The road to recovery: what's been happening in Sydney

Hello family and friends,

My apologies that it’s been over a month since I last wrote and updated you on how Dad’s progressing.

Things have been very busy – as well as a little up and down – as we’ve settled back home here in Sydney. Obviously our lives have changed.

We’ve spent two or three weeks packing up Dad’s things at home and organising all that needs to be done while he is in hospital for the next few months. My brother and I are now in a routine with hospital visits: we work together to have nights off and we’re convinced that being back at work is a positive.  Again we thank everyone at Blackmores and Sunrice for being so supportive.

Life at Prince of Wales Hospital

During our first few days back in Sydney, the medical team’s attention was not solely focused on Dad’s spinal injury, but also on the infection in his chest and his risk of developing pneumonia. He was put on antibiotics and had constant physiotherapy to review the infection and assist him with coughing up mucus created by the infection. His oxygen levels fluctuated during this period, so the one-on-one, 24-hour nursing care he received was of great comfort to us all. After a few days the infection cleared. The antibiotics were working. 

Eating and feeding

Dad has been on a nasogastric feeding tube (NG tube) since the accident happened. The medical team in Sydney performed a swallow test – there was a concern with Dad’s gag reflex and the potential damage caused by the accident, or by a previous medical treatment.

The ultimate aim was to get him eating solids as soon as possible. We needed him to exercise the muscles necessary to eat and swallow solid food.

Moving to the spinal unit

When he was no longer deemed an ICU patient, Dad awaited a bed in the spinal unit. A bed became free and he was transferred out of one-on-one care. We noticed a change in his mood.  He was happier being around people rather than being isolated in a solitary room.

The focus was now on writing up and beginning a rehabilitation program, including physiotherapy, occupational therapy, psychology, pathology and dietetics. His ‘support’ team also comprised spinal consultants, neurologists and senior nurses - quite overwhelming, but a team this size is necessary in order to review all aspects of a spinal injury and to help work towards reaching the best quality of life for Dad (within his limits).

It has been a tough few weeks for us all, especially for Dad who has to work harder than ever, physically and mentally.

No matter how slow this rehabilitation process is or how long the road ahead of us is, we now seem to be moving in the right direction – forward!

The initial concern about his chest infection was managed well, and a couple of weeks ago he came off the antibiotics.

Small wins

The team were happy enough with the spinal fusion surgery done in Bangkok, and after reviewing post-surgical scans, they allowed Dad to take off his support collar.

Dad has overcome concerns about his oesophagus, and for the last couple of weeks, he’s been eating solids. Just a few spoonfuls to begin with! But now he is eating good portions of each meal (although it's all puréed). Dad is still being fed by the NG tube but they are looking to ween him of the nutritional supplement as he eats more and more over the next few weeks.

During the last three weeks, they have moulded him forearm and foot casts and also begun work on his electric wheelchair.

Erratic blood pressure is an issue for Dad. It stops him from getting out of his bed and into the wheelchair. But this is now being managed and Dad is able to sit in it for up to one hour a day. However he still doesn’t have his learner’s licence for the three-speed front wheel drive!

The family have a meeting with Dad’s team every three weeks or so (our last one was over the weekend). During these sessions we review his short term/long term goals, which keeps us focused on the future. No matter how small the above goals may seem, they have each been a positive for us. They stop us from looking back.

I hope to keep updating you all over the next few months.

Thank you again to everyone and best wishes to all of you.

Love from Tan.

Homebound

Post-operation in Thailand

Monday, 12 March: after the Thai doctor Dr Yot saw my father, he said the words we wanted to hear. Finally he agreed that Dad was fit to fly home on a Thai Airways plane.

Dr Yot also mentioned two other things: firstly, Dad was recovering well from his operation (seeing the x-ray of Dad's neck was an amazing sight. He now has titanium metal and bolts inside his neck, along with wire mesh… I am in awe of the medical technologies available these days!).

Secondly, Dad still has a lot of secretion build-up in his chest – this is very common for bed-ridden patients and, worryingly, it can lead to infection and pneumonia.

That night was one of the longest of our lives. Dad had a fever. His temperature fluctuated between 37.7 and 39.8 °C. Usually Tauseef and I took shifts to watch over Dad as he finds it difficult to sleep. But that night we were both so worried: the two of us shared the watch. 

(Dad was given Tylenol for the fever which lasted through the night. He’s still taking this today.)

