Wednesday 8th September
Timmmberrrr ! Today we had 3 large fir trees cut down from the front garden. Joseph was fascinated and it’s given us a lot more light without affecting our privacy. He had another good day at school and came out with two ‘good work’ stickers stuck to his jumper. It’s odd not having him around the house but it frees me up to get things done. Only I don’t, of course. An hour on the phone discussing work projects in the pipeline is the most constructive thing I manage all morning. At lunchtime I grab an hour down the gym but my brain’s still in hospital and I can’t concentrate on much else. Whilst I’m there I manage to switch Joseph’s swimming class. Whether he’ll actually learn anything from an instructor that barks commands from the side of the pool remains to be seen. Ever since he started classes 2 years ago, Joseph has always stayed behind after his lesson to play with another boy called Joseph. Yesterday, however, a lifeguard told me and Joseph the second’s mum that they weren’t allowed in the pool without us. This rule has never been mentioned or enforced before. Apparently there’s been an ‘incident’. Quite what the ‘incident’ was is anybody’s guess, but I expect it had something to do with the lifeguards being too busy chatting to watch the children which is generally the case there. Reinforcing a redundant rule is a complete over reaction by Virgin and it’s not the first time. Previously, a mum watching the swimming class from the sidelines became hot and fainted. Virgin’s reaction was to order all parents to wear swimsuits so they wouldn’t overheat ! A similar case of over reaction came to light at GOSH this week. It appears that a few years ago, a mother poisoned her own baby there by putting salt in her milk. Since that day, there has been no salt in the kitchens and the fridges that contain the milk and the sterilized water have had padlocks on. This would be fine if it helped prevent anything similar from happening, but all it does is slow down the nurses who have to comb the ward for the only set of keys every time your child needs a drink. This can take anything up to 45 minutes and doesn’t stop you poisoning your child anyway as you can add anything you want to the bottle in the privacy of your own room. It’s late evening before I catch up properly with Claire who’s currently on hospital watch. Josh had a CT scan of his lungs and heart today but there’s no feedback on it yet. Amazingly, Josh’s speech has continued to improve and he’s added several new words and phrases to his vocabulary. Today he asked Mum to stroke his head, for more water and if he could have a bath. He even asked ‘ Where’s Daddy ?’ I wish I’d been there for that, although technically if I had been he wouldn’t have said it because he would have known where I was !
Thursday 9th September
Before leaving for hospital, I clean up outside as best I can. There was a torrential downpour when the tree men came yesterday and there’s pine mulch stuck to just about everything. Fortunately, I managed to get a towel down in time to save the porch and cellar from flooding as our handyman still hasn’t managed to get his hands on Claire’s big butt. Josh is sitting up in bed when I arrive and looks completely different. Many of his bruises have faded in the last two days and his eyes have lost their puffiness. His face is looking far slimmer than it has for many months and there’s a twinkle back in his eye. Claire tells me all the things he’s been saying since we spoke yesterday. They gave him one of the psychotic drugs to calm him down last night as he was upset and scared of the dark. It’s probably hallucinations again, but he’s now able to articulate so much it’s staggering. He asked Claire to carry him downstairs, presumably thinking he was at home. When she told him he was in hospital he asked if he could be moved to another ward ! When he’s wet or dirty he asks to be changed and he’s even smiled at a few funny things happening in the room. Every time he opens his mouth it’s such a joy to hear his voice. I feel like a first time Dad hearing his son’s first words and want the whole world to know what he’s saying. Josh continues calling me ‘Mum’ long after Claire’s gone, but hopefully he’ll cotton on soon. This often happens when we swap over. Joseph does exactly the same thing at home. As the afternoon wears on, Josh’s new drug arrives that helps his calcium go where it should – to his bones. They have to monitor him every 15 minutes while it’s infusing as it lowers his blood pressure dramatically, so he finds it impossible to rest. He tells me he wants to go to sleep then asks if he can have the fan on. He tells me he’s not comfy and we change his position several times. He tells me which side to turn him on and whether he wants a pillow or not. During all this he also does another enormous poo which I clean up just as my dinner arrives. It’s a strange looking beef curry and, for a few worrying moments, the nurse stares at the plate, unsure as to whether she should weigh it or not as it’s almost identical in colour and consistency as his last nappy. At around 7pm Josh starts to nod off. I’m lying on the bed reading Stephen King’s ‘Under the Dome’ doing the same thing, even though it’s a darned good read…
Friday 10th September
