I figured it was time to update …
Adam had 3 lovely days at school last week. We started to get a routine going that meant everything was done and dusted, and he was ready to begin lessons at 10:30 after first play. Next step was to try and bring bedtime back a little so perhaps the morning routine could be done even quicker, and he could get to school sooner. He stayed right through until the end of school and Alison picked him up along with Jessica. He ran home, he scootered home, it was … almost … normal ...
On Thursday Adam was admitted to Epsom General with a line infection, and there he remained for the next 3 days. Yesterday he was discharged into our care, but he's still having antibiotics. Alison has taken him up the hospital tonight for them as they're every 24 hours. It's only a small amount of antibiotic that is pushed intravenously through his central line, so it doesn't take long. From tomorrow we're hoping the community team will be able to come in and do it at home to save us the trouble of taking Adam up to the hospital every afternoon.
Now I shouldn't complain because Adam has had his central line in for over two-and-a-half years and this is only the second line infection he's ever had. The other was only a month or two into treatment. I say shouldn't complain, but this is me we're talking about. I can always find something to complain about, but we'll get to that later.
Although Adam has a line infection, confirmed through blood cultures (gram positive) he isn't ill, hasn't been ill. This has been going on for a while, but it's only now looking back that we realise. It started we think in Germany. I actually wrote about it on here, we thought the technician got residue from the alcohol spray in Adam's eyes before his MRI scan. He complained of dizziness and couldn't see. He was fine afterwards, and we thought nothing more of it.
After we returned home we resumed the normal routine of our Community Nurse coming in to change Adam's bungs and dressing, and take weekly bloods to be tested for the Royal Marsden. Whilst I was away at the symposium in Germany Adam had another episode where he complained as his line was being accessed. Again it didn't last long, he recovered quickly, and his blood was drawn as per usual. However, for the remainder of the day he was subdued, and spent far more time than normal lounging on the sofa watching the television.
At this particular time we knew that we had this suspicious finding on Adam's MRI, and in addition had found out only a couple of days beforehand that cells from his bone marrow had tested positive for anti-GD2 staining at the lab in Vienna, and were undergoing further analysis. So I can tell you how Alison was feeling when Adam started being lethargic and not wanting to do anything. She was worried, and all manner of nasty thoughts were going through her mind about disease progression. Whilst it hadn't escaped her that there was a possible, even probable, link between what had happened that morning and how Adam had been during the afternoon, under such circumstances no amount of rationalisation is going to persist. You can pull yourself away from those ugly thoughts for a couple of minutes and look at things perfectly objectively. But once you're no longer completely focussed on trying to be objective those dark thoughts coming roaring back in. It's not difficult to convince yourself that what a minute ago was you being objective wasn't actually you being objective at all. In fact it was just you trying to come up with something to give you an excuse not to face the obvious and horrible truth. You think I'm crazy? I'm not crazy. This is just how it is.
Anyway I digress a little. We got the results from Vienna, the bone marrow was clear. Adam was back to his normal self, going to school, plenty of energy, wanting to go outside and play football in the dark at seven o'clock in the evening. Last week when his bloods were done Alison and the nurse were on the lookout for problems, but all was fine. This Thursday, however, as the nurse pushed the smallest amount of saline into one of Adam's lines he was off again; light-headed, dizzy, can't see. At that point everything stopped and Alison took Adam up to the hospital to have him properly checked out.
As I work in town I walked up to the hospital at lunchtime to see what was going on. We came to the conclusion that there must be an infection in the red line, but the white line was fine. Adam's hickman has two separate lines (called lumens) inside it. They can be used independently of each other for intravenous access. When the nurses come to do bloods they alternate which line is used, so our hypothesis would account for Adam being fine one week but not the next. He had also been fine the previous day when they put contrast through his white lumen at the Royal Marsden during his repeat MRI.
When I got to the hospital Adam was fine. Bored, but fine. They had taken bloods to be cultured (to see if they would grow any bugs in the lab, which would confirm infection). Adam's blood counts were okay, he wasn't neutropenic i.e. his neutrophil count wasn't so low as to make his immune system unable to mount any defence against infection. CRP level (infection marker) was normal. We were discharged … almost. Adam started to complain that he was cold, but he felt hot to the touch. The thermometer confirmed it, 38.2°. Pants.