Another sleepless night followed. We tried to get Dad's temperature down with a wet cloth. Again, secretion build-up occurred in his chest. Unfortunately the nurses were not able to extract this using suction, whereby they place a long sterile tube through either the nose or the mouth down the windpipe to suck out/extract the secretion (mucus). Obviously this build-up makes the act of breathing really uncomfortable.

Dad was placed on various antibiotics and medicines to help cough up the secretion and kill the infection. He was seen by Respiratory, Internal Medicines and Infectious Diseases doctors. All took daily X-rays and samples for laboratory work. In the meantime, they needed constantly extract the extra secretion. Dad hated this. It pained me to see him go through the procedure – I was convinced that not all of the nurses were experienced enough to perform this without further adding to his discomfort.

(Although most were great, some of the nurses at Bumrungrad Hospital could have been a little more helpful and experienced. I write this because there is still a fair contrast between our nurses here at home and the nurses who cared for Dad overseas.)

Getting Dad out

The next few days were crucial. We needed him to be well enough to fly. The doctors changed his antibiotics, a decision that proved to work. We were told that his ‘fit to fly’ form was now approved, but that we could not leave until the weekend. Initially I was informed that we could be on our way on Thursday or Friday of last week, but the hospital was looking at Saturday or Sunday. We pushed to be able allowed to go as early as possible.

Once we had confirmed flights, we organised for my brother to fly out the day beforehand to make sure everything was good with the ambulance service and Prince of Wales Hospital back in Sydney, where Dad would be received immediately. We wished we could have all landed together, but this was not to be.

With long days and even longer nights still routine, I was concerned about looking after Dad alone through the night. All this time my brother, my dad and myself have been working through this; and now I was counting down the hours until morning without my brother beside me.

Visit from Christine

Last Thursday not only marked our last day in Bangkok, it was also the day that a familiar face came to visit, that of Blackmores’ CEO, Christine Holgate. Her visit was one of support and it provided a connection to all my friends and colleagues — not only back home, but also within the company’s international offices. We are truly are a Blackmores family: the support my brother and I have received from not only from friends, family and new friends – but from our employers, Blackmores and Sunrice — has been amazing and wonderful.

This has included everything from allowing us to have the time off, to communication with senior management, to company fundraising and donations. My brother and I thank you all so much.

Final hurdles in Thailand

There was one last twist. Four hours before leaving, my dad had a chest x-ray and, once again (!!) we were told, “Your father’s not fit to fly.” I went into a tailspin. I was so confused and felt unsure if we would EVER get home. Dad’s chest was still a concern, so this x-ray was not taken lightly.

Less than an hour later, we crossed paths with the transport doctors. They were adamant that we were leaving at 5pm. Dad would be transferred to Prince of Wales, and that was that. All I could do was hug the bearer of this news, Dr Sommart.

In the air

The flight was not all that smooth. My father was cold and not breathing comfortably: he required constant oxygen and, again, secretion extraction was performed four to five times. I spent the first two hours by his side, but eventually I was so exhausted that I fell asleep and did not wake up again until we landed.

Touchdown in Sydney

Dad was okay. He made it. We made it. I was given an express pass for customs and my father was straight away taken to Prince of Wales via an ambulance that met him on the tarmac.

I bid farewell to Dr Sommart and Nurse Pom, and was picked up by my brother at the arrivals gate.

We hurriedly rushed to the hospital where my father was admitted to Emergency and then to the ICU. The difference in health services here and in Asia is quite incredible (and I now believe even more strongly in the value of properly funding our health system).

Finally! We are home!

The ICU will keep Dad under observation for a few days to run through all the hospital procedures, scans and tests. He currently has one-to-one care and over the weekend, we’ll get a better idea of what treatment is needed for his chest.

It's so good to be home!!

Love Tan.

Last days in Dhaka & The Bangkok Chapter

Goodbye, Dhaka

Well, last Monday, 5 March, we were very excited to be getting out of Apollo Hospital, Dhaka, Bangladesh, and arrive one step closer to home.

As you all may know, Indian neurosurgeon and physician Dr Chandy took the passive approach in treating my father in Dhaka. Not electing to perform urgent decompression surgery due to my father’s respiratory system, he used medicine to relieve inflammation around the spinal cord’s affected area.  

With further time in the hospital and not much improvement in my dad’s condition, Dr Chandy added insult to injury with terrible bedside manners, lack of communication and minimal cooperation with overseas doctors. He finally informed us that he could no longer do anything for my father by way of physio and treatment, and that in his opinion dad should be moved to CRP, a rehabilitation centre. Critical time had been wasted.

