Sunday 25th July
By the time Joseph and I have picked up his free Toy Story 3 sticker book, had breakfast and played Harry Potter for an hour, I’m off to London for the change over. Joseph is at a friend’s house all afternoon, so Claire and I have a little more time to catch up. Just as well as he has a new bed I need to be briefed on that constantly re-adjusts the mattress to stop him getting bedsores. He sleeps through my arrival, which is hardly surprising as Claire tells me he was screaming in pain and constantly itching until around 4am, so they’re both shattered. She tells me that Josh has been shouting out for me several times which manages to make me feel happy and sad in equal measures at the same time. The doctors believe his input of fluids is far greater than his output and give him an IV diarralite to make him wee again. When he doesn’t after an hour, we try to wake him with no success. I point out that his arm is cold but am told that’s because it’s been near his oxygen supply, which it hasn’t. Shouting his name, sitting him up and even pinching and slapping him brings no real reaction and after nearly 2 hours of poking and prodding, we rush him downstairs for an emergency brain scan. He’s even harder to rouse once we’re down there and lifting him off his bed for the CT scan takes three of us a good 15 minutes. If you’ve never seen a brain scan unit, and let’s hope you never do, it’s about as space age as you can get. Josh is strapped horizontally onto a narrow platform with a smaller extended platform ( like a diving board) that supports his head. Everyone clears the room, although I’m allowed to stay if I wear a lead coat, and the platform slowly slides him into position, inside what can only be described as the world’s largest polo mint where the scan takes place amongst spinning lights and bizarre noises. Unlike an MRI which can take hours, it’s all over pretty quickly and we’re joined by one of the resident doctors. The scan appears to be clear, but by then one of the CPR team has turned up and they look concerned. They do something called a Blood Gas, which gives you an up-to-date snapshot of the balance of everything in his body. They believe he is severely and dangerously dry and needs fluids. We rush him back upstairs and put IV fluids through him at a rapid rate as she explains that the fluid in his body must be leaking into his cells rather than going where it should. His body is shutting down certain areas, like his gut and his skin, in order to survive and get the oxygen in his blood to more vital areas like his brain and his heart. As the fluids go in, his heart returns to a more normal rate and his limbs start to warm up. All the signs of the last few days have pointed towards this happening, as far as she’s concerned, but have been ignored. There’s a danger that looking after Josh is becoming habitual for many of the nurses and when we draw attention to his rapid heart rate it’s just shrugged off as one of those things. In intensive care the monitoring is exactly the same, but they’re programmed to interpret the observations and act on them. She tells me there are lots of children in intensive care that are nowhere near as ill as Josh. This is no comfort at all. I call Claire around 11pm as it’s the first chance I’ve had and bring her up to date. Josh’s numbers settle down and he appears to have a good night, although there is a panic at around 2am that he’s had a mini-seizure. I’m convinced he didn’t. After nobody being bothered about his dangerously high heart and respiratory rates, they are suddenly panicking every time just one of them goes up the tiniest bit. Care here lurches from one extreme to another sometimes. Whatever happened to good old-fashioned middle ground ?
