Two steps forward, one step back |
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It was great to get Will home. He had spent over three months in Auckland’s Starship Hospital and on the Children’s Ward in Wellington hospital. At least one member of our family had spent each one of these days with him. We were exhausted, thrilled and (to be honest) a little bit apprehensive.
This transition didn’t go well. Almost immediately Will became very distressed, irritable and was obviously in pain (neuropathic pain). He was vomiting often and frequent seizures continued. Our doctors could only suggest increasing his dose of morphine, steadily increasing it until he found comfort. While our doctors were explicit that this wasn’t about euthanasia, we believed that there was a tacit assumption that the risk of increasing morphine doses was perhaps, in the big picture, a good thing. At this time we were also introduced to palliative care professionals and even offered counselling through a hospice organisation.
It was obvious that people were not giving our beautiful boy much of a chance.
This transition didn’t go well. Almost immediately Will became very distressed, irritable and was obviously in pain (neuropathic pain). He was vomiting often and frequent seizures continued. Our doctors could only suggest increasing his dose of morphine, steadily increasing it until he found comfort. While our doctors were explicit that this wasn’t about euthanasia, we believed that there was a tacit assumption that the risk of increasing morphine doses was perhaps, in the big picture, a good thing. At this time we were also introduced to palliative care professionals and even offered counselling through a hospice organisation.
It was obvious that people were not giving our beautiful boy much of a chance.
Neuropathic pain |
Seizures |
Where our doctors had disappointed, our beautiful community nurse suggested a new drug – gabapentin. Our paediatrician, who is always willing to try new things, approved. The effect of the new drug was almost instantaneous, and Will was able to settle for much longer periods. Gabapentin can be effective in treating seizures as well as neuropathic pain. We were able to stop his morphine.
With Will, we are all very goal orientated. We had more or less achieved our first goal, that of making our poor little son comfortable, and could now turn our attention to his actual mental and physical rehabilitation.
We have become experts in drug regimens (my wife knows medications and doses by heart, I can only list the medicines themselves), coordinating healthcare visits and caregivers. We need to communicate and coordinate regularly with all of the following people and organizations:
With Will, we are all very goal orientated. We had more or less achieved our first goal, that of making our poor little son comfortable, and could now turn our attention to his actual mental and physical rehabilitation.
We have become experts in drug regimens (my wife knows medications and doses by heart, I can only list the medicines themselves), coordinating healthcare visits and caregivers. We need to communicate and coordinate regularly with all of the following people and organizations:
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We have some really good support in place, and not just from those listed above. Friends and family have been very supportive too. We have had two real pieces of luck without which things would likely have fallen totally apart. Firstly, Helen Henderson from Karahands came on board and she provides superb and safe respite care and facilitates his Conductive Education classes. She has been doing this for years, and is an invaluable sounding board. Secondly, Immigration New Zealand were exceptionally understanding and approved the permanent residency of Will’s grandmother. She has been the real hero in Will’s care and rehab – she is his most devoted carer and teacher and works tirelessly for him. She was here to help my wife through her pregnancy and birth, was there when William was born and three months later when he contracted meningitis. She looked after our daughter while we were in Starship and has spent many, many days and nights in hospital with him (both when he was transferred back to Wellington and with subsequent hospitalizations).
Sight and sound stimulation
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Building body and bone strength
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Sleeping on the job
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Enjoying real food
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People underestimate our son and their expectations can be very low.
Our son is making progress. It is slow and painstaking – and undoubtable – well worth the considerable resources, effort and love that are poured into our boy. With this help, care and support our son has managed to prove his medical team wrong again and again. We now take prognoses with a grain of salt.
We know that Will has some degree of hearing and vision and while it is surely very impaired, he is not quite confined to a world of total darkness and silence – the initial prognosis.
