update, 8 oct, 10pm* 1. she slept ok on saturday nite ( first time good sleep in many days) – after having restyl 2. sodium count is ok now, very near range. so i think they will remove neck canula tomorrow morning 3. since she fainted yesterday, a few more tests were done today – doppler test etc ( to show artery block). we will know result tomorrow 4. today is 5th day in hospital, and tomorrow is 6th day. dr poonam will meet her in morning and decide whether she can get discharged. i personally feel 90% chance of discharge tomorrow. so we will discharge her in evening time 5. counselling and dr pramod report ( neuro doctor) will also happen during day tomorrow. will keep updated 6. so as of now – weakness. v slowly blood counts are coming up. but hemo count is always a worry as usual. let us see what medicine or injection poonam prescribes tomorrow 7. i will be in hospital for whole day from 8am tomorrow. i think venu mama and lakshmi aunty will come in afternoon from chennai *prema update, 11am, 9 oct* dr poonam came. “many blood counts have again gone down, so no discharge today also. let us see tomorow” she needs to eat more food. hemo is v less. otherwise no discharge tomorow also —— dr pramod came. “sleep medicine restyl not working now. so i will give u another medicine for sleep, sligtly powerful” —- main point is that prema continues to be in hospital for the 7th day *prema update, 10 oct, 5pm* poonam came in morning. her main concerns – sodium still low, we will put neck saline. instructions given – to give food only when full awake / for sugar always keep sugar sachet and solution ready in hand / sodium we will give tablet / for sleep we will give different medicine —— poonam said i will decide on discharge in afternoon. just now ( 430pm) we spoke to ward sister, she said discharge process has been inititated but doctor summary report not yet come. so even if it happens by 6 pm, hospital needs 6 more hours for other formalities ( insurance final approval etc). so most likely she will be here only for nite and will come home in morning. will update later

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