Fundraising

In the meantime, we were collating quotes for an air ambulance and for commercial airline flights with a medical team. We not only needed well wishes and prayers for our father, but financial support.

With the help of our friends back home, a donation site and Facebook page, fundraising was started through our networks and workplaces — Blackmores and Sunrice — calling on the goodness of our family, friends, colleagues and people we’ve never met! We were overwhelmed with the response.

Reaching Bangkok

We finally had decided on a plan (which must be ‘Plan G’ by now because every other plan was met with either a hurdle or a wall): to travel by air ambulance to Bangkok, reassess our father, and then hope to be on the first commercial airline home, accompanied by a medical team.

This was scheduled for Monday afternoon. The discharge seemed like the easiest thing we had done the whole time we were in Dhaka, probably because I started the process several hours earlier.

The Medical Wings team was very professional. It used full spinal cord precautions, something we did not see at Apollo at all. The concern was dad's respiratory system mid-flight — but he was strong and stable and the only hiccup was when required oxygen halfway through the 2.5-hour journey. The medical team was fantastic, and ground transport to Bumrungrad Hospital in Bangkok was also successful. We had arrived late last Monday night.

And another twist…

Dad had x-rays straight away and the next morning we met with ward surgeon Dr Sukitti and neurosurgeon Dr Yot. We had initially thought that dad would be okay to fly from Bangkok to Sydney shortly afterwards, but that was not to be. The news from the neuorosurgeon was devastating.

He said that our father’s spine was too unstable to allow him to fly; flying would risk of further damage that could ruin any chance of dad walking again, and, in a worst case scenario, damage that could halt his breathing altogether.

This ruined Plan G. We could no longer get dad home as soon a possible. Taking into account the many risks associated, finally dad decided to have the surgery here in Bangkok.

The operation

The surgery was scheduled for last Friday. It was a stressful time for me as I had to organise full payment in advance, otherwise the hospital warned that the operation would be postponed (I do wonder sometimes about hospitals and their good faith!).

Friday the 9th of March was also my brother’s birthday. What a terrible way to spend a birthday. Due to the risks, he was initially devastated that the operation was going to take place then, but eventually we could only see this as a good omen.

26 years ago to the day, I was in a waiting room with my father anticipating Tauseef’s arrival. Now I was waiting for our father to exit the OT with my brother by my side. A successful operation would be the greatest present!

With many prayers and well wishes from family and friends on our side, the four-hour operation was successful.

Dad had an Anterior Corpectomy of the C5 Vertebra (with fusion). They removed the C5 and calcification build-up to relieve the pressure around the spinal cord. They then stabilised the spine with titanium mesh, plates, bolts and calcium. Dr Yot was happy but Dad was in ICU to for two days and released last night.

The doctors will assess my father today and we hope to have him home within a week. He has a lot of secretion build-up in his lungs that needs to be cleared before travel. It is usually a week post-operation before any travel is possible, but Dad is working hard with the physio to get himself better and make it on that plane.

Thank you again everyone for all your support — family, friends (Blackmores and Sunrice) and new friends.

Tan.

P.S Hugs are welcomed when we get home!!!

Surgery in Bangkok

Hi all, on Friday night, 9 March (Tauseef's birthday) Mr Mannan underwent surgery in Bangkok. We'll update you shortly with the results. 

Front page of the Parra Advertiser from last week

Tan is a just a SLIGHT Parra fan, in case you didn't know. He might approve of being placed so close to Hindy, the only consolation for missing the first few matches of the 2012 NRL season.

Update from Tauseef — on our way to Thailand

The last 20 days have been the most challenging of our lives, but I am writing this entry with hope, as today my father will be med-evac’ed to Bangkok within the next couple of hours.

The best analogy I can use to describe our mental state is that of a bowling pin. Every time we seem to be making progress we are knocked down, only to pick each other up again to try to explore another avenue to get our father home. 

It has been an extremely draining journey to get to this point. Although there have been many lows during the last three weeks, I have come out of this experience with a restored faith in mankind. Without the support of our friends and family I’m sure we would not have been able to accomplish all that we have so far, but it has been the good faith and kindness of strangers that has really made the difference.

Arriving in Dhaka

Upon arrival and once we digested the magnitude of our father’s injuries, our priority was to get him home ASAP. Bangladesh has developed vastly from my childhood memories, but in all honesty there is no comparison between the medical treatment available here to that available in Australia.