We can feed him! It still takes a lot of time each day and we have had to be very patient and persistent, watching and delighting in his painstaking improvement. We were able to remove his nasogastric tube and avoid the stomach plug. We have been told that William would never be able to eat his food manually, to chew and swallow food or drink from a spoon or a bottle. He can do this now, and it may seem like a very simple thing to many people, but his progress here has been joyous. Especially so, as we came so close to allowing ourselves to be convinced that he would need a gastrostomy, which is where food and liquid are fed directly into his stomach through a tube and a permanent hole.
At the same time as he was being booked in for his gastrostomy, he was scheduled for an operation where his stomach would be wrapped around his oesophagus. It sounds strange, but apparently when his stomach filled, it would tighten around the base of his oesophagus and prevent his frequent vomiting. We have been able to largely control his vomiting now (although periods of high seizure activity and illness see recurring bouts of this).
He is building neck strength and can control and support his head for small periods of time. At the moment, this is a key goal and we pay particular attention to strengthening exercises here.
He makes infrequent and unpredictable and very cute vocalisations that tug heart strings.
Just occasionally he will smile and even, in a few precious instances, he has been known to laugh (but so rare are these occasions that I have never seen or heard his laugh).
Our son is making progress. It is slow and painstaking – and undoubtable – well worth the considerable resources, effort and love that are poured into our boy. With this help, care and support our son has managed to prove his medical team wrong again and again. We now take prognoses with a grain of salt.
We know that Will has some degree of hearing and vision and while it is surely very impaired, he is not quite confined to a world of total darkness and silence – the initial prognosis.
We can feed him! It still takes a lot of time each day and we have had to be very patient and persistent, watching and delighting in his painstaking improvement. We were able to remove his nasogastric tube and avoid the stomach plug. We have been told that William would never be able to eat his food manually, to chew and swallow food or drink from a spoon or a bottle. He can do this now, and it may seem like a very simple thing to many people, but his progress here has been joyous. Especially so, as we came so close to allowing ourselves to be convinced that he would need a gastrostomy, which is where food and liquid are fed directly into his stomach through a tube and a permanent hole.
At the same time as he was being booked in for his gastrostomy, he was scheduled for an operation where his stomach would be wrapped around his oesophagus. It sounds strange, but apparently when his stomach filled, it would tighten around the base of his oesophagus and prevent his frequent vomiting. We have been able to largely control his vomiting now (although periods of high seizure activity and illness see recurring bouts of this).
He is building neck strength and can control and support his head for small periods of time. At the moment, this is a key goal and we pay particular attention to strengthening exercises here.
He makes infrequent and unpredictable and very cute vocalisations that tug heart strings.
Just occasionally he will smile and even, in a few precious instances, he has been known to laugh (but so rare are these occasions that I have never seen or heard his laugh).
Being put through his paces at Conductive education
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Will's favorite toy - Big Bird
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Seizures and contractions remain a huge problem. Will is wracked by frequent seizures. They come on suddenly and frighten our poor boy (as well as us). He is currently on two anti-seizure medications which bring a small degree of control. The big trouble with his anti-seizure medications is that we have to make a choice between how much control of his seizures we want and how alert and aware of his environment we want him to be. We can increase his seizure medications but this will leave him flat, tired and lifeless. We are terrified that his seizures, which the doctors are still describing as infantile spasms, will develop into full blown epilepsy. We would desperately love to get our boy seen by a world renowned specialist.
We wage a daily war against his muscles and tendons tightening, spending hours exercising and stretching him, unclenching tight fists and straightening contracted limbs. Most children like Will end up with very stiff posture, spine and limbs permanently contracted into misshapen form – we do our very best to prevent or, at the very least, delay this. Not being able to stand, there is no natural weight bearing forces to drive the normal developmental physiological changes that occur in healthy children. Will’s bones are in real danger of becoming weak and his legs are likely to be displaced from his hip sockets. We get our son up and in his standing frame as much as possible to prevent this, to build body and bone strength and develop muscle tone. A specialized sleep system keeps his body aligned as much as possible when he sleeps. Despite all this effort, our orthopaedic specialist has found that the beginning of a hip displacement. It’s likely that he will need a series of operations to straighten his body and align bones in the future, however, we are determined to delay and prevent this for as long as possible.