Bloody Hell ! Josh’s words, not mine, but the perfect way to sum up our night. We hardly slept at all. Josh just couldn’t settle. It was either leg cramps or tummy pain or itching or just being generally fed up. He articulated all of this very well and his comprehension of where he is and what’s around him is far greater than we’d ever hoped for in our wildest dreams. At one point he said he was hot and asked if he could have the fan on. Then, when I told him he couldn’t have a bath for the umpteenth time at 4am he said ‘ But I’ve been asking for ages’. Twice in frustration he uttered the words ‘ Bloody Hell !’, which I told him was okay for once as we completely understood his frustration. Neither of Josh’s ‘ guaranteed to calm him down and make him sleep’ drugs managed to do what they said on the tin and on the rare occasions when he did drift off, his oxygen level dropped so sharply I had to stand over him trying to reposition his mask on the pillow for ages to get it back up again. I can’t have managed more than an hour of sleep all night. On top of that, climbing in and out of bed every couple of minutes to get him water, reposition or change him has sent my back into spasm again. At around 9.30am I finally get him off to sleep by putting Cartoon Network on, even though he kept insisting he didn’t want to watch TV. I’m shattered now and hardly able to string a sentence together, but wouldn’t have it any other way. If this is the price we pay for Josh’s recovery we’ll gladly pay it twice and thrice over. Josh has a heart echo at around 11am to check if the fluid’s increased around his heart. It appears to be the same but, more importantly, isn’t affecting his heart at this moment in time. The occupational therapist arrives seconds later with a hoist from Dinosaur ward and, with great difficulty, we manage to hoist Josh up into the air in his sling and lower him back down into his made-to-measure wheelchair. He manages to sit there for 10 minutes while the doctors discuss the latest developments. The fluid on his lungs isn’t showing any sign of infection, the coagulation is hopefully from a previous attack . His Risperadal dose will be halved tomorrow. His Calcium control infusion will be repeated today and tomorrow so he will have to be closely monitored again. One of the doctors has the bright idea that I take Josh out in his wheelchair sometime. My suggestion that I take him clubbing one night, given that we’re both officially nocturnal, is for some bizarre reason not taken seriously. Once the doctors have gone, I head off for a client meeting with the charity Railway Children. I was initially a little worried about being a railway ‘sleeper’ and dozing off in the middle of the briefing but the 90 minute session appears to go well unless I’m delusional from lack of sleep. Josh was dozing when I left but woke soon after and was asking for me. He’s having a tough day getting to grips with recent developments and often ends up shouting or in tears. When I come back, there are three people in the room trying to change him. The two nurses have both had operations and can’t lift him and the play therapist that sat in with him is trying to help but not sure how to. A few minutes after I’ve cleaned him up and settled him back down he’s violently sick all over the bed clothes and himself. This appears to make him feel better and after an hour or so of moaning uncomfortably he drifts off again and I try to grab a few hours kip myself. I’m woken a few minutes later by the senior staff nurse telling me we’re losing the TV, radio, internet and gaming facilities in our room. Basically the much heralded, new fangled, state-of-the-art entertainment systems haven’t been mounted to the walls properly and are a health and safety risk. Whilst everything appears pretty secure to me, it’s always felt dangerous to have the TV attached to a thick, heavy metal arm that juts out over the patient’s bed. The not-so-carefully thought through plan to make the TVs safe is for 3 workmen to traipse into Josh’s room, push the arm up against the wall and stick a flimsy bit of tape across it as a warning not to use it. It makes the room look like a Miami crime scene. All they’ve done by is try to absolve themselves from any legal liability in case of an accident. The TVs won’t be fixed until we vacate the room by which time, of course, it’s irrelevant. For the record, the brand new taps in our room have another 2 weeks wear left in them before they pack in and the chilled water tap in the kitchen I was so excited about last week has already broken. Talk about false economies. Ten minutes after taping the TV to the wall one of the three stooges returns to turn the TV round so it can still be watched - although not, unfortunately, by the patient. His helpful suggestion that we turn the bed round is met by my tired, near hysterical laughter as Josh is attached to 6 machines with plugs on and there are no power points on the opposite wall. Having tiptoed round the room so as not to wake Josh, who is finally asleep after 36 hours, the workman leaves the room only for a passing cleaner to point out that Josh’s door doesn’t close properly. Quick as a flash he whips out a hammer and batters the catch into submission, waking Josh up in the process. Honestly, you couldn’t make this stuff up. Luckily Josh isn’t too distressed and sleeps on and off until around midnight when I request he’s given the proper doses of the two drugs recommended to settle him properly. It does the trick and we both have a good night.
