Nagalakshmi Dhanaraj

Tribute

I was born when my Mum was 38. It was considered a miracle. Being the only son, my parents loved me a lot and my mum in particular was my best friend first and then a mother. We used to do a lot of activities together and shared lot of common interests. She was scientist and retired in 2002. She had lot of plans of travelling around the world and seeing places. All this remained a plan. Out of the blue in 2008, the day after Christmas she suffered a stroke.

Her condition was diagnosed as left hemiplegia due to RHD (rheumatic heart disease) and blockage of the right internal carotid artery. They expected her to recover fully, which she never did and was paralyzed on the left side. After a month of rehabilitation we returned home and she was able to walk around the house, though not as before. We had a full-time care taker who became a caring friend over the past 3 years and helped her with all her everyday chores. She also had a clot in the heart (due to RHD) and so she was on constant anti-coagulants (blood thinners) and anti-platelet tablets. Later on she also developed pulmonary edema due to which she was taking diuretics daily as advised by our family doctor.

October 2011

On October 22nd, 2011 when I visited home over the weekend, my mum complained that she hadn’t passed urine since morning. But just as I arrived she had passed it and so I did not think much of it. By evening she complained of pain in the inner leg and the home care nurse suggested a pain killer – slow declofenac which we administered immediately. She said she was better the next morning. I felt everything was fine. I returned back to work on Monday and kept in touch with her on phone everyday. I worked at Bangalore and my hometown was Mysore – a 2-hour drive.

On Tuesday, the 25th evening, she complained of “shivering” and “fever” at around 5PM. It was also raining heavily and we thought this was not a big deal. She was given few antibiotics as recommended by her physician who used to visit her once a week. On the 26th morning when she called me, she asked me if I could come home. It had been just 2 days since I saw her and I told her I would try, but anyway I am coming for the weekend as usual, I reassured her. I didn’t get to talk to her until evening as she slept through the day and even skipped lunch. Evening, when I called, she sounded cheerful and I felt she was improving. But, that night she suddenly couldn’t walk and squatted on the floor. With the help of the physiotherapist, who stays nearby, she was shifted to the cot and she slept well.

I was told about this the next morning and I rushed home on the 27th, found that mum continued to have shivering fevers. The doctor visited and gave a stronger dose of antibiotics. The whole day she couldn’t walk and the fevers continued at night with shivering. The whole day she hadn’t passed urine and we gave her the diuretics she usually took, after which she passed urine during the night sleep. We were relieved, but I suspected something more than a “viral fever” as our doctor had said.

October 29th, morning, mum was too sleepy. She couldn’t even keep her eyes open to eat breakfast. I asked her if we should hospitalize her, and she said, “You think and decide”. Her face was also swollen. By afternoon we summoned the ambulance and rushed her to the hospital.

She was put into the emergency and the neurologist whom she had been consulting visited her and we felt assured. A junior doctor ran some initial tests, found oxygen saturation levels low. Soon, a senior doctor arrived and took stock of the situation. We filled him on the various medications she was taking – anticoagulants, BP regulators, diuretics etc, they did a chest X-ray and probably felt it was a “UTI”. They did a urine routine and confirmed urinary tract infection (UTI). She was put into the ICU. It pained us to leave her alone there but we had no option and we felt it’s such a trivial thing as a UTI and that she would soon be all right.

We visited her over the next 2 days and I observed that they had not put a urine catheter and had trouble giving her a bedpan since she was bulky. She was cheerful though but felt traumatic to be in the ICU. I assured her she would be out soon and finally on the 31st October the doctors said they would shift her to the ward. I was late in arriving at the hospital and mum was very drowsy when I arrived at around 11AM and so I left her to nap for a while and made arrangements to be shifted to the ward. They said they would shift her by 2PM, then we waited upto 4PM and still there were signs of shifting and we got restless. We finally got word that she was in “deep sleep” and that is the reason she could not be shifted. At 6PM the doctors suspected something was wrong, did a blood gas test and found out Co2 levels were bit high and also did a CT scan. The CT scan showed a brain hemorrhage. It was SAH (Subarachnoid hemorrhage).

