Up, Down, Cry, Smile ...

It may have been a thoroughly shit nine days since we took Adam into Epsom Hospital but I can honestly say the level of care he's received has been exceptional. We've been fortunate that the consultants in charge, both last week and this, have looked at Adam, his long history, where things are at now disease-wise, the evolving situation, what we are trying to do in terms of getting him back to America, and have taken a very pragmatic approach to how he's been treated, both as a patient and as a person. We've been made to feel that Adam's care has been individual, and not simply prescriptive. The junior doctors, nurses, and community care team have all been great.

Today has typified these past days, one step forward, two steps back, glimmer of hope, silver lining, could go either way, and when all's done most probably we'll end up back at square one.

We're pinning the stomach pains on the combination of a very good eating day on Friday and the oramorph that Alison and I thought would be a good idea for him to have to help him remain comfortable whilst he was at home. Nice one Mum and Dad, that worked well didn't it?

"Remember that conversation we had about the doctor saying he thought there was still more poo up there?" said Adam after his second sit-down visit of the day "Well I don't think there's any more up there now."

The consultant thought Adam looked brighter this morning when he examined him during ward round. Indeed Adam was more chirpy than he has been for several days; we sat playing some random archery game on his iPad, each trying to better the highest score, and generally joking around.

The doc talked through the plan; that evening would be 48 hours since Adam had last registered a temperature above 38°. Provided he didn't spike again he thought it would be reasonable to discharge Adam to continue to be monitored at home. I asked him two questions; the optimistic one - "assuming Adam did not have another fever how soon could we look to get him on a plane?" "He would be certified fit to fly and realistically you could look to fly Thursday." And the pessimistic one - "supposing Adam does get another high temperature what then?" "I think we have no option but to treat for fungal sepsis, start ambisome and instigate the additional investigations."

Adam slept without his port accessed last night as it'd been in for over a week and needed to be replaced; a small victory for the little chap. As a consequence his bloods weren't taken until late morning. It doesn't happen often, but his newly inserted port started making horrible clicking noises whenever Adam moved. He hates that, and in truth it is a bit freaky. To the point where we did say we would have it removed, put some more emla on and get a different one put in. Not that we needed to, as it turned out.

A while later the nurse returned to say she needed to take more blood as Adam's haemoglobin had come back as 19.1. Yesterday it was (supposedly) 8.8. There was no way, thinking logically, that the pale little boy lying in the hospital bed opposite me had a normal Hb let alone 19.1, but these anomalies never fail to get the mind going in all sorts of directions.

After antibiotics we gathered Adam's things together ready to go home, and Alison got some fresh clothes for him to put on. The nurse came to do a final set of observations before we left. Temperature 38.1°. F&*@. F&*@. F&*@. F&*@. They notified the doctor and we waited for official confirmation of next steps.

We explained to Adam that this meant he couldn't go home. He sobbed. He even said, and I cannot remember the last time he said anything like this, "why is this happening to me?" Deep breaths. He then slept for a good hour-and-a-half. He hasn't done that since the middle of last week. After waking he suddenly exclaimed "My port is bleeding!" He was later to tell us "I told you it wasn't in properly." There was nothing else for it but to remove the port and clean up the bloody mess that was left behind.

When the consultant arrived he sat down and announced they had a new plan. An imperfect plan, but all things considered, it was the best they could come up with. Adam's CRP is the same, massively elevated but with no baseline as we hadn't measured it before Adam first became febrile. Effectively, what is attributable to the neuroblastoma? We simply don't know. The opinion of the microbiologist was that if there was a fungal infection he would have seen something in the seven days worth of blood cultures that were sat in his lab being encouraged to grow. As it was absolutely nothing had shown up and that made him almost certain this wasn't a case of fungal sepsis. Moreover, if it were, the antibiotics would have had no effect whatsoever, it would not have improved on its own, and most likely would now be worse having been left untreated for over a week. It didn't fit.

Having dropped two of the antibiotics at the weekend Adam has had a couple of higher temperatures, but no big spike of the extent when he was first admitted. So the new plan was (and is) to stop the remaining antibiotic and monitor Adam for the next 48 hours. If he spikes a higher fever than we've been seeing (say 38.5° to 39° plus) then they will restart with first line antibiotics as per a new admission. They will continue to culture so they have samples collected whilst Adam isn't on antibiotics (all but the first Sunday have been whilst being treated). If there is no increased temperature spike in the 48 hours then the assumption will be (provided the new cultures also show no growth, either bacterial or fungal) that the moderately elevated temperatures are disease (most likely), or treatment (less likely), related. Either way, if they are controllable with paracetamol we should be able to get Adam on a flight to America.

All somewhat unexpected, and it didn't stop there. Adam's true haemoglobin was 7.1, making as much of a mockery of yesterday's 8.8 as today's earlier 19.1. Platelets were 20. Meaning transfusions of both would be required. However, all things considered, and with mine and Alison's agreement, the doctor was happy for Adam to be released on home leave and return first thing tomorrow morning to be accessed and transfused.

Now that put a smile on Adam's face.

He's not been discharged, he has been released into our care; we are responsible for monitoring his temperature overnight and taking appropriate action should it rise higher than it has in the last couple of days. His room at the hospital is still there for us to take him straight back up to the ward if the need arises. There's no getting carried away. Adam still isn't eating, we have to get that back on track after the stomach problems. And most likely he is going to throw a fever and wind up back on first line antibiotics. But all things considered this evening has been a lot more pleasant than it had threatened to be for much of the afternoon.