Saturday 11th September
Hey, it’s the weekend ! Not that I’d know if it wasn’t for the tumbleweed blowing gently down the corridor. Quite why the ward’s so empty at the weekends, I have no idea. Obviously, the hospital itself is relatively quiet with no day-care patients coming in, but on the wards you’ll find the same amount of patients and parents but with less than half the staff to look after them. It’s not just doctors and nurses that disappear. Cooled boiled water for the children goes walkies, meals don’t always materialize and there’s always a towel, blanket and sheet shortage. Once you’ve been in here a while you learn to raid the linen cupboard on a Friday and stock up, hoarding them away like some demented squirrel preparing for hibernation. I called Claire last night to break the news that she and Josh can’t watch X-Factor today or ever again here. She wasn’t happy but I’ll record them on disc so she and Josh can watch them during the week on the portable DVD. The last few days have been harder than ever in some ways as Josh is become more and more aware of his limitations. Sometimes he just can’t find the right words and asks for water even when he doesn’t want it, then lashes out in anger when I try to f=give him some. He asks me to help him constantly, but most of the time I can’t because I’m unsure of what he wants. He’s very tearful all the time and it’s terrible to see him this way. There’s a plan to get a waterproof sling for him on Monday so we can hoist him into a bath in the room opposite, as the hoist won’t fit in our bathroom. For now though, he holds me personally responsible for him not being able to have a bath and when I can’t conjure one up out of mid-air, he tries to twist my face off. He’s started asking for mum now and wants to know when we can swap over. Oh yes, it’s tough in a whole new way but far easier to take now I’ve had a good night’s sleep. Somehow, we need to get Joshua doing more during the day to take his mind off his predicament. He won’t let us read to him or even watch the football matches I’ve recorded for him. He just sits there, gently moaning and becoming more and more frustrated. I’d just managed to get him to watch a bit of live TV, but of course that’s out of the question now until we’re discharged, which could still be months. The morning goes relatively quickly and Claire arrives soon after l track down our missing lunch. Josh doesn’t wake up As I bring Claire up to speed. He’s due another infusion to help reduce his calcium build up which actually increased after the last one, which nobody can explain. I’m away by 3pm and pick Joseph up by 4pm. It’s sunny enough to play football in the garden before we eat and play Super Mario Kart before bed. Claire reports in to say Josh is saying less and has become a little more confused. They managed to hoist him into his wheelchair again for 10 minutes in the afternoon but it will need a few adjustments before we can take him out of the room and up and down the corridor in it. The initial euphoria of hearing Josh speak again is starting to wear off a little. We still have so far to go and have no idea how this will all end as he is still extremely ill. I settle down with a Brazilian cocktail ( far more enjoyable in the right measure…) to watch Match of the Day and soon find myself feeling more optimistic about the future. Everton go 3-1 down to Man Utd but manage to hit two goals in added time to force a draw. The fact I can’t share this news with Josh or even get him to watch the match at hospital when I’m back on Monday sends me crashing down again and it’s impossible to hold the tears back.