November 2011

Mum continued to be in coma on 1st November and 2nd. In the meanwhile, they put a urine catheter and in the process observed that she had a prolapsed uterus.

We had an endless stream of visitors who visited, prayed and offered comfort. Many of those who visited and me and dad also thought this was the end. It also took us sometime to understand that she was in a coma as doctors would only use the word “deep sleep”. I checked on the internet that those who suffer SAH can have short term memory loss and that people could be in coma for days. But, to our joy Mum was fully conscious and awake on November 3rd. It seemed to be a miracle. We met her and spoke to her in the brief interludes of time we were allowed into the ICU. She seemed to have forgotten where she was and what happened to her. November 4th was her wedding anniversary and she could not remember that. However, she strongly refused to take off her wedding ring when it was suggested that it be removed.

On November 5th, she was shifted to the ward. She talked well, had a good appetite and ate well. She was on oxygen support and saturation levels, pulse were measured on a constant basis. I was so happy that things seemed to be back on track. Doctors had blamed the SAH she suffered as a result of the anti-coagulants interfering with the antibiotics they gave for UTI. Anti-coagulants were stopped only after SAH was observed.

However, our joy was short-lived. On the 6th morning, mum got the shivers, fevers were back. She slowly lost consciousness sometime after she had breakfast. Doctors recommended moving her back to ICU and did a CT scan. They did not find anything new in the CT Scan and moved her to the ICU. They said she had pneumonia and had put her on stronger antibiotics. Mum recovered slowly and after 3 days in the ICU, she was moved back to the ward on November 10th. There were changes in her mental state. She constantly kept forgetting the doctor’s name, where she was etc. We thought all this was due to SAH. She continued to be given antibiotics and oxygen in the ward. By now, I was taught to look at the monitor and keep constant watch on the saturation levels. Mum recovered consistently in the ward, but all of a sudden the saturation levels kept dropping on the night of November 15th.

On November 16th, she was taken back into the ICU and put on a BiPAP machine (a ventilator) to keep oxygen levels high. Since the whole period of hospitalization they had also stopped diuretics which she took regularly at home. Now, they said more fluids were present in the lungs – “pulmonary edema” and re-started her on a stronger dose of diuretics – lasix. Mum was moved back to the ward on November 18th.

By now, I had become slightly weary of the treatment given and so asked the doctor to give me a letter stating her condition. I said I wanted this letter to take a second opinion from a different doctor. The doctor obliged and by evening I had a 2-page letter. This was the first time I saw the word “Sepsis” being used. He wrote stating that this 69 year old lady was admitted due to UTI + Sepsis and in the end of the letter also wrote “UTI + Sepsis resolved”. I did not know what Sepsis was and thought probably this was a medical term for urinary infections and did not probe further as he had mentioned it was resolved. The current problem for my mum was termed as “obesity hypoventilation” due to which her saturation levels were low.

Mum was now maintaining good oxygen levels with the BiPaP and on the 18th of November they decided to move her back to the ward. Mum was back and to my surprise, she had no memory issues this time. She remembered all current events (no signs of short term memory loss which I had observed previously) and we were happy that things finally seemed to be coming back to normalcy. It was decided that she would be given 10mg of diuretics per day (though she took 15mg/day at home they settled for 10mg), BiPaP would given for 8 hours every night and during the day time, she would be given oxygen through prongs. As they had stopped her on anti-coagulants and anti-platelets due to SAH, they wanted to resume anti-platelet medication. By now, the CT scan showed that the SAH was resolved and an MRI was done which showed a probable “vascular malformation”. The neurologist wanted to do a CT Angio to confirm this, but said that could wait for sometime.

