Thursday, 11 August 2011

Greifswald (Cycle I, Episode V)

Adam continues to mostly sleep his morphine induced sleep. He has had more extended periods of wakefulness over the past 24 hours, but still he mostly sleeps. On a positive note he has woken every morning so far and eaten a good breakfast of porridge, banana, and grapes. Made by us, of course; I was asked, and tried to explain, about porridge during a conversation with one of the staff here. Failing dismally, I gave up.

Lunch and tea are not so successful, but he at least eats a small portion of something. It’s an improvement on some children who refuse to eat completely through antibody therapy. Another plus is the fact that he had a poo on both Tuesday and Wednesday. Moving ones bowels is seen as very important, because the morphine in many cases results in constipation. The doctors here don’t like constipation, they are very quick to get the enema kit out if your child hasn’t been for three or four days. We were advised by parents who have gone before us to institute an enema avoidance strategy from day one, so we’ve been quite pleased that he’s managed to ‘go’ of his own accord whilst we’ve been in here.

This morning whilst I was at the elternhaus (parent’s house) the doctors came to take Adam for an ultrasound. He wasn’t very cooperative about moving from his bed, and in the end they brought a wheelchair to transport him in. It was only then that Alison enquired how far they had to go, the answer being ‘next door’. So Adam was wheeled all the way from his room to the adjacent treatment room, but it kept him happy (well relatively). The resultant ultrasound showed that Adam has an accumulation of fluid around his lungs, enlarged lymph nodes in his groin, and a swollen gall bladder. None of which you will be pleased to hear are either particularly remarkable or a cause for major alarm. Unpleasant yes, but unexpected no.

Adam’s blood pressure continues to be low, which is a cause for on-going concern, and thus in need of regular monitoring. Earlier today one of our nurses lowered his morphine rate from 2ml/h to 1.5ml/h (I didn’t even ask!). He remained pain-free for the remainder of the day, and this evening the doctor lowered it still further to 1ml/h. Reduction needs to be gradual to avoid symptoms of withdrawal, and indeed minimize the chance of breakthrough pain. The hydration rate has also been increased by 50% to try and help improve Adam’s blood pressure, but this of course comes at the cost of increased fluid retention. Everything is a balancing act.

All told we can have no complaints so far about the way Adam is being looked after. The doctors are clear and very approachable, and the longer the week has gone on the more we have warmed to the nurses. A few awkward moments when a parent who speaks no German tries to communicate with a nurse who speaks no English, but nothing major. They have almost universally come across as friendly, helpful, caring, and competent. There’s not much more that one can ask for really – those that can speak (or at least understand) a little English are an added bonus!

So we carry on one day at a time; in that way we hope it will not be too much longer before we are able to take Adam back home again, at least for a short while until it’s time to return for the second cycle.

I know that I write almost exclusively about Adam on this site, as opposed to general family stuff, that has been entirely deliberate on my part – it is ‘Adam’s Appeal’ after all. However, the singularly most difficult thing we have experienced thus far has been having to be away from Jake and Jessica. In a different country, separated by a distance of over seven hundred miles. We know they are being well looked after, that’s not an issue. But they are our children too, and we miss them. Skype may be godsend in these circumstances, but it can never be a substitute for all being together as a family under the same roof. By the time we return we will have been away for seventeen days at least. I am so proud of the way all of my children, not just Adam, have dealt with what life has thrown at them over the past two years. I’m not yet sure how we are going to manage the next four cycles but we will have to think about it very carefully in the context of Jake and Jessica, and not just Adam.

P.S. For anybody who hasn’t already noticed, I’ve also been keeping a bit of a photo blog of our time in Greifswald. You can find it at if you are interested.

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