Sunday 12th September
Happy Anniversary ! Hard to believe, but the blog was a year old this week and it’d be a shame to let that momentous occasion to pass without saying thank you for reading and for all your support during that time. I’ve written before about how it makes our lives so much easier knowing that you’re all up-to-date on events and avoids those awkward silences when it’s really difficult for people to know whether to ask how Josh is doing or not for fear of upsetting us or hearing terrible news. We’d spent pretty much a year in hospital before I started writing but I’d always kept mental notes of those first 12 months and there are many references to those early days in last year’s pages should you ever want to read the full story. It goes without saying, although I always say it now and again anyhow, that this could just as easily be Diary of a Hospital Mum. Every day and night I spend at home, Claire’s with Josh at the hospital and vice-versa. If we didn’t swap over and experience the same things, we wouldn’t have a hope in hell of explaining to each other what it actually feels like in there looking after him. Words can’t even begin to describe how emotionally and physically draining it’s been one moment or how ecstatic you can feel the next. For every story I have, Claire will have another - told without my sarcasm because she’s better than that. She’s far from a shrinking violet though and very much rules the hospital roost. Her medical knowledge is astounding and somehow she manages to be everyone’s best friend but still has them running scared when she needs to. It’s a rare gift that she practices on me constantly and perfected when she worked at Armani. I have absolutely no idea what any of us would do without her. Last night was a bad night for Claire and Josh. He had her up and down for much of it and it took four doses of his drug to stop him getting upset and calm him down enough to sleep. The leg cramps, tummy pains and itching are increasing and we only have a few slender theories as to why. He’s still very confused and Claire was feeling very down this morning. True to form, Josh has switched allegiances again and keeps calling her ‘Dad’ all the time and at one point said ‘ I want Daddy back because you’ve got two heads.’ I’m unsure if this was a hallucination or not. His confusion is increasing and he pleaded with Claire to take him downstairs again and keeps complaining about having needles hanging out of his arm. His HB is low again as are his platelets, so he’ll have two transfusions before the day’s out. Far more worrying though, is that his calcium level has refused to come down and he’s overloaded with fluid again because they can’t give him the drug that empties him out as it would lower his blood pressure to a dangerous level. Quite why his calcium isn’t going down is particularly troubling and Claire found some pretty shocking possibilities written in his notes that haven’t been mentioned to us yet. Let’s hope they’re just wild stabs in the dark. Today is a mad scramble to get all my chores done in the morning as Joseph and I are off to the Royal Gala Horse Show at the O2 in the afternoon, courtesy of a friend who offered us their tickets. It never fails to astonish me how O2 can run one of the most impressive venues in the world so smoothly but still can’t manage to give me a signal on my mobile phone at home. It takes us only 30 minutes to drive there, park and order at Pizza Express. The first half is dressage and it’s technically brilliant I’m sure, but a little dull. The organisers appear to know this and have tried hard to liven things up with music and lights and even included a belly dancer which was more a case of undressage, if you ask me. The second half is far more exciting with a spectacular mix of horsemanship, horse ballet and circus acts that keep Joseph on the edge of his seat until the very end. Actually, he fell off his seat and cried at the end and I had to scoop him up and carry him back to the car as the riders and horses lined up to take a bow. We were home in no time. Walking through the back garden to the house, Joseph spotted a cricket which hopped onto his finger and wouldn’t leave him alone. He’s adopted it as a pet and I’ve made it a temporary home out of one of Joshie’s plastic elemental feed bottles. Mum will be pleased. Joseph is now collecting Deadly 60 trading cards. I was so excited when I found them today. They’re like Josh’s Match Attax football cards only with dangerous animals. Fortunately there aren’t any crickets on the list. Claire sounds far happier when we catch up later. One of the nurses managed to find a sling made of net-like material on another ward, so they managed to give Josh his much requested bath. It took about 90 minutes as they had to hoist him out of bed, into his wheelchair, across the corridor to a bigger bathroom and then hoist him out of the chair and lower him into the water. It wasn’t very deep, as he can’t get his Hickman line wet, but Claire said he seemed to enjoy it and started giggling at one point. She managed to support his head with a pillow and give him a good hair wash too. Unfortunately, he was so relaxed that when they got him back to the room and were hoisting him back into bed he opened his bowels and unleashed a torrent of diarrohea all over the floor. He’s been on far better form today and actually laughed as he listened to a couple of Horrid Henry audio books in bed. At one point, in absolute despair he told Claire that he just wanted to go to sleep but didn’t know how to ! Josh’s creatinine and urea levels, which are basically a guide to how well your kidneys are working, were so high today that the nurse called the renal team in. They had lots of theories but nothing concrete to go on. Claire’s been Googling on her iPhone again and discovered something called Hyperparathyroidism. I’ve looked it up briefly and basically, it says that a growth on the parathyroid glands causes them to make too much PTH – a hormone that controls the levels of calcium and potassium in your body. This generally results in too much calcium in your bloodstream. Symptoms are feeling tired and weak, general aches and pains throughout the body, abdominal pain, heartburn, vomiting bone and joint pain, confusion and memory loss and high blood pressure. As Josh has every single one of those, it just might be that Dr Claire Canning has yet again proved herself to be more on the ball than the entire medical staff at Great Ormond Street. We shall see, but seriously, it wouldn’t be the first time…
