LGI was totally inappropriate and unethical. Waking Harry and taking him to hospital would have caused immense distress to him and thus us, for starters, but what also needed to be considered was getting the appropriate equipment in for Harry. Harry needs a special air mattress to sleep on, he needs a wheelie commode to access the toilet and he needs space! The side bedrooms on ward 31 are not set up for wheelchair users. Harry would have been isolated due to having an infection and so he would have needed his own room. Meeting Harry's needs adequately would have taken planning and would not have been achieved on an immediate admission in the night!
We have also been there done that with respect to going to hospital on a night time and the reality is that when the on call team take over for the night, it takes hours to be seen and assessed, meaning a disrupted night for all. This is hardly the order of the day and ethical management of a little boy who is dying. Despite being told that it would be a shame not to get on top of Harry's infection that could threaten his life, I stuck to my guns! Harry is not as he was at Christmas, beating an infection just isn't going to get him back to where he was and anyhow, he has had temperatures since 5 th February and it is only last week that blood cultures were taken and hence the infection identified. In usual medical style, diagnose and then treat. The reality is, that keeping Harry comfortable, in familiar surroundings, with his family and friends and the love we provide is what counts now. Not the distress of a hospital environment where they would prod and poke him umpteen times a day to check his temperature and blood pressure. I thought they could take me to court if they so wished!
Anyhow, the team that was on the next day, fortunately thought keeping Harry at home, was more ethical! Instead of having IV antibiotics he has had a 7 day course of oral antibiotics and he has had antibiotics put through his port into the plastic line that connects his port to his vein. This is where they think the bacteria is. They call it 'locking the line'. Harry had a line infection in September 2012, which resulted in him having his port surgical removed and a new one being surgical inserted a week later. Obviously this is not going to happen now. In fact his port is redundant, due to the bacteria now. If it is used, it is feared that the bacteria will fe pushed into his blood stream causing septicemia.
Harry has not had a blood transfusion. The thought from the medics is, that the last one provided minimal improvement to Harry's quality of life and do giving another will probable be if no benefit. He would also need to have the transfusion done via a cannula and thus a trip to lgi would be needed.
Harry perked up on Saturday just gone and managed a trip to a small local farm. My sister, niece and brother in law were up and so they were able to enjoy his company. Although, having had a good day Saturday and we thus have hope of a few more, Sunday was a very different situation for Harry. He was very quiet, lethargic and in pain. Following discussions with the on call McMillan nurse I increased his pain relief patches. The rate went up to 140 micrograms, it was only 70 just over a week ago, this was the second increase in a week. I thought Harry would have been spaced out and asleep mist of Monday, due to the increase, but he wasn't. The pain continued and I topped him up with oral pain relief medication.
On Tuesday we had a joint visit from a doctor from Martin House, our McMillan nurse and the community nurse. We had a very frank discussion with the team re, Harry's pain management and where he is at. Harry has not been eating for the last few weeks and so he has become very frail. Due to malnourishment his pressure sores are getting worse. The team predict that Harry is very much on the decline and in their view, unlikely to be here in 2 weeks. We had a frank discussion about managing 'the end'. Our current plan is for Harry to die at home, then transfer to Martin House, where Harry can lie in a refrigerated bedroom until the funeral. A quiet place where goodbyes can be said without the time constraints that a funeral parlour may have. A familiar environment in which Callum can say goodbye to his brother and also really understand the infiniteness of death, so he knows that Harry is not coming back.
Having had these frank discussions, Harry actually had a better day on Wednesday. Having increased his oral pain relief medication and having got on top of his fevers with the antibiotic, he was comfortable and able to participate with decorating his army barracks, the latest project. He did have pain in his kneck when he turned his head, but it was a much better day than the previous 3. As a result, we had hoped for a few more good days and I began to wonder if he may last longer than the medics predict. It was only last June that they predicted that he would not make the summer. The optimist in me felt that we could perhaps get out again for a little trip. Having a good day with Harry lifts all our spirits and suddenly anything seems possible. I also got a proof read of Harry's story book, fresh from the printers! When Harry is comfortable, we feel able to cope and think of the future. when he is in pain, we feel helpless, our hearts so very heavy with sorrow and sadness. Watching your 6 year old son go through the suffering that he is, makes us wish that he can be taken from us sooner rather than later. Not that we don't want to kiss him, or hold his hand one more time, but to end his pain. Having a good day, makes anything feel possible.
Alas, today (Thursday) has not been a good day. Harry has been in immense pain and very quiet. He vomited back his medication at lunch time. I thus contact the on call McMillan nurse to set up a syringe drive for Harry, whereby his pain relief medicines and anti sickness medicines can be infused into him over a 24 hour period. The syringe gets changed by nurses every 24 hours. With much persuasion Harry agreed to having this set up. It involves a tiny needle being inserted into him, which stays there now. He was frightened of the needle, but eventually let the procedure take place. Moving onto this system means Harry only takes a minimal amount of oral medicine and at least, if he is sick, the pain relief that he needs will be there to ease things and make him more comfortable.
Thus our roller coaster continues.
Someone asked me the other day if I was prepared or ready for Harry to go. I answered that we will never be ready. I am sure some people in a few months will wonder why our grief may be just as intense as the day he died, considering we have had months to anticipate his death.
My answer is that we frequently grieve in anticipation of our pending loss, but as said previously we parallel plan. Just as we grieve, we have planned for the future that includes Harry. Our future of late has revolved around a much smaller world, but even making army forts at home, means there are activities to undertake as a team, even if Harry has little strength to actually do the painting or sticking, he at least directs and has very firm ideas about his creations! When Harry dies, the future will look very different, Harry will live on in our hearts and his book will be a legacy to him, but actually holding his hand and physically doing things will be no more.
It it the loss of the physical contact that I think no one can actually be prepared for. We all frequently say to each other that we love one another to the stars and back and round the world a billion times and back again. Not actually hearing those words anymore will be what we miss, every minute of every day.
I do hope the syringe driver can make Harry more comfortable and tomorrow we can continue with his creations, there is more to do yet!