Tuesday came and went without too much happening. Had to wake Josh at 11am as the physiotherapists have been asked to carry out a couple of tests to compare his breathing and fitness before and after his steroids dose is upped. I point out that his dose actually increased overnight, so it will be difficult to gauge but nobody seems concerned. I ask them to check his SATS first given that he’s only just come off oxygen and physical exercise might not be the best idea. Once they’ve done this, I wheel him to the lift and we head for a corridor two floors below where a course has been marked out. The exercise is a 6 minute walk where Josh has to walk at a brisk steady pace for 6 minutes or until he’s too breathless to continue. One physio walks with him and places post-it notes on the floor every minute when the other calls out the time. I’m asked to shout out encouragement from the sidelines like a supportive dad at a school football match. He does incredibly well, although I’m quite breathless from yelling long before time’s up. They don’t check his SATS afterwards which surprises me but I’m told checking his pulse is enough. The test will be repeated on Thursday morning, which presumably means we won’t be going home tomorrow. The rest of the day is taken up with a spot of maths, his school teacher arriving and a session with the play specialist. I dodge the rain and make a dash to Sam’s Chinese diner, which is actually more authentic than it sounds. The ward round is late and we miss it, but one of the consultants pops his head round late afternoon. There is no evidence of infection in Josh’s lungs, so they are looking to stop his IV antibiotics. Chances are his breathing difficulties are as a result of inflammation again and that the steroids will kick it into touch. I ask if we can expect this to keep happening until his immune system is up to full strength and am told that it’s possible, We should be transferred back to our infected local hospital or home Thursday afternoon at the earliest depending on Josh’s reliance on oxygen. The dietician pops her dizzy little head round the door soon after to see how we’re getting on. She is more willing than able and asks how Josh’s eating is going. Just as I’m explaining how awful the food is, his dinner arrives on a tray and we peel off the foil together. Having not read what supposed to be on the plate, the dietician takes a few moments to try and identify it but is still unsure. I’m shocked to hear that this is the first time she has ever seen a meal from the GOSH kitchen that she has prescribed for a patient. Suffice to say it did not live up to her expectations or the exotic description and she did turn quite pale. After a bath and a movie, Josh and I lay in bed in the dark chatting for nearly two hours about anything and everything from superheroes to losing Alex and his own hopes and dreams for the future. Without going into any detail, there are some things he talked about that are unlikely to ever happen as a result of his treatment and I lay awake with tears rolling down my cheeks for several hours after he’s finally drifted off.
Wednesday brings a dilemma, as not knowing when we’re going home means it’s difficult to know when Claire and I should swap over. The car’s gone in for its MOT today and Claire reads at school in the afternoon. I’m finding it hard to work in here at the moment as there are too many distractions and I’m starting to fall behind. Claire needs to be home Friday night as she’s had something arranged for a few weeks. We decide the best plan is for me to remain here until Saturday unless we’re home before that. Hopefully I have enough clean clothes. The doctors seem to think we’ll be home earlier, but we’ve gave up chicken counting a long time ago. Josh’s long lie-in lets me catch up on work and finally stirs just before his teacher arrives. He was on oxygen again last night but nobody’s quite sure why as his SATS never dropped below 94. When the doctors do their rounds, they confirm that he shouldn’t go on oxygen unless he dips below 90. If he’s oxygen free tonight then there’s a good chance we’ll be home tomorrow evening. When I ask if he’s been cleared for Norovirus yet, the doctors look puzzled. After a quick check on the computer they tell us that no samples have been sent off for tests. So, a week after coming in, he is still confined to his room for no reason other than an oversight. This is very frustrating for Josh, especially as his favourite nurse is on duty today and he can’t leave the room to give her bum a good smacking. Actually, maybe that’s why they didn’t send his stool sample off – to stop him roaming the corridors whacking nurses bottoms again. Maybe the whole Norovirus story was a scam to keep Josh locked up during his stay ? I love a good conspiracy theory. As soon as Josh’s teacher arrives, I rush off for a lunch that’s masquerading as a meeting, or is it a meeting masquerading as lunch ? Either way, it’s a welcome break and I return fed, watered and refreshed. Josh’s lunch was edible today and he ate most of it. The only trouble is, his dinner usually arrives just 3 hours afterwards which is far too early and he’s never hungry enough to even pick up a knife and fork. He’s had a tiring day today, throwing and catching a ball with the play specialist for a good 30 minutes while I was out, and is fast asleep the moment the end credits of our nightly movie have rolled. Tonight’s showing was ‘Wolverine’ – we’ve been having a bit of a superhero season up here. Luckily I’m awake when a nurse arrives with his antibiotic but no Piriton again and I manage to stop her giving it just in time. Whilst his allergy is written in his notes and on his wristband, the computer has no record of it whatsoever, which is why it keeps happening. I’d love to blame technology, but you can hardly point the finger at a machine for not showing information that hasn’t been keyed in, can you ?
