Wednesday 21th July
Tick follows tock follows tick follows tock. The Guinness ads told us that good things come to those who wait. Let’s hope so, as waiting and praying is pretty much all we can do at the moment. Swapped over with Claire around midday, although it took a good hour for her to bring me up to speed. Josh’s bottom sores seem better with the pads protecting them and we’ve dispensed with his pull-ups and just draped a large, absorbent pad around that area – front and back. It lets the air reach his bits and, whilst it doesn’t stop the sheets getting soaked or soiled, it doesn’t send his heart rate soaring every time we change him, which is a definite plus. His rash has to be treated with a steroid cream mixed with liquid soap which we have to apply to around 75% of his body twice a day. Then there’s a few foot exercises we need to cover off every day, otherwise we’d have to put his splints back on. Then there’s the sticky sensors that attach his ECG electrodes to his body that need replacing whenever he moves too much as they only ever seem to stick to skin once. By the time you’ve done all that and changed him and the bed a dozen times, there isn’t much day left. Josh is definitely looking healthier today and a little more responsive, but he’s shattered and hardly moves. Hardly surprising as he often had around 10 different wires attached to different parts of his body at the same time. Pinocchio never had it so tough. The only things to happen today of any note are his blood and platelet transfusions and a chest x-ray at around 8pm, just to check there’s no fluid setting in his lungs. He’s given the all clear about an hour later and we both enjoy a long, peaceful night – disturbed only by a couple more bed changes. His, not mine, I hasten to add.
Thursday 22nd July
Today is no different. It’s still all about waiting. Waiting to see if the drugs take effect and Josh starts to improve. Waiting for blood tests and other results to come back to give us more information. There’s nothing the doctors can do to hurry things along, so it’s just a matter of sitting in the room and doing what you can. He’s on more drugs than ever, as you’d expect. At last count there’s at least 40 going down his tube a day along with 6 or 7 infusions and TPN down his Hickman line. If you’re new to the blog, much of what I write will come across as complete gobbledegook, but it’s all been explained here at some point. Maybe I should start a glossary for new readers. The doctors don’t have much to report today. On closer inspection, they have spotted a tiny area of ‘ enhancement’ in the white matter of his brain on the latest MRI although nobody knows what it is, They’re not too worried (they never are ) but it doesn’t fit the pattern of any of the viruses he has, nor the possible fungus they may have detected. Shorty after they leave, the physios arrive to put Josh through his paces. They work on his limbs and we try and sit him up on the bed, supported, for a short time. He manages it, but only for a few minutes. The nurses were on standby with scales as he hasn’t been weighed we arrived and many of the drug doses are calculated by weight. It’s not a huge problem. Historically, they’ve never had an uo to sate been kept up-to-date.. The rest of the day drags with nothing much really happening. One of the nurses volunteers to sit with Josh for 30 minutes ich gives me time to fill up my squash bottle, collect clean sheets and nip to Tesco for supplies. Yep, I’m out of mini-mini rolls already. When I return, Josh wakes up and I spend the next hour reading a couple of Beast Quest books to him. They’re exactly what the title suggests and he seems to take everything in, although I have to read very loudly to be heard over his oxygen. We are cutting down on his fluid intake at the moment so I’m using the pink, sponge lollys soaked in water to satisfy his thirst rather than letting him drink. Coincidentally, they just fit through the holes in his oxygen mask so I can poke them through to wipe his dry, cracked lips without lifting the mask. It’s a tricky operation – a little like trying to hand feed a hamster through the bars of its cage. To help with his still rising blood pressure, they are giving him a drug that makes him wee a lot, so we’re probably in for a busy night.
Friday 23rd July
Not a bad night as it happens. Super Nurse Katie is on duty and manages to arrive seconds before the alarms start bleeping at the end of each infusion. She also changes Josh several times on her own. At around 6am though, his heart rate starts to rise and his breathing becomes faster and more labored. For more than an hour his heart rate is hovering between 180 and 255 beats per minute. He doesn’t appear to be in pain and his blood pressure’s under control, so it’s difficult to know why. He saves the biggest poo of the night for me and I have to change him and the sheets without his heart rate shooting up any higher. It’s like playing the board game ‘Operation’ for real as I try to roll him around the bed, lift him and slide clean sheets under his body without a buzzer sounding. Having had an oxygen mask on for so long his lips are now dry and cracked. I swap the masks over and see what happens if I turn the level up but leave it on the pillow to waft towards him. It’s okay for a while and I spend the next hour wiping his lips, moisturizing his dry skin and applying steroid cream to his rash, He wakes up while I’m doing this and appears more responsive than yesterday, My jaw almost hits the floor when, out of desperation probably, he asks if he can have some water. It’s so wonderful to hear his voice again and I duly oblige. We’re now using iced water lollies to refresh his mouth which he sucks on for minutes at a time. The physio team arrives but don’t push him too hard because of his heart rate. By the time Claire arrives it’s dropped and he’s sitting up listening to his new’ Now That’s What I call Music 76’ CD. He’s definitely looking brighter and even manages to say a feeble ‘ Hello’ to her, which nearly brings tears to her eyes. Claire looks great as usual, not sure how she manages it – especially when she was ironing until 1.30am this morning. She sits down on the bed and just as I’m about to start updating her on the last few days, we’re interrupted by one of the resident African cleaners. Nora is the best cleaner we’ve ever seen on the ward, any ward come to think of it. She scrubs, wipes and disinfects every inch of Josh’s room and bed as if his life depended on it – which in reality it actually does. The only trouble is, she has the worst B.O of anybody I’ve ever met, which means no matter