Wednesday, 24 August 2011

One step forward, two steps back ...

Adam is currently in Epsom Hospital with a suspected bout of (mild) pneumonia.

His cough has shown little improvement since Monday despite being on oral antibiotics, though neither has it become noticebly worse. Yesterday seemed to be his best day since returning from Germany; both in terms of staying awake and being alert, and in terms of improvement in his appetite and eating habits. We thought we were on an upward path ...

Then he spent the latter half of last night complaining of 'a bad tummy ache' which kept him awake on and off until morning. For Alison particularly it brought back painful memories of two years ago before Adam was diagnosed. We took turns attending to him and rubbing his tummy until he settled down; no sooner had we'd stopped than he would become disturbed again, often by the coughing, and he would complain once more. For some odd reason he has been very insistent that his tummy doesn't hurt, and he's not in pain, it's an ache. Our first hope was that it was nothing more than him needing the toilet. However, that was dashed in the early hours when he returned from a successful trip to the bathroom to annouce "well that hasn't made the slightest bit of difference".

This morning when he woke up he was still complaining. And then he was sick twice, an hour apart. I called the Marsden and told them I wanted to bring him in to be looked at; given the combination of things that were going on, and the fact we had recently returned from antibody therapy in Germany I was keen to go to the Marsden rather than our local. It was agreed we would take him after lunch, and with that we gave Adam a codiene for pain relief. For the next four or five hours he was a different child again. He ate breakfast, had homemade pizza for lunch, and was generally in good spirits. However, just as I was ready to take him to hospital the pain returned again. At the Marsden they took bloods to check pancreatic enzymes, examined him and listened to his chest, and sent us off for a chest x-ray. Surprisingly Adam was completely uncooperative when it came to having the x-ray done. All he had to do was sit still on a stool for two minutes, breathe in and hold his breath. But, by god, did he kick up a fuss. Clearly he wasn't feeling great, and he had been asleep before I'd taken him down, but still I can't remember him ever being that difficult and upset before.

The x-ray and bloods came back normal, the physical examination found nothing obviously untoward, blood pressure was normal (for Adam), heart-rate and oxygen saturation was fine. However both doctors who listened to Adam's chest heard noises at the bottom of his right lung that would indicate an infection (as had the doctor on Monday). The stomach pain would also be consistent with worsening pneumonia in this area. The sickness was most likely a result of the sputum that Adam has been coughing up, and swallowing. It was therefore decided the best course of action would be to admit Adam for 48 hours of IV antibiotics to try and get on top of things. If there was sufficient improvement during such time he could then be discharged to complete the course of oral antibiotics at home.

We are hoping that this diagnosis is correct and there isn't a more sinister reason for any of Adam's new symptoms. It's impossible for us to ignore and disregard such a possibility completely, we've been through too much already for that. What we need is for Adam to get through the next 48 hours and show some real improvement so (1) we can have our minds put to rest, and (2) we can get him home again to start work on building him up ready for the second cycle of antibody therapy. As things stand we are still scheduled to travel out to Germany again on 3rd Sept, and start treatment on the 5th.

At least there was a silver-lining to today as far as Adam was concerned. This morning after he'd been sick we explained to him what the plan was; we'd take him to the Marsden for the doctor to look at, and if they decided he needed to spend a few days in hospital then (providing they had a cubicle free) he'd have to go up to Epsom to sleep. Adam's response? "I want to go to Epsom, I haven't been there for ages. I miss Epsom". He's right about one thing, he hasn't been there for ages. His last visit was for blood products sometime in March, and tonight ladies and gentleman will be the first night he has slept at Epsom Hospital in the whole of 2011. I can't say first and last because that's patently not going to happen, but if he's back home by the weekend I'll be (very) happy with that.

1 comment:

  1. I'll second that. Thinking of you all and very grateful for the updates. xxx