Preeti's Caregiver Story
GOD'S MIRACLE, POSITIVE HOPE AND SCIENCE
STORY OF REHABILITATION OF MY MOM FROM A SEVERE DAMAGE OF LEFT FRONTAL LOBE
Dr. Preeti Pahal
I am an Indian girl. My mom has been very beautiful with fair complexion, very good height, attractive features and a smiling face. As a typical Indian woman I used to see my mom in routine ornaments i.e. bangles in her hand, a gold chain around her long neck, some attractive tops in her ears, ring in fingers; but suddenly, on 17 July 2006, a completely different personality of my mom confronted me, the cannula, I.V. fluids had taken the place of bangles, tracheostomy had replaced the gold chain, probe of monitor in finger, many new tubes like oral pipe of ventilator, Ryle's-tube (nasogastric feeding tube) in nose, urine catheter etc. were also added. My mom has been a Class I officer in India. That day 17th July 2006, the day which has changed our life significantly was the day when I saw off my mom for her office but was not aware that after few hours something tragic would happen as a consequence of which I would not be able to hear my mom's voice for 3.5 years.
AN OVERVIEW OF HER MEDICAL CONDITION
My mom got a severe head injury because of road traffic accident in the afternoon of 17th July during her official visit to some place because of head on collision of the car with truck. The impact was so severe that two occupants of car died on the spot and another two lost their life later in hospital. My mom and other members were taken to hospital. We were informed about the incidence by the hospital staff. We rushed there simply imagining that there would be few bandages in my mom's forehead and she would be fine otherwise and come with us within few hours. But actual scenario was shuddering. On arrival at the hospital I found my mom was unconscious with no motor response. The cranial CT scan reported an extensive, comminuted fracture of frontal bone and left parietal bone besides multiple fractures involving the frontal sinus, left orbit and floor of anterior cranial fossa. There were multiple areas of bilateral cerebral contusion. Moreover, there were fractures on neck and on right side limbs along with the fracture of left shoulder. Besides these there were many complications in other body parts as a consequence of accident and the doctor told us she was very critical and anything could happen within 24 hrs. After providing her basic supportive measures like transfusion of blood, putting on elective ventilation etc subsequently her craniotomy was done and bone flap was not replaced for additional decompression. For the next few days blood tests, transfusion of blood, blood components, medicines to maintain vitals was a routine. Nearly after one month ventilator was weaned off and eye opening was there but for pain only. She got infection in craniotomy with CSF leak which was managed conservatively with regular dressing. Spontaneous eye opening was there after nearly 2 months but still she was not able to recognize. After nearly 3.5 months of accident she got meningitis which improved using antibiotics as suggested by my mom's physician Dr. Lalitha Sekhar. Following improvement of craniotomy wound and meningitis, scalp flap reconstruction was done to cover the defect but bone defect was still present. Time is really a great changer. Just a few seconds of collision have changed the life of an active, happy hearted lady to a life supported by many machines.
During her stay in hospital I have travelled 10 hr daily for five months, five hours from our city to Delhi then another five for return journey. On arrival at the hospital I used to discuss my mom's condition with doctors and then meet my father who stayed there along with our relatives till her discharge from hospital. I have never wept in front of my father rather provided him strength morally. On returning home after travelling for another 5 hours I use to take care of my younger brother's study since he was promoting from school life to college life and then handled various guests. Until 4 months I have heard the hard words, "anything can happen regarding survival of my mom, be prepared" but I never lost hope and started my journey next day thinking that perhaps this might be the day when doctor would say she was out of danger now. Although my mom was not conscious at that time, but even then I used to tell her all the things I have done during the whole day by assuming that my mom must be hearing all this, although she was physically not able to reply. I asked my mom's neurosurgeon Dr. Pranav kumar, if it would be beneficial for her? He intelligently replied it has no harm. Sometimes me and my brother recorded our voice in a cassette and provided it to the nurse at my mom's bed so that she may let my mom hear that via ear phones on opening eyes. In fact she was made to listen to her favorite songs.
I didn't' give any break to my studies. Rather I used to read during my 10 hr journey in bus because I believed that whenever my mom recovers she might not find herself to be responsible for any discontinuity in my study. Perhaps God has given me extra power both physically and mentally.
APPRECIATION AND GUIDANCE OF DOCTORS
Thus, after so many ups and downs, struggle for life, survival, existence, fight from multiple infections, stamina for multiple surgeries and operations and with intensive monitoring along with intensive nursing care, her stay for nearly 5 struggling months in the Indraprastha Apollo Hospital, New Delhi, India my mom was finally discharged in the month of December, with tracheostomy along with T-tube, urine catheter, and PEG feeding tube. At that time she was neurologically stable, alert, spastic quadriparetic present but with improved limb movements.
