Spinal Cord Injury Warrior and Rehab

Dear friends,

I'm Sandhya Rohit's wife, on 4th Dec 2022 Sunday, My husband Rohit had a life-changing event that left us in despair. Rohit is usually a very active and hands-on dad. He likes hiking, going to the gym, and doing outdoor activities with our son. We enjoy his cooking which can go on for hours. The morning of 4th December he got up complaining about weird pain in the left arm. He described it as electrocuting pain, his arm started twisting and got very stiff. I was holding him and trying to understand the situation along with our toddler who had to wake up to all this crying. It was 7 AM when Rohit first described his pain within 5 minutes he just collapsed in front of us. I had no clue whatsoever. It just happened to him, from left arm pain to suddenly collapsing. With uncontrolled tears and a terrified toddler with me, I gathered myself and pulled him near the sofa where I put his head on pillows. He was complaining about breathing difficulty, his breathing was shallow with a lot of effort to breathe in and out. I quickly dialed A&E and explained everything including his breathing situation. At first, A&E gave a 2hrs estimate meanwhile I called all our friends. With his breathing getting more difficult, I updated A&E with the latest situation about his breathing, they expedited the ambulance call. All our friends rushed to our place, luckily the Ambulance came in 45mins.

The ambulance crew checked his statistics, lifted him in a carry chair, and took him in an Ambulance. By this time our son was very terrified, for the first time I had to leave him at our friend’s place to be with Rohit. One of our friends came along with us to the hospital for my support. To this point, no one knew what happened to him, to the A&E crew it looked like a stroke, so they took us to a stroke-specialized hospital, Northwick Park Hospital in blue light. There doctors took him to the acute ward to do his examination, he was already on oxygen by now. While waiting outside with my friend, I called Rohit’s family as we don't have family in the UK. It was the hardest part for me to tell his father about what had happened. It's because I didn't know what is the diagnosis as doctors are still performing tests on him. It was very emotional for his parents, they mentioned traveling immediately to be with us.

Meanwhile, a CT scan was done, Rohit’s attending doctor informed me that there was some abnormality near the spinal cord, at a very high level so, they are immediately referring him to Imperial Trust, along with sharing the images and scan reports. At this stage, he could not move anything other than his head. One of the hospitals in Imperial Trust accepted him for the treatment. We then started our next journey at 11 pm the same night in a blue light ambulance to another hospital.

Journey

The critical hours!

After being shifted to Charing Cross Hospital, he was in the A&E acute ward where after checking his vitals they prepared and took him for an MRI scan. It was already post-midnight, and he was still waiting to be transferred from the acute ward to the ITU. Finally, at 4 AM the next day, he was transferred to the side room with all infusion pumps, oxygen masks, and a lot of noise-making devices.

On the 5th evening, doctors reviewed his MRI scans with neuro, IR, and ITU consultants. They concluded acute onset quadriplegia secondary to cervical cord hemorrhage from Anson and Spetzler Type II (glomus-type) cervical cord arteriovenous malformation was identified. In simple terms, it is a spinal cord injury non-trauma at cervical level C4 which damaged the spinal cord leaving him quadriplegic. After examining the scans IR decided to perform angiography to locate the exact AVM aneurysms so they could decide on the next set of treatments.

His first embolization was on the 6th Dec, doctors could only embolize 70% of the AVM. They transferred him back to his room in ITU with all the infusion pumps and asked nurses to keep the vitals stable. He got a chest infection the following day, and due to his very high level of injury, he couldn't cough out his secretions. Nurses had to suction his secretion by putting a suctioning tube through his nose. I could see his eyes and face in pain whilst suctioning but I knew it was essential for his survival.

The Days!

After his first embolization, doctors made a plan for his next embolization to tackle the remaining 30% depending on his condition. In the next few days, his condition was more or less the same. He still needed oxygen, pain relief, and timely suctioning to keep him stable.