Physical touch, caresses, hugs, tapping games, helping him play with toys that make noise and light up, humming, singing and talking to him, and playing music are all things we do to try to help stimulate and engage his poor little brain. He is put through his paces three days a week at his remarkable Conductive Education group. Here a team of specialist educators put him through a series of exercises and train his brain to respond to the surrounding environment. They even take our boy swimming.
We wage a daily war against his muscles and tendons tightening, spending hours exercising and stretching him, unclenching tight fists and straightening contracted limbs. Most children like Will end up with very stiff posture, spine and limbs permanently contracted into misshapen form – we do our very best to prevent or, at the very least, delay this. Not being able to stand, there is no natural weight bearing forces to drive the normal developmental physiological changes that occur in healthy children. Will’s bones are in real danger of becoming weak and his legs are likely to be displaced from his hip sockets. We get our son up and in his standing frame as much as possible to prevent this, to build body and bone strength and develop muscle tone. A specialized sleep system keeps his body aligned as much as possible when he sleeps. Despite all this effort, our orthopaedic specialist has found that the beginning of a hip displacement. It’s likely that he will need a series of operations to straighten his body and align bones in the future, however, we are determined to delay and prevent this for as long as possible.
Physical touch, caresses, hugs, tapping games, helping him play with toys that make noise and light up, humming, singing and talking to him, and playing music are all things we do to try to help stimulate and engage his poor little brain. He is put through his paces three days a week at his remarkable Conductive Education group. Here a team of specialist educators put him through a series of exercises and train his brain to respond to the surrounding environment. They even take our boy swimming.
Another respiratory infection
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Pneumonia - in ICU on life support
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Stressed and worried parents
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Our boy is very prone to respiratory infections and we have been told that this is how, most likely, he will depart this world. Last year he was hospitalized on three different occasions for bad respiratory illnesses. We have had two more this year, of which the latest one was terrifying. Pneumonia led to him fast going downhill, needing life support in ICU and being placed on a ventilator. He fought it and won! He is such a fighter and we are so proud of him.
We always have the threat of respiratory infections hanging over our head. This stress is ever present for us – especially more so in the winter months, and compounded by the fact that our daughter is in kindergarten and being exposed to all of the coughs and colds a normal, healthy four year typically encounters.
To compound matters, during this last hospitalization his doctors made it clear to us that if he needs life support again, we won’t get it. Life support will be refused.
We always have the threat of respiratory infections hanging over our head. This stress is ever present for us – especially more so in the winter months, and compounded by the fact that our daughter is in kindergarten and being exposed to all of the coughs and colds a normal, healthy four year typically encounters.
To compound matters, during this last hospitalization his doctors made it clear to us that if he needs life support again, we won’t get it. Life support will be refused.
There have been lots and lots of questions and thoughts about the decision by our doctors at Wellington Hospital to not offer further life support to our son if it’s needed in the future. I would just like to clarify our position here.
The justifications of this decision are based largely on what we believe to be the very low expectations our doctors have for our son. Yes, he will always be dependent on others for support. He will always face huge challenges (as will we) in terms of his physical and cognitive development. But he has made lots of progress in one short year. He can chew and swallow his food by himself! This is huge. His hard work meant he escaped having a permanent feeding tube being inserted in his stomach. We were almost talked into being convinced that this would be a necessity. We asked for more time, got it, and taught him to eat. Massive progress.
Time has enabled us and all of those involved in his care to progress his development. He has built neck strength. We see and feel him respond to touch, settle in our arms when upset, respond to and track lights and noisy toys. Yes, his vision and hearing are very, very impaired but this is a cognitive impairment. As his brain is slowly trained to respond to his environment we hope that sight and sound will take on more meaning to him. We just need time.
It’s not just about a simple distrust of the care he has received. Obviously he was badly let down initially, but we have some brilliant and caring doctors involved in his care now. They know more than us, but they don’t know our son better than us. Will’s journey has just begun.