I did the correct and proper thing, I went and told the doctor. And she told us that under these circumstances we could no longer leave. They called upstairs to the inpatient ward and there was a cubicle that was about to come free that we could move into once it had been cleaned. Marvellous. Over the next 60 minutes or so Adam's temperature remained elevated, though not hugely so. The highest temperature we recorded was 38.3°. After that it subsided and by the time we'd gone upstairs it was normal again, which is how it has remained ever since. Ironically under these circumstances we almost certainly wouldn't have even brought him to the hospital had we been at home. During the early days of chemotherapy, when he became febrile and had no immune system then yes we complied totally with 'the protocol'. However, as things stood now there was nothing to be done except head upstairs where they started Adam on IV antibiotics (teicoplanin), a process that took all of two minutes.
By the following day Adam's blood culture from his red lumen had already grown a bug. Adam, though, was entirely fine. He was eating normally, sleeping normally, behaving normally, no fever, no clinical symptoms. Oddly enough he was rather bored and at a loose end, and wanting to go in the playroom which we have always designated as being completely off-limits (full of germs). I wanted to take him home, to have some food, stretch his legs, play with his brother and sister. However, the full weight of medical opinion was brought to bear. They couldn't allow me to do that. Well actually they couldn't stop me, but they put the fear into Alison to such an extent that we ended up going nowhere. Maybe I was wrong, maybe I was irresponsible, I don't know. I just figured this had happened twice before; he'd got a bug in his system from the red lumen, he'd had a reaction, he'd fought it off, he'd been fine again (until the next time). I wasn't arguing against the antibiotics, we had to have those to try and eradicate the bug. The next course of action, if the infection is too embedded in the plastic is to have his line removed, but we haven't reached that point yet. But I honestly thought the talk of sepsis, rapid deterioration, and being fifteen minutes away from the hospital not being good enough, was overblown. We wouldn't even have been in the hospital overnight had his temperature risen fifteen minutes later than it did. Where we really that fortunate that he developed that mild fever when he did?
All of the doctors at Epsom General know what a complete pain in the arse I am now anyway, if they didn't before. Alison's known for years, so it didn't come as much of a surprise to her.
So we stayed. Alison went home, cooked dinner and brought it back to the hospital. Proper little meals-on-wheels when she needs to be. Since we were last in Epsom hospital they've received some Starlight entertainment centres with a TV, DVD player, and Nintendo Wii; that was definitely something Adam enjoyed having the use of in his room.
The next morning (Saturday) I pestered Alison about when Adam would be allowed out of the hospital, but it was clear once the doctors had done their rounds they were still not supportive of such an idea. Don't get me wrong I completely understand (and understood) their stance. If they said it was alright for Adam to go home and then something happened the ramifications for them professionally would potentially be very serious indeed. I also like everybody up at Epsom Hospital, and have never had a bad word to say about any of them. I just like being contrary and having something to moan about is all.
Jake and Jess bugged me to take them to the hospital after breakfast, which is really rather odd as normally Jake can't wait to get out of the place. I weighed it up and figured if I took them straight away Alison would have to come home and make lunch. So off we went.
I imagine Alison would have been in the process of packing the food bags ready to bring them back to the hospital when the doctor came in with the news. She'd spoken to the Royal Marsden and they were happy for Adam to go home for the rest of the day, and come back to the hospital in the evening to have his antibiotics and sleep. Having played Scooby-Doo on the Wii for a while at the hospital Adam and Jessica proceeded to come home and play it on the PS2 for the rest of the day until Alison took Adam back just before 7pm.
On Sunday I dropped Jessica off at the hospital and took Jake to his football match. I checked my phone as I got in the car to drive home and saw Alison had sent me a text message … "Discharged!" So here we are, now a question of waiting to see if the course of antibiotics is enough or more drastic action is required as far as Adam's central line is concerned. One thing Alison and I are both agreed upon is we are not going to mess around, if we have another incident that line is coming straight out …