At the time of discharge our neurosurgeon, Dr. Pranav kumar told us about recovery of head injury patient to be a matter of time. How long! How much! someone improved cannot be said with certainty. But as earlier he also emphasized on the +ve side and encouraged us by saying that since the very first day my mom was admitted to the hospital and till the day of discharge there were many miracles which may be her survival, fight against meningitis and other accident related problems. This provided us large support morally and emotionally.
The hospital staff taught me many things like daily care of my mom, making her home environment like ICU and told us what basic things we would need at that time etc.
We arranged all these things before arrival of my mom at home like air mattress, suction machines, nebulizer etc. A completely new chapter was added to my life. My mom was alert at that time but she was not able to speak, understand much, and walk. Even she was not able to turn herself on her own. But after all she was my mom. I decided howsoever difficult the task be I would do of my best caring for my mom. Sometimes I got disappointed because my aim was to join IAS (Indian administration Services) but life had changed the plans then an inner voice answered me, If reverse would have happened i.e. if I got the accident would my mom think like this — never. Since that day I never thought negative rather looked forward and tried new and better methods for her recovery.
Initially we kept a nurse to assist. Soon I learned the routine things and did not needed her. My day started with her morning medicine, morning exercise, cleaning her motion, sponge bath, periodic feed at the intervals of 2 hrs, dressing of peg-fed, tracheostomy, suctioning as per need etc. Moreover, we kept a physiotherapist for her limb moment.
As per our orthopedician, Dr. K. B. Attri's advise, we started her wheel chair sitting for maintaining back muscles for half an hour or more depending upon her comfort. Sometimes twice or thrice a day. We use to take her outside in front yard and backyard, jaunt her on chair in all the rooms in home but taking due care of T-tube, PEG feeding tube, urine bag. We used to put moist gauze at the end of T-tube so as to prevent sand particles and any small mosquito etc. from getting inside. We continued this every day. Suddenly one day I found she started responding to sound. Whenever, she heard any sound like traffic horn etc she turned her neck towards the side of sound source. This response soon got enhanced towards multiple voices.
START OF ORAL FEEDING
One day the PEG feeding tube accidently got out. We all feared much and contacted our doctors at Apollo hospital, New Delhi. They told us it to be okay it happens some times. They let the scar of PEG feeding tube to heal and provided my mom with Ryle's Tube and advised to start oral feed with soft diet. This was truly a positive indication from God because if the peg had not come out, we might not have been able to start my mom's oral feed.
I started with boiled potatoes, thick custard and even the soft baby feed like Cerelac. Initially the diet intake was a few spoons which improved with the passsage of time. Liquid was also tried orally starting with a few spoons. The major liquid intake and medicines were however provided through Ryle's Tube which needed to be changed at the interval of 20-25 days depending upon the condition. Soon by guidance of doctors I learned to change the Ryle's tube and even tracheostomy tube.
PROVIDING PAIN FOR HER COMFORT
Sometimes I felt too bad as why the luck had given me such a rock-strewn task of providing pain to my mom as suctioning, change of Ryle's Tube, urine catheter and physiotherapy of limbs (so that these would not get stiff) were painful. But I had to make myself somewhat tough since it was the need of the hour and much necessary for preparing my mom for the day when all these tubes etc would be taken out.
TRACHEOMALACIA — RESPIRATORY PROBLEM
Everything was going fine. Although gradually but certainly situation were changing for the better. Oral intake of soft diet and liquid was improving. In fact even the tracheostomy was decannulated in Jan 2008. Nearly after 2 months of removal of tracheostomy suddenly one night my mom found difficulty in breathing. There was loud noisy breathing (stridor). The destiny played a very ugly game with us. On that day, there was a famous festival of India — Holi, festival of colors. Everyone was celebrating that but we were facing such a deep trouble because of the day of festival we got the ambulance with great difficulty. We had to rush to Apollo Hospital, New Delhi. I have no words to express our situation where every second was becoming alarming and raising the fear in our minds. The doctors there confirmed it to be Tracheomalacia (a condition characterized by flaccidity of the tracheal support cartilage which leads to tracheal collapse and the trachea may become so narrow that it becomes hard to breathe) and consequent to it tracheostomy was replaced. Although we were all disappointed but positive aspect was that her life was safe.
Although this incidence had lowered our confidence but was not able to shaken our faith in God and we started with the same routine.