Monday 26th July
If I didn’t write this blog, I really wouldn’t have a clue what went on in here from one day to the next. Come to think of it, I literally wouldn’t know what day it was. It feels like I’ve been in here night after night, but it’s only been two. I was convinced it was the end of the week until I wrote the date at the top of this entry. God, it’s tough in here. So different to every other hospital experience we’ve ever had. Today was no different in that respect. After a relatively calm, stable morning the afternoon and evening were shocking. What began with Josh having a huge, hard, distended stomach that nobody really picked up on until I pointed it out, soon turned into him screaming out in pain for several hours – as if he was trying to pass something. I rubbed his tummy and stroked his head for a couple of hours to try and soothe him a little, but I’m not sure how much good it did, Several doctors came and went, a stomach x-ray was taken, the pain management team came with some IV morphine but nobody really talked about what they thought was going on for several hours. Our team of doctors think he has an infection in his bowel now and that it’s full of air that could have got there for a number of different reasons – each more serious than the last. His feet are still a little cold at times so he needs more fluids, they’re putting him on two more anti-biotics which are particularly aggressive and now, only now, are they actually starting to take his increased heart and respiratory rates seriously along with his temperature which is actually lower than the last couple of days. His CRP which is a measure of inflammation, which should ideally be under 10, has doubled over night to 220. His pain comes and goes for the next few hours and he starts to pass diarrhea again. They try and aspirate air out of his stomach through his NG tube but there is only so much they can remove. There is so much stuff being pumped into his body you really do wonder how much more he can take. Just when Josh starts to look a little more settled, a tummy doctor appears who’s pretty thorough and extremely brutal. I like her. She is extremely concerned about his breathing and finds it hard to believe he can carry on at that rate for much longer. The emergency team are put on stand-by once again. I’m getting to know them well. She tells me that many children can develop tummy problems after a BMT and often there is nothing they need to do. Sometimes they need surgery though and it’s a difficult call to make when they are in Josh’s state. She tells me he’s a really poorly little boy, which of course I knew, but sometimes you actually want to hear the truth rather than just a list of what drugs they plan to treat him with. If you’re not careful you can be conned into believing things aren’t quite so serious. Things are as about as serious as they can get at the moment. I’ve talked about the need to turn a corner, but every time we do we run smack into a juggernaut coming the other way at 150 mph. Where on earth will this all end ? Another doctor turns up around midnight. She is equally concerned and wants a chest x-ray done immediately. His breathing is becoming even more labored and there’s still no explanation as to why his tummy is so big. There could be a problem with his pancreas or he could have perforated his gut. His extended tummy could be putting pressure on his diaphragm making it difficult to take air in. There are so many theories I couldn’t begin to list them all here. Not knowing what else to do, I just sit on the bed and start to write. Now what day was it again ?
Tuesday 27th July
Things went from worse to much worse in the early hours of the morning. The results of the x-ray weren’t too bad and suggest that whilst there’s a little more pressure on his lungs it’s nothing significant, His bloods, however, show high levels of a couple of enzymes from the pancreas which are leaking out. This means he has Pancreatitis which is basically inflammation of the pancreas. There is a continuous 24 hour infusion which can help this to some degree, but the best form of treatment is to bypass the stomach completely which means replacing his ng tube, or adding another in the other nostril, with a much longer line that carries everything past the stomach, gall bladder and pancreas to rest them. The CSP doctor who was on duty last night explains all this to me and much, much more and ends up talking for over an hour and a half. Most of what she says you would need a biology degree to understand. Most of it is irrelevant to me at this exact moment in time – I just want to know what it means for Josh rather than have science lesson and listen to metaphors about women’s ovaries. I listen politely and manage to ask the questions I need answered. The upshot of pancreatitis is that Josh can no longer have water which has been his only pleasure for the last 3 weeks. Far more seriously, it means that all his oral drugs will have to be switched to IV and those that can’t be switched will have to be dropped with the exception of his anti-seizure which has just been changed and can’t be given IV. What a mess. It’s around 3am when I climb into bed. I hear them coming in to monitor Josh from time to time and even changing him, but am unable to stir myself enough to check out what’s happening. Sleep is the only retreat I have. Hopefully it’s the same for Josh. I wake at 6am and leap out of bed as it sounds like they’ve put him on a ventilator which is what happened to Alex in Portugal. Fortunately it’s just the sound of excess water echoing through his hydrated oxygen mask. I empty the tube and the sound disappears. His tummy is slightly less hard today . They’ve attached bags to his NG tube and his stomach peg, even though it’s blocked, to draw off any fluids. The senior nurse asks me where we should put his new line for the