I visited him daily with my in-laws. I dropped my son at the nursery because he was too small to come to ITU. Although Rohit always asked about our son and was very desperate to see him, as he never lived without him before. 5 days later, doctors decided on another attempt at embolization. This time due to the nature and complex location, the procedure went on for a longer time compared to the last one. Finally, he was out of the operation, being intubated with this unsuccessful attempt at embolization. The doctors explained how much they tried, what happened in the OT for the last 3 hours, and suggested not going for 3rd embolization now as it cannot be very helpful.

The weeks!

On the 11th day of his hospitalization, he got a severe lung infection which put him on a back foot. The ITU consultant had already mentioned tracheostomy as a long-term consideration along with a ventilator due to his high-level spinal injury resulting in his low lung functionality. But before that, they intubated him for a couple of days. That was the last time he talked to us that year after they did a tracheostomy, he was on the ventilator and just used lip movements to communicate. On 25th December with a special request from the nursing staff, they agreed for our son to see him. This was very emotional for all of us but worth it. In a few days, the ITU physiotherapist started his ventilator weaning. The first few days were terrible, he couldn't be without a ventilator for more than 15 minutes without his blood pressure dropping. For this blood pressure drop, he was then given medications using a transfusion pump. So the initial start of his ventilator weaning was not going well for him but then one good thing happened by the end of the year, he flicked his left hand. This gave us hope and I'm sure to him also some hope and confidence that life is not that bad after all. But this flick has just remained as a flick for a long time and his vent weaning was also very slow, it was like 1 step forward and 5 steps backward. They also tried the speaking valve, passy muir valve(PMV) a few times but he couldn't talk as his muscles were very weak. Being in ITU, a few of his friends came to visit him to cheer him up.

The Months!

On 10th January, he was repatriated to Northwick Park Hospital ITU for his ventilator weaning. Due to his spinal cord injury, he was referred to the Stoke Mandeville NSIC but with a ventilator on there was a long waiting queue. Everything was reset here, respiratory physio started a new weaning plan that aligns with the Stoke Mandeville NSIC. The nursing staff was very amicable and the OT looking after his case was brilliant. In January mid, for the first time, he moved his right hand, and also his ventilator weaning improved a bit. His OT started working on his sitting on the bed and the first time was hard for him. He couldn't sit on his bed at 60 degrees for more than 10 mins, he passed out due to low blood pressure. By this time we all knew that a lot of work had to be done to teach and train every muscle below the injury. Things were progressing slowly but our friends kept visiting and with special permission, he was able to see our son. His respiratory weaning started to improve and now he could be on passy muir valve(PMV) also for longer durations with breaks. By mid-February, he could use his right hand to hold small things, his left hand could extend and flip, and he could be without a ventilator for 2-3 hours with PMV on. Still, his food, medication, and water were through NG feed. His OT tried hoisting him with a ventilator onto a wheelchair, he tried for 30 minutes and was hoisted back. With a lot of things going on in parallel, there was hope in all of these and positivity. Slowly and gradually he tried hard to wean off the ventilator, on 9th March he was free from tracheostomy as they ‘decanulated’. This gave us tremendous confidence, positivity, and a feeling of achievement. He was thrilled and felt a bit more lively and less clinical. The next plan for him was to step down to the HDU ward and start basic physio to make him stronger in the coming days. Though he was on the list for Stoke Mandeville NSIC as it was taking time, we requested OT to refer him to Northwick’s stroke rehab unit. But in the next 5 days, he was accepted in Stoke Mandeville for his further rehabilitation.

The rehabilitation journey!

In NSIC, he started his rehabilitation journey. At this stage, he was very weak, couldn't sit in the wheelchair for more than 1 hour, and tried the tilt table a couple of times. Even his lung capacity wasn't excellent as he was just off the trachea. He was given a physiotherapist and occupational therapist to plan his rehab. He started gaining self-confidence, engaging in rehab, and making plans to get the best results. As SCI is very complicated, low moods and anxiety are often common, and if not looked after can lead to serious mental health conditions. He was given a psychologist and talking buddy from the beginning to not have those conditions, his therapists were also lovely in making him feel normal.

He started sitting for 8-10 hours in his wheelchair, standing using a standing frame once a week, and hand cycling. We started to see his strength coming back in his right hand and upper body.