Meanwhile, I took the letter given by the doctor and met a physician from another doctor who went through the reports and all the details I had. The doc repeatedly asked me if Mum was on ventilator. When I replied in the negative, he concluded that she is improving and believed mum would be discharged in a week or so. He also, did not say anything about “Sepsis” but cautioned me that extended hospitalization would not be good for my mum. She might get infected again and that could be dangerous he said. However, I was happy to hear that mum could be discharged in another week and this made me more optimistic.

Mum continued to improve steadily and again out of the blue a new problem surfaced on November 22nd. She was having black stools (indicative of internal bleeding). They stopped giving her anti-platelets and wanted to do an endoscopy but my mum did not agree and we also did not want to force her. We preferred to wait and watch and so did the doctors. She had black stools for 3 days and they have her blood transfusion. Diuretics continued at 10mg/day, no anti-coagulants, no anti-platelets and bipap for 8 hours at night. Even as we eagerly waited to see the current problem of black stools being resolved, she developed shivering fevers again on the 26th. She was given an enema that day since she did not pass stools and my mum blamed the enema for the fevers. She told the doctors “I want to go home, I am fed up of antibiotics and please do not put me into ICU again”. I felt pained when she made this statement.

On the 27th, she had loose motions. She kept passing motions throughout night and into the morning of 28th. We thought it could be due to the over dose of laxatives. She was usually given 10-15ml, but that night she was given 20-30ml since she complained of not passing motions for 3-4 days. The urine output had also reduced and the urine routine’s suggested that UTI had resurfaced. I probed the doctors if the “prolapsed uterus” could somehow be causing recurrence of UTI but they blamed it on urine catheter and changed it to a new catheter. Urine culture report was ordered.

The loose motions stopped on 28th afternoon. There were no black motions/blood in the motions’ which we thought was somewhat of a silver lining. By evening one of the doctors seemed to be concerned about her BP which was lower than usual. It was 95/70 she said. As mum was fairly conscious they did not consider it worrisome. A couple of hours passed. At 8pm, I tried waking her up for dinner. She did not respond. I waited for 10mins after which I summoned the doctors. They moved her to the ICU immediately and put her on inotropes!! Nor-adrenaline was given.

This was the fourth time she was been moved into the ICU from the ward. And it was also a month since she was admitted. I was concerned. Why the low BP I asked the doctor the next day. He said it could be due to the loose motions leading to dehydration. It seemed to be convincing. The urine culture report showed my mum was now resistant to most drugs and was sensitive to only one drug, which they started administering.

Mum spent 2 more days in the ICU. On the 29th she was perfectly fine and in good state of mind. Very sharp and clear as well with what she wanted. On the 30th, too she was good clarity of mind when I met her at 6pm. I returned into the ICU again at 9PM to feed her the dinner. She was mentally disturbed. She kept making repeated requests to take her along with me. She wanted to go to her “office” and spoke of certain “experiments” that needed be done soon. (She was scientist and had retired in 2002). I was surprised. Her condition taking so many twists and turns, I thought lets wait and watch.

December 2011

The next day she scolded the doctors for keeping her at ICU and they shifted her to the ward along with reduced dosage of Nor-Adrenaline being given. She was sleepier and not very alert. Her sleepiness continued to increase and my Dad was concerned about this by December 3rd. Doctors put a Riles tube to feed her. (This was also the fourth time that the tube was inserted since her hospitalization). On December 4th, after I insisted that the doctor do a ABG (arterial blood gas, to check how much oxygen is in the blood), it was done. They found Oxygen saturation was ok but the Co2 retention was more. The value was 56. The earlier decision of giving her the BiPaP every night was not adhered to when this new problem of low BP surfaced. So, she was not on BiPaP for a week now. They put her on BiPaP that night and by next morning the Co2 levels had come down to 51.