continuous infusion. We settle on the top of his arm as anywhere else will get tangled up with all his other lines. It’s so short that it’ll be very difficult to roll him within the bed when we change him or the sheets, but it’s the lesser of 3 or 4 evils. I leave a message for Claire to call me as I suspect she’ll want to be around for the main consultant’s ward round in light of what’s happened and that will mean organizing cover for Joseph in the morning as well as the afternoon and early evening. I try and explain what’s been happening without sounding distressed, which isn’t easy, but I just about manage. It doesn’t really make any real difference as she knows as well as I do that he’s fighting so many battles on so many fronts now, that it’s going to take a few miracles to come out of this. But hey, miracles happen sometimes, don’t they ? Claire arrives in record time and is visibly upset as you’d expect. I’ve been more than a little shaky since I woke up and am only just keeping it together. The doctor’s round is a somber affair, Pancreatitis is rare but treatable. The fear is that it’s secondary to an infected gut, or worse still, there’s free air in his stomach which could be leaking in from a hole or tear in his bowel. They admit there are more questions than answers at this point t that they hope to learn more from the CT scan. Claire and I escort his bed down to the MRI / CT unit. It’s probably the first time I’ve been down there wearing clothes rather than PJ’s. As we slide Josh over onto the platform for his scan, a remarkable transformation takes place. He opens his eyes and starts to interact with one of the radiologists. He nods his head in answer to some of her questions and even gives a comedy shrug with his arms outstretched when he doesn’t know an answer. Claire and I don lead coats and stay with him while the scan takes place. Back in his room, we take his oxygen mask off and place it on his pillow to give him a little freedom. He greets this with a loud cheer which makes us laugh. It even looks like he’s smiling, although it’s hard to tell with all the dry skin hanging off his lips. Claire freshens him up while I untangle the spaghetti junction of wires from his machines and infusions and plug everything back into the wall. He needs more Piriton for his rash and is fast asleep again within minutes. Seeing a glimpse of the real Joshua again has given us renewed hope. We hang around for a few hours in the room together chatting, playing cards and sharing the relatively inedible meals we’ve ordered for Josh but he can’t eat. It’s 4 hours before the doctors get back to us although we get a visit from a surgeon in between who was on standby to operate. He informs us they can’t see a perforation in the bowel and the pancreas is not so inflamed that he needs surgery on that either. This is a huge relief. By the time the doctors come in to confirm this, we’re in a much better place than we were this morning. Josh is snoring so loudly as they bring us up to date that it’s hard to keep a straight face. The official news is the worst good news we’ve ever had or the best bad news – it’s hard to say. The extended stomach is due to air and fluid, the fluid may well be blood as his HB has dropped significantly. There is some kind of infection in the gut, but it’s unlikely to be a return of his original problem. The pancreatitis isn’t as bad as feared. It’s a bizarre feeling that we both have. Josh is now fighting yet another two serious and rare infections, but we still feel uplifted by the fact it isn’t three. It’s a minor victory but we’re happy to settle for that. It’s gone 6pm before I leave and 8pm before I’m home and reunited with Joseph thanks to Claire’s sister dropping him off rather than me having to collect him. Big hugs and kisses all round and , even though it’s late, we spend an hour playing before I put him to bed. I fall asleep beside him and don’t wake up until after midnight by which time it’s too late to call Claire. She’s texted me to say he’s okay and very vocal. There’s a good chance he’ll be passing bloody diarrhea all night so she could be in for a rough ride. On the other hand, he just might save it all up for my return on Thursday…
Wednesday 28th July
Coming home is like stepping into a parallel universe. A world with so much joy and laughter, you can almost forget all the pain and worry of life in hospital with Josh. Almost. Breakfast in a sunny garden with Joseph is followed by an hour of football keepie uppie on the deck. More footie in the park a little later, then we’re clambering over the slides and swings and racing each other backwards across the field. After we’ve picked up more free Shrek stickers from the newsagents and had lunch, it’s off for a long, long swim together. Sitting at home afterwards, like two wrinkled prunes, we build a Lego boat while we get our breath back, then play Harry Potter on Playstation after steak, chips and garlic butter. What a perfect day, except of course, it isn’t quite perfect. Playing football without Josh is like watching Wise without Morecombe, Ant without Dec, Laurel without Hardy. It’s just so damned wrong. We should all be together. Josh has started hallucinating again and shouting out Joseph’s name, although he calls him by his nickname, Dobie. He also thinks he keeps seeing his friends in the room Then the bad visions come too – along with the headaches. Claire had an okay night with only a couple of nappy changes. No blood as yet. The fungal infection they weren’t sure whether he had or not has come up negative on the second test, which is good news. He’s had a stable day although his temperature is starting to rise again. I’m typing this as I lie on the bed next to Joseph, who’s fast asleep. Hopefully I’ll stay awake this time as there’s a fair bit to do before I turn in and I can already feel my eyelids becoming very heavy…