how hard and long she scrubs, she leaves the room smelling far dirtier than it ever did before. I hang on for the doctors round before leaving. The top consultant, Paul Veys, arrives at around 1pm with 4 other doctors. They think Josh’s reliance on oxygen and high pulse are down to inflammation in his lungs again and that his new system is attacking them just like his old one did. He knows we won’t like the answer, which is Steroids, as along with the Ciclosporin they are looking to reintroduce, there are huge risks involved. Josh’s immune system is virtually non-existent as it is and both these drugs will suppress it even more – leaving him very susceptible to a potentially catastrophic attack from the-virus-that-cannot-be-named in his brain. It’s such a careful balancing act. Everything they do to help one aspect of his health endangers another. We can only hope they get it right. As soon as they leave, so do I. There are no trains on the central line due to an unspecified problem and I’m left standing on the crowded platform for 25 minutes listening to announcements that tell me there is a good service on all underground lines. Yeah, right. By the time I’m home it’s straight to school to pick Joseph up before heading to Carphone Warehouse, as the trackball on my Blackberry won’t move which means my phone is completely useless. People often say their phone is their life, which I find laughable, but when you spend your life trapped in a hospital in Central London it’s true. The staff are helpful and sympathetic, but repairs could take up to 28 days so the only viable solution is to upgrade the phone. The latest model is a bit sexier and more compact, but has a smaller screen which is a shame as my eyes aren’t getting any younger. I have to sign up to a long contract to get the best deal and a free phone. I get more minutes and texts for the same price but it buggers my plan of switching to an iPhone for another 2 years. Claire updates me on it after Joseph’s in bed. There’s nothing much to report thankfully. I then spend the next 3 hours trying to transfer all my contact numbers over to the new phone and roll into bed next to Joseph just after midnight.
Saturday 24th July
A full-on day with Joseph is a good cure for just about any kind of blues and by the time he’s in bed I’m exhausted, but in a good way. The sun shone for most of the day and in between playing football in the garden, going for a walk in the park and swimming for an hour and a half, we watch his favourite programme The Deadly 60 - a CBBC wildlife show about the world’s 60 most deadly creatures. This week it was black bears and skunks - whose stench alone, we’re told, can turn the strongest stomachs. Next week they’re covering Nora and her B.O for all I know. Joseph breaking up for the summer holidays is great but it makes our changeovers really difficult. Normally he’s at school when we switch, so it’s no problem. If we’re delayed one of the mums picks him up and takes him back to their house until we’re home. Just about everyone we know is going away on holiday for the next few weeks. Claire’s managed to get someone to take him tomorrow, but the rest of the week is tricky. Claire’s sister has kindly volunteered and we know we can leave him at Claire’s mum and dad’s for a couple of hours too. They’re all great with him, but he’d obviously prefer a few hours with one of his many girlfriends given the choice ! Whichever one of us is home all day will struggle to get anything done , even though he’s so undemanding. Certainly any hope of going to the gym at all over the next two months or so seems faint. Bang goes my fitness plan. Claire’s evening dance and exercise classes also bit the dust when Josh went back into hospital, but it’s not the little things like that which get us down - it’s about never being together as a family. That’s what we’ve really missed most over the last few years. Not having holidays, or days out or popping into restaurant s on the spur of the moment is something you get used to, but not being together is soul destroying. It’s been bad enough for the last 4 years or so, but since September 2009 we’ve really haven’t done anything as a family. Someone always has to be with Josh and Josh can’t be anywhere there are people. Joseph’s sports day was the only exception I can think of as it was outdoors and a nice day, but even then I had to wheel him home once he’d seen Joseph win his race because he was so tired. Oh, and I think we all managed to cross the park to the newsagents once in April although Josh had to wait outside with Claire while I went inside to check out which football cards they sold. Claire and I have been apart for more than 20 days so far this time. Nothing compared to our longest stint of 8 months, but long enough for it to seem normal again. Joseph has had another 20 days of never knowing who’ll pick him up from school or be lying in bed when he trots in every morning and poor Joshie can have no idea whatsoever of how much time has passed. His birthday cards are still up in the house. Presents are piled up in his room unopened and all he knows is confusion, constant noise, discomfort and pain. His case remains so complex that the consultants are constantly mystified. A few weeks ago we were worrying about Josh’s schooling, but at least looking forward to summer in the garden together. Now we have to stare out of the window at blue skies over Great Ormond Street all day and would give anything to have Josh speak or be able to communicate with us. Forget bloody schooling, he can play Playstation all day for a year for all we care, we just want him back. We miss him so much – even when we’re with him. Joseph is zonked after swimming. Claire calls to let me know Josh’s GVHD is itching again and driving him mad and he’s now having Piriton every 4 hours . He’s been awake most of the day though and spoken a few more words including a ‘thank you’ an hour after been given IV Paracetamol and oral morphine for his blinding headaches, which are back. He was finally weighed today using a complex hoist system that looks like something they use on animal rescue programmes to get giraffes back on their feet. Claire will brief me on using it tomorrow and there’s a picture on the left somewhere of him in it looking very relaxed and casual. I used to look forward to going back to GOSH after being home for a few days, as Josh is such good company and we always had a laugh no matter how bad things got. Things are very different now and I dread going back. I know Claire feels the same, but what else do you do ? In the meantime, where’s the ironing board, there’s work to be done…