My father is of the same opinion. In a conversation I had we him before he left he said that he had no intention of moving back to the subcontinent — primarily because his sons are both in Australia, but also because he has no faith in the medical treatment available here. The main purpose of his journey was to commence wrapping things up, so he didn’t have a need to return. The irony of this is has been very difficult to digest.

If I could use two words to describe my father it would be stubborn and determined. Since retiring five years ago, he’d spend on average three months a year in Bangladesh. So when I suggested travel insurance last year it wasn’t something that he thought he required. 

If you’re going away, please buy travel insurance!

On our second day in the country we were given the contact details of a young Australian, Victoria, who is in Bangladesh on a humanitarian mission. She’s an occupational therapist who works with people who have spinal injuries. Luckily she had a few days off and was coming into Dhaka. She easily spent 60 hours with us the first week alone running around, talking to doctors and helping us get dad home. My brother and I have been so humbled by her efforts and will never forget all that she has done for us. I’m not a religious person, but I believe that her being in the right place at the right time was nothing short of a miracle.

My father was in an ICU ward. We could only see him for 15 minutes a day. But we were meant to find solace in the fact that he was supposedly under the care of the best neurologist in the subcontinent Dr Chanday. But he has not made getting dad home easy for us. It is my personal opinion that us wanting to take our father back to Australia hurt his ego. I’m not in a position to judge the medical treatment they have provided dad, but certainly this doctor’s bedside manner has been terrible.

Victoria was able to get in touch with a contact of hers at the Prince of Wales Hospital in Sydney, Dr Lee. He too has worked tirelessly, spending several hours assessing all of dad’s scan, results and tests and ultimately trying to get him home and under his care.  On many occasions he has tried to contact Dr Chanday, but this has failed due to the fact that Chanday is an egomaniac and refuses foreign assistance.  @!!#$% #%$T^$ ^%#$^$$#%

We were told originally by the Australian Consulate that the med-evacuation would cost roughly $100K, so we started preparing. The next day the official quote came in. It was going to cost $273K, to be paid upfront, which is out of our means seeing we’re overseas and every minute counts. We were built up only to be crushed again!

Dr Lee then contacted many of his colleagues around the world. He also asked an Australian not-for-profit organisation, CareFlight, for a quote. This came back at $203K which was still out of our reach, but it later put together a package for $100K: this involved sending their doctors and equipment to travel with dad, purchasing eight seats on a commercial airline. So we got the ball rolling to make that happen and accept the latter quote. We sent them all of dad’s reports, scans and a detailed case summary.

The medical maze

We were put in touch with Dr Walker who would be travelling with dad. In 10 minutes we learnt more from him regarding dad’s situation and what he’d be up against than we did from Chanday in a week. Once again Dr Walker tried tirelessly to get in touch with Chanday, but had no luck. All was ready to go, all we needed was Chanday to fill up a form from Singapore Airlines regarding dad’s condition and the doctors would be on their way, but he refused. Once again built up only to be crushed!

After this, for the first time in almost two weeks Dr Chanday decided to speak to my father. He told him about the magnitude about his injuries and his potential outlook. I went into see my father not long after that conversation and it was the most difficult 15 minutes of my life. The accident did not injure his brain, his ability to communicate or his stubbornness and determination, but I’m 100% certain that that conversation changed him forever.

At this point an article was written about dad and our situation. An organisation called Medical Wings read the story and contacted the Australian Consulate offering to provide its services at 0% profit — but even so, the quote exceeded our means. Medical Wings then reduced its costs by a further $20K, but the amount was still difficult for us to arrange here and time was running out.

Thailand and what’s next

Although Dr Walker could no longer help us in terms of the evacuation, he has been in constant contact and provided us with the details of an Australian Doctor, Dr Morley, in Bangkok who heads a team of neuro/spinal surgeons in world class hospital in Bangkok.

Karen, a staff member at Australian Consulate, also provided us with the details of Dr Morley, who with the help of Dr Unuk in Bangkok helped get to the point where we are today.

The progress we have made towards getting dad home has come mainly from the help of others, people who we have never met, but are helping us out of the goodness of their heart. This whole experience has humbled me and made me want to become a better person so that one day when needed, I am able to help others in need as we have been helped.

It is a long journey home, and a longer journey for my father still, but I am certain that his stubbornness and determination will get him through this.

With lots of love,

Tauseef and Tan.

Thank you, SunRice!

So touched to report that we received a super generous $4,000 donation from Tauseef's employer, SunRice. Can't thank you enough...