Thursday and we’re hoping to head home. While Josh sleeps I try to set the wheels in motion for our exit. Organizing transport is the first tricky area as having no idea when we’re leaving makes it impossible to book a car. If we’re returning to our plague-ridden local, then we’re entitled to an ambulance or ambulance car as it’s a transfer. If we’re heading directly home, it’s a much woollier area and we may have to organize and pay this ourselves. It’s difficult to do this as Josh is immuno-suppressed. Get a cab driver with a runny nose and we’ll be straight back in hospital. I leave it with the nurses to get back to me. The other thing that needs sorting is Joshua’s drugs. Whilst we probably have more in our cellar than they do in the hospital pharmacy, Josh is on a couple of new ones and we’ll need those before we can leave. Finally I need to know when Josh’s next 6 minute physio session is scheduled so I can wake him in plenty of time – whether we go home or not depends on his performance today. As it happens, Josh is up early and raring to go. The doctor on duty tells me she needs Josh’s oxygen levels checked straight after his session which makes sense, but this wasn’t done last time so I’m not sure how they can make a comparison. They don’t tell the physiotherapists this news unfortunately, so we’ve already left the ward before I bring it up. They’re reluctant to do it, but orders is orders and I run back to the ward to grab a SATS machine to drag along to our session. Although it’s fully charged, it has a faulty battery and conks out after 10 seconds. The physiotherapists have lost their stopwatch and borrow my Blackberry to time Josh, who does really well. We check his levels back on the ward and all appears to be good. We both read while we wait for news from the front. Lunch arrives. It looks and tastes like salmon and Josh eats most of it. His teacher arrives and still we have heard nothing. It’s only around 3pm that we’re told we can go home. The nurses book a car for 4-30pm. I go through the drug list with the pharmacist and tell her what we don’t have at home. She manages to rush through an order as there are only a couple of meds we need. Everything is going to plan all of a sudden. The discharge process is smooth and quick. Our car arrives on time and we stagger down with our bags. The driver lives in Bickley and is overjoyed to be heading out that way on his last fare of the day. Josh spends the journey talking about football with us both and the time flies. Josh put in his order for his dinner to Claire before we left and as we walk through the door he can smell the bolognaise sauce and his face lights up. Whilst the boys eat, I unpack and sit down to put together a new drugs chart for Josh. Some of the measurements are in mg for tablets but we have liquids, so Claire and I have to sit down with a calculator to work out the dose. Joseph asks me to bath him and out him to bed – it feels like a long time since I’ve done this but it’s only been 4 days. Josh insists on staying up to watch the live Everton match. It doesn’t end well but he cares far less than I do and toddles off to bed tired and happy. I have propped up his mattress so he’s as elevated here as he was in hospital. He’s asleep in no time. Claire goes to bed shortly after. I watch TV for an hour or so until it’s time to do his meds and top up his feed. It feels like we’ve never been away already. A hot bath beckons and I’m in bed before midnight. However much I con myself into thinking my hospital bed is comfortable, it’s heaven to have a springy mattress, fluffy pillows, soft sheets and a duvet again. Sleep has never felt so good.
Hospital Dad will hopefully only be returning with good news updates from time to time. Bye for now.