He loved going to the spinal gym for exercises, and his physio session with the assigned physiotherapist. He used to do hand bike, leg bike, FES bike, exercise bands, and standing frame. Using all these types of equipment helped him avoid muscle wastage and gain strength. These exercises gave him a mix of active and passive range of motion. He was offered hydrotherapy sessions, those sessions were targeted sessions to activate the movement which is usually difficult on the ground but easier due to buoyancy in water.

For fine motor and upper body improvements, occupational therapists designed activity-based sessions. Those sessions included fine grips for sorting pegs, moving items from one point to another, coloring, and gardening. An upper limb studio provided technology-based therapies for finger flexion and extension, VR-based games for shoulder stability, and EMS therapy for tricep movement.

There it was not just about rehab, he made some good friends and chatting groups. There was a charity-run Horatio's garden in the hospital, which was a perfect place for gardening, arts, and crafts, and other therapies along with meeting friends and families. They offer free hot drinks, cakes, biscuits, and a variety of fruits. Rohit loved that place for his sweet tooth(cakes) and gardening.

He likes playing sports too, he played boccia, table tennis, pool, and badminton with support. Wheelpower charity conducted hand cycle sessions in Guttman Center. Rohit got a chance to get into one of the sessions and did a hand cycle in the Paralympic track. As we moved closer to his discharge, we needed to make adaptations. There were numerous adaptations we did like changing the bathroom to a wet room, broadening the kitchen to make it more accessible, have permanent ramps. After being in different hospitals for over 10 months he wanted to return home as soon as possible. We then decided to make the dining room his temporary living setup so he would get discharged on the agreed date without any further delays.

Homecoming and to date!

On 6th Sep 2023, he was discharged from NSIC in his manual wheelchair. It was very emotional for all of us, our son was very happy to have him back home. That day we felt complete again but a lot of work had to be done for his next journey. As everyone says, being home isn't easy after a long hospital stay, he had pressure sores soon after. Being in bed again was very upsetting for him. He had multiple Autonomic Dysreflexia(AD) episodes due to his bladder issues. This had put him a few steps back in his rehab journey, not just physically but mentally as well.

Still, a physiotherapist is not sorted out for him but he manages some range of motion(ROM) exercises with his carers. I got him a basic motorized leg/hand bike, he loves it to bits, and it gives him something to do every day. We all keep motivating him to keep his health fine and keep doing what is required for muscles not to get wasted.

Our son has become an occupational therapist to him, he gives his baby toys to arrange or stack. Some puzzles to put on, his cars to be used to move daddy’s left arm back and forth. But Rohit still misses being on the floor with our son and making train tracks with him.

What’s next?

He loves spending time with our son and family, he craves being as much independent as he can be whether it's cooking, working, or even gardening. At the moment he is not only missing being independent but also his hobbies he can't do anymore like playing guitar, cooking, and going out with friends.

Along with Rohit, we as well are very determined for his recovery to get him back to the world where he feels confident and near normalcy. Having said that, everything comes with a price especially when dealing with a very high level of spinal cord injury, in his case C4 Asia C. That is the reason, I’m setting up this funding page so he can at least get the things that can be beneficial for his recovery. This funding will help in a multitude of things like home adaptations, physio, hydrotherapy sessions, wheelchair-accessible vehicles, specialized equipment, and for a second rehabilitation if possible to help Rohit get better and stronger.

He is very focused and motivated to be able to transfer himself using a slide board, try to do as much hydrotherapy as he can and strengthen his core muscles. He loves going on holidays and meeting friends and family, right now we are blessed to have our family and friends' support by visiting us.

We would like to thank all our family and friends for their extended support whether it's nursery pickups/drop-offs for our son, helping us with food, and chores, or being with us when needed. Rohit’s friends kept visiting him in the hospitals, ITUs and even after once he was back home. Even small achievements can have a bigger impact on hope in this tough time. With all the support so far, it has been possible for Rohit to breathe without a ventilator, feed himself, use his right arm, and work towards getting better day by day.

Thank you to all of you who are giving your valuable time to read this, and know about Rohit and his journey so far because of his spinal cord injury.