Earlier the sounds of ambulance were terrifying but those days these had become part of our life. In fact travelling to Apollo from our residence was also like a big test of life because of my mom's condition and the 5 hrs run at that stage. We used to take the manual suction machine and other such things for any need in the way. Rather I kept a bag ready for any such emergency.
ANOTHER PROBLEM EMERGED — OSTEOMYELITIS
Meanwhile I joined Ph.D. in organic chemistry. Although it was very difficult for me to manage all the tasks i.e. extensive lab work, my mom's care, managing home, since all things needed a large contribution of time and labor. I do not know how but certainly God had given me enough courage to manage all this. Moreover the support of my father and my younger brother's help can't be forgotten.
The destiny has set another test of bearing pain for my mom. That was osteomyelitis (infection of bone). The rod implant which was placed for the union of right femur fracture got infected. It was physically visible by the large lumps of swelling on the lower side of thigh and pain and finally pus discharged. I talked to my mom's orthopedician, Dr. K. B. Attri, at Apollo Hospital. They confirmed it to be an osteomyelitis by x-ray analysis and other necessary tests. In nearly a year she was operated twice for it. But even after that, this started recurring after every 2-3 months, sometimes 6 months. Each time dressings, antibiotic treatment (sometimes intravenous, other times oral) were done. However, we never missed the normal routine, indeed our orthopedics suggested chair sitting for my mom to be very important to deal with osteomyelitis and we, off course, obeyed him.
That year, 2008 was really very hard because if we moved 2 steps forward suddenly something happened which (on analogy to a backward direction reaction as it is found in my subject chemistry) forced us to march four steps back.
Sometimes we were all very disappointed, but soon we regained our enthusiasm, by remembering that a ray of light destroys the darkness of night; howsoever longer the night is.
ANOTHER PROGRESS — REMOVAL OF RYLE'S TUBE
By acquiring, the grip and pick of hand, one more important step was achieved which was removal of Ryle's tube. Now my mom had become considerably alert and her speedily improving left hand movement assisted her in getting rid of R.T. (Ryle's tube). She had become very clever. At night, on finding that everyone was sleeping she used to take out the Ryle's tube by left hand put it silently aside. On morning this surprise was waiting for us. We all felt as glad for this naughty activity of her as a mother feels delighted on the pranks of her child.
This time God was giving us indication for a new step i.e., oral intake of fluid had considerably increased. We tried to reinsert Ryle's tube but every time result was the same; she was not tolerating that tube anymore. Within a few days her oral intake of both fluid and food became normal. But still another significant problem was there — how to give her medicine which was otherwise given through R. T. To find the solution to it, I remembered my childhood event. Whenever I got ill in my childhood my mom use to give me medicine by dissolving it in water in a spoon along with a little sugar.
- I tried the same thing, but all in vein. At that time my mom's taste sensation had become so strong that she used to reject it by spitting out from her mouth along with the peculiar facial expression for bitter taste as found in us.
- Then I tried it by mixing with feed like sweet custard which was also not successful.
- Finally I got the way with tea and biscuits. I use to mix the crushed medicine with biscuits soaked in tea with some crushed sugar. Then I use to give this homogenous paste by spoon along with bites of biscuit soaked in tea.
Thus the main problem which emerged after removal of R.T. was solved.
THE DAY WHEN MY MOM TOOK TEA BY HER OWN HAND
Every day my life was teaching me a lesson. After so many setbacks, there were gains like my mother started holding her neck, left hand movement got highly efficient, left leg movement got enhanced and right hand movement improved at finger and clavicle bone. Although right leg bending was feeble but the feet showed up and down movement.
One day I tried a new thing. I, gave a cup of tea to my mom, in her left hand. She held it instantaneously and sipped the tea in cup by her hand so fast that she will satiate the long will to take tea by her own hand in just 2 minutes, which was otherwise suspended because of her neural status. After this new achievement, I increased her hand activities.
SITTING BY HERSELF
The tracheostomy was decannulated in Jan 2009. The removal of tracheostomy and Ryle's tube paved the way to many things, since, a lot of care has to taken for handling these while doing any new thing. Due to routine physiotherapy and regular chair sitting, my mom's back got enough strength to sit without support although initially it was for a brief duration. I use to let my mom sit over the side of bed with legs in hanging down position, initially supporting her back with pillows as without pillow support she use to fall backwards. I kept on repeating this day after day. Soon her back gained enough strength that pillow support was no longer needed; rather, sitting without support was maintained for 2 minutes, then 10 minutes finally up to half an hour. I used to do this 3-4 times a day.