By now, I was very unhappy that the hospitalization did not seem to come to an end. I got another “status letter” from the doctor and met a few doctors from other hospitals. A neurologist I talked to said SAH is not at all problem since it’s fully resolved and asked me to “forget” about vascular malformations. A few others suggested that we move her out since the current hospital did not have a pulmonologist and the physician had to make decisions alone. Finally, on the 6th of December I met a very senior pulmonologist who went through all reports and letter which stated that low saturation levels were due to “obesity hypoventilation”. The doctor had also mentioned that UTI had resurfaced and being resolved.

The meeting with the pulmonologist firmed up my mind that we should shift mum to the other hospital soon. I shared my findings with my dad who agreed that we shift mum. But since, she was on insurance we were in a dilemma if we should wait for insurance to process the payment or should we rush through the process, pay by cash on our own and shift her. Her hospitalization being a long one, the insurance clearance could easily take few days. My dad said, let’s wait for the insurance clearance. I reluctantly agreed. By the next day December 7th, mum’s condition deteriorated. She became fully sleepy. She wouldn’t respond to our talk. Inspite of the BiPaP being given her Co2 levels continued to be at around 50. I was angry that BiPaP was given intermittently. Also, whenever they connected the BiPaP the saturation levels would drop. This made me feel that the machine was not handled properly (settings improper).

That night as I sat next to Mum holding her hands (she hadn’t opened her eyes the whole evening), she suddenly opened her eyes around 1 AM. She patted my head briefly and I was delighted. She made signs for the BiPaP to be removed and I nudged her back to sleep saying it had to remain. By 2AM she started groaning and the monitor which showed her Saturation, pulse rates went blank. I summoned the nurses and they tried to set things right, but in vain. A doctor was summoned and Mum was put into the ICU for the 5th time. It was 3AM. At 4AM I was summoned into the ICU and asked to sign papers as they wanted to put her on ventilator. I reluctantly signed them. She was being intubated even as I signed them and it was so painful for me to watch. I was confused, sad and angry all at the same time. I felt they had not used the BiPaP effectively which had led to this. But actually, Mum had suffered a septic shock, some of her finger nails had turned blue.

The next morning we met the doctor and he told us mum had severe pneumonia. (There was no mention of sepsis or septic shock). I felt overwhelmed that even after such a long hospitalization things were moving in a cyclic manner. We told the doctor, we wanted to shift her to another hospital. The doctor said “sure, anytime you want” and walked away. We made arrangements to shift her. She was shifted with utmost care.

I thought the worst was over but I was wrong. On the night of December 8th, we were apprised at the hospital that Mum had “Sepsis”. For the first time I heard someone mention the word to me and I immediately looked up on the internet. It didn’t take me long to know this was serious. I took printouts and handed it over to my dad so that he could also know what Sepsis was. After this, I had a 1 hour meet with the doctors about Sepsis. They said the good thing was mum’s kidneys were still functioning. They explained the drugs which would be given to her. Things looked as best as they could be. On 9th morning her kidneys had stopped working. Dialysis was done when her BP had raised to 133/40, again something which gave us hope, but soon her BP continued to be low and remained at 60/30 or so. She passed away on the 10th at 3.15PM after congestive heart failure.

In her passing, I have lost a friend, counselor, prayer partner and much more. She was a very dear Mum. Everyone praises me for being at her side during the whole hospitalization. But the more I think of it, the worse I feel that we were kept in the dark about Sepsis. As I recall the chain of events it seems to me that it was a long battle and ultimately due to some carelessness her condition worsened further. This website and the stories shared here clearly showed how easily lives can be lost and how crucial it is to treat the patients in a timely & diligent manner.

I did not see anyone from India posting on this site and so I believe that not many know about Sepsis here. Until 48 hours before my mum died, we only thought she was suffering due to Pneumonia/Obesity hypoventilation etc. I hope the detailed account shared over 40 days of hospitalization is not too much to post on this site.

God bless you for your work. Hoping that Sepsis would be taken seriously even in India and the day hastens when we have a CODE: SEPSIS here also.

 

Source: by Prabhu Dhanaraj (son)

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