We understand the reasoning behind the do not resuscitate decision. Will is expected to leave this world through a bad respiratory infection. Each instance of pneumonia will see additional lung damage being done. Accumulated lung damage results in increased susceptibility to further chest infections. A vicious circle develops. Each time he needs breathing support it becomes increasingly unlikely that he will start breathing for himself again.
But dear god, Will has only had one bout of pneumonia since Wellington Hospital broke our son, only one instance of needing a ventilator in almost two years. It was provided. He started breathing for himself. He came home. We started working on his rehabilitation again, driving his physical, cognitive and spiritual development forward again. We believe that Wellington Hospital has an added duty of care here, they have responsibility for the damage that Will has been subjected to.
We do understand what we need to do if the situation arises where he won’t be able to breathe for himself again; if he can’t come off the ventilator by himself. However, it may be five years before he needs this level of intensive support again, and if he does, who is to say he won’t breathe for himself once again?
Before his last hospital admission we were worried enough about each cough and cold he caught, each cough and cold his family brought home. We are fully aware of the danger and we worry about it a lot (really, a LOT). But, the added stress of knowing that he is on his own if his airways close and he stops breathing is intolerable. We won't know if it is a temporary breathing issue or if it is now his time to leave us. I know I’m not imagining this, this is an unjustifiable burden that we are expected to bear, because we’re living with it now, tomorrow, next month, next year, the next five years from now. We don’t know when his next life threatening event will be, but without the ability to intervene that added stress is something we have to live with right now. It is an unfair expectation. We will be examining at all of our options in challenging this decision.
The justifications of this decision are based largely on what we believe to be the very low expectations our doctors have for our son. Yes, he will always be dependent on others for support. He will always face huge challenges (as will we) in terms of his physical and cognitive development. But he has made lots of progress in one short year. He can chew and swallow his food by himself! This is huge. His hard work meant he escaped having a permanent feeding tube being inserted in his stomach. We were almost talked into being convinced that this would be a necessity. We asked for more time, got it, and taught him to eat. Massive progress.
Time has enabled us and all of those involved in his care to progress his development. He has built neck strength. We see and feel him respond to touch, settle in our arms when upset, respond to and track lights and noisy toys. Yes, his vision and hearing are very, very impaired but this is a cognitive impairment. As his brain is slowly trained to respond to his environment we hope that sight and sound will take on more meaning to him. We just need time.
It’s not just about a simple distrust of the care he has received. Obviously he was badly let down initially, but we have some brilliant and caring doctors involved in his care now. They know more than us, but they don’t know our son better than us. Will’s journey has just begun.
We understand the reasoning behind the do not resuscitate decision. Will is expected to leave this world through a bad respiratory infection. Each instance of pneumonia will see additional lung damage being done. Accumulated lung damage results in increased susceptibility to further chest infections. A vicious circle develops. Each time he needs breathing support it becomes increasingly unlikely that he will start breathing for himself again.
But dear god, Will has only had one bout of pneumonia since Wellington Hospital broke our son, only one instance of needing a ventilator in almost two years. It was provided. He started breathing for himself. He came home. We started working on his rehabilitation again, driving his physical, cognitive and spiritual development forward again. We believe that Wellington Hospital has an added duty of care here, they have responsibility for the damage that Will has been subjected to.
We do understand what we need to do if the situation arises where he won’t be able to breathe for himself again; if he can’t come off the ventilator by himself. However, it may be five years before he needs this level of intensive support again, and if he does, who is to say he won’t breathe for himself once again?
Before his last hospital admission we were worried enough about each cough and cold he caught, each cough and cold his family brought home. We are fully aware of the danger and we worry about it a lot (really, a LOT). But, the added stress of knowing that he is on his own if his airways close and he stops breathing is intolerable. We won't know if it is a temporary breathing issue or if it is now his time to leave us. I know I’m not imagining this, this is an unjustifiable burden that we are expected to bear, because we’re living with it now, tomorrow, next month, next year, the next five years from now. We don’t know when his next life threatening event will be, but without the ability to intervene that added stress is something we have to live with right now. It is an unfair expectation. We will be examining at all of our options in challenging this decision.
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