But the whole procedure was not as easy as it seemed. Initially my mom felt pain in back while sitting and use to cry. I tried to divert her mind by counting. I use to ask her sit till I count 100 for 5 times, sometimes up to 10 times depending upon her stamina to sit. This trial was very successful. In fact I was achieving two things this way, one sitting other her mathematics was improving.
ACTIVITY TO INCREASE HAND GRIP
While making my mom sit over the side of bed with legs in hanging down position, sometimes I used to give a few coins in her left hand and asked her to throw these on floor. Initially she was perplexed and was not able to decide whether to throw the coin or not. But slowly I persuaded her to do so. Nearly after 10-15 days she became confident enough to throw the things. This way she learned physics i.e. the effect of gravity. Then I taught her about fixing targets by asking her to pick objects at one point then throwing at specific place just like game of arrow hitting the mark.
Moreover, through this coin picking activity I made my mom learn about the difference of picking things one by one or collectively. Sometimes I use to ask her to pick 4 or 5 or more coins. One time she was correct on other time may make mistake, but soon she got the perfectness.
ATTEMPTS TO RECALL MEMORY
We made many attempts in this regard. I use to show my mom our photo albums. Earlier when the attention was low and eye fixing was not gained even then, we use to show her photographs on the same side where she looked. Not only that but we tried to focus her on television also. For this also sometimes she paid attention to television another time she showed no curiosity. But we tried it every day without thinking that we were not getting enough results. Soon just like ripening of crop our labor brought fruit i.e. my mom started focusing on things and gained attention. I use to recall her memory by pointing my finger to a particular relative and tell about her relationship to that particular relative.
During Jan., 2008, there was persistent bulging of craniotomy flap and my mom got somewhat drowsy. My mom's neurosurgeon diagnosed it to be hydrocephalous (abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain). A Ventriculoperitoneal shunt was inserted resulting in disappearing of craniotomy flap bulge and my mom became more alert.
To my great surprise, one day a very different activity occurred. When she gained her left hand movement, I asked my mom to find out a particular relative by pointing with her own finger. She did it successfully. Rather she performed a new thing, one day she took the album in her hand (I supported it from other side as her right hand moment was still feeble) and started turning pages of photographs album, flipped through each page, as someone does while reading a book.
We used to take her to different rooms of our home on wheel chair, showed her objects, her saris and dresses, almirah, played her favorite songs, etc.
The time has tided me in a new relationship with my mom and the destiny has made my mom to be a daughter of mine.
TASK FOR REMINDING PLACES
As a consequence of tracheomalacia, the tracheostomy was done again as I cited earlier, but nearly after 10 months it was decannulated as per our neurosurgeon's suggestion.
Thus after nearly 3 years of my mom head injury, the main tubes tracheostomy and Ryle's-tube were removed but one tube catheter was there. We started a new thing. Earlier we used to take my mom around inside home. We wheeled her to our backyard, front yard etc. This proved much useful in gaining sound sensation, alertness and most importantly an indirect way for exercising her back muscles.
One day, I thought why not we expose my mom to outside world as the infection causing tubes were not there. Taking her outside on wheel chair was not practically possible, because of left frontal lobe craniotomy. So, we decided to take her outside in a car. Although, initially it seemed very difficult as the whole procedure involved firstly shifting my mom from bed to chair, then from chair to car seat and most importantly the catheter was to be taken care of but me, my father and my brother managed all this with due precautions.
POSITIVE EFFECT OF OUTSIDE ENVIRONMENT ON MEMORY
Initially on the way I used to tell my mom about the things on left side (like hospital) and right side (like college) and then, on returning after a U-turn I told her that the things on left had become right and vice-versa.
I kept on repeating these things. Sometimes we used to jaunt same streets for few days so that she might recall these places. Another time we changed streets, took her to market in car to let her explore new places. We also used to go to our village where the old known places and the greenery of fields further proved to be a boon for memory.
Finally I got the fruit of my labor. All these efforts proved electrifying effect. In fact, she started distinguishing between the things on right and left side. When I asked her what was on left side, she replied correctly, for instance, she rightly distinguished the left, right and face-to-face location of hospital and college respectively. Not only this but she also used to object when we changed the routine roaming track.
After nearly 2 yrs of discharge of my mom from hospital I contacted the speech therapist. Although the neurosurgeon told us about little chances of speech because of large damage to left frontal lobe but I decided I had to make my mom speak. We consulted speech therapist. He told me that very first thing I had to do was that I had to try whether my mom would be able to blow in to flute or not as by doing so her vocal cords would be activated. I tried it fearing whether it would work or not. But by God's grace the trial was very successful she blew in to flute so nicely. We were all very happy. I told this to the therapist. He told me the next step which was to make my mom recite normal things like week days, months; emotional events, like weeping, laughing, etc. For this he provided me a chart where pictures representing normal things like emotions (weep, cry, happiness) and relations (like father, mother, children etc.) were present. I tried all these things. Even I used to read newspaper, placing it in front of her, telling her significance of words and pictures printed on it.
After nearly 4 years, on December 10, 2010 suddenly, my mom started uttering some words. I just by chance, asked her about my name, her name, our relative's name she spoke out immediately. I was so happy. In fact every time she spelt out exact words. I contacted the speech therapist, he told me to let my mom learn more words. We all practiced in our own way. I thought watching T.V. and reading newspaper to her provided a great impact. Earlier she used to point out relatives in photographs with finger, now she started recognizing them by calling their name. Soon she started speaking sentences like "I need tea, give me breakfast, I want to go outside", etc. Slowly the pronunciation also improved.
As I mentioned earlier, I used to count while making my mom sit. When she started speaking I used to ask her to count for 20, 30 etc. herself while sitting, depending upon her mood, as now she sometimes exhibited obstinate behavior like a child. Sometimes I asked her to tell me tables, week days, months, prayers, songs etc while sitting on the side of bed. She learned all these things. I feel much delighted on hearing maths tables in my mom's voice. Now my morning really becomes good on hearing good morning from my mom.
The God has given us a new ray of hope.
One day my brother was listening to an old movie song while working on his laptop. Suddenly my mom started singing few lines of that song. All of us were pleasantly surprised. Then I sung half a line of her favorite song to her and asked her to complete it as much she could. She completed some of the remaining part.
Working on this strategy, I used to speak only some part of idioms and then let my mom complete the remaining just like a teacher performs while carrying out the test for filling in the blanks. She did it perfectly.
LEG MOMENT IMPROVEMENT
As I mentioned earlier in order to increase sitting activity of my mom I used to let her sit over the side of bed with legs in hanging down position but with some support at bottom so that legs might not feel pain while sitting in this position. I used to remove the support frequently for a few minutes in order to enhance strength of her legs. Sometimes I use to ask my mom to move her feet to and fro until I counted 10, then 20 or 40 etc. depending upon her stamina to bear pain. As a consequence of this activity her left leg got good strength but right was not gaining much.
Then I thought of a new idea, I took empty containers of Telkom powder. I filled them with marbles of different numbers in order to create different weights. For the left leg, being good in strength and activity, I took box with large no. of marbles i.e. higher weight and asked my mom to kick that till I count 10 or 20 finally the stamina reached up to 40. She did it very well. I was not expecting that she would perform the act so quickly and efficiently.
The right leg, being less strong than left one, was made to kick box with less number of marbles i.e. lighter weight. Initially it was slow, but with time the right leg also gained strength and its pace to kick became faster.
Soon the weights for left and right leg were respectively increased which ultimately enhanced moment of both legs. Moreover, this was indirectly making knees exercise.
PRESENT STATE OF HEALTH
Now nearly after 7 years of accident, my mom who had been a vegetative head injury patient with only alertness has turned out to be a person with good understanding and speaking ability. The movement at right side although weak is much improved and the left side has become very efficient. I strongly believe that soon my mom will also start moving on her legs and my dream to go market with my mom will come true.
There is a gradual transition of her personality to the original one i.e. ornaments at neck, hands, ears; talking, laughing, weeping and with many other emotions. She has become fond of watching Television and enjoys delicious food. As a chemistry student I can stop myself writing that it has happened like a reversible reaction in chemistry but as 2nd law of thermodynamics says "every process is accompanied by entropy" the reversal in backward direction is not cent percent as for forward direction.
Through my mom's story I want to tell the whole world that the recovery of a severe head injury patient is painfully slow. Please do not lose heart and courage when your loved ones have to face such a big medical problem. I was at the age of 20 when my mom got accident and during these 7 years I have learned the whole life experience. If we try by heart, God will certainly support that. I strongly oppose Euthanasia. I want to share my experiences so that the persons who have already suffered due to their destiny should get support from their family. It is really our test set by God to find how much we are concerned about our loved ones.
My mom's case is well known to many people in our city. These days many people come to me for guidance regarding their family members who have got such sufferings and became bedridden, in order to know all what I have done for rehabilitation of my mom after such a severe brain injury. The great scientist "Stephen Hawking" is inspiration to us. At last, but not the least, I want to share a moral which I got from the very famous Thirsty Crow story — "where there is will there is certainly some way – addressed by destiny and constructed by us".