Tuesday, 29 May 2012
May 29th - 2 weeks in!
Well I am doing my stint at LGI again! We are trying to do 3 nights in, 3 nights at home. Then at least you feel you have been home. That's not to say we don't visit Harry when at home, but it's nice if we can have one day at home and not darken the doors of LGI! On Sunday I enjoyed a whole day with Callum. On Saturday he was more contrary than usual. This was because I feel it was his way of saying where have you been mummy, how dare you leave me. On Sunday he had thawed out and we had some fun. I took him swimming in otley, where he again spent most of his time not swimming! Mostly on the side of the pool filling watering cans up and pretending to be fireman Sam, the long snake like floats being his hose of course! However, I did persuade him to venture in the pool a bit and and he actually 'swam' a bit. By this I mean kicked his legs and waved his arms about enough so I did not need to support him, so progress albeit slow. I guess I should have taken him swimming when he was weeks old and he'd be a water baby by now. The truth is the thought back then of taking Harry and Callum swimming was not one that filled me with joy! So after swimming we met friends in menston park for a picnic lunch and then went to see more friends down the road later in the afternoon. James had his paddling pool out. Callum was reticent at first, but eventually joined in, although not for long. He was too busy being the joker and teasing other's but running around the garden when anyone suggested getting him back! Monday was a day of 2 lives! Being mummy to Callum and taking him round Golden acre park with his friend Fin and mummy, Kate. Out in the hot sunshine, enjoying the summer (well technically not summer till June 21st, but this is probably it weather wise!). Then heading towards LGI for the afternoon, whilst Callum happily went to Fin's house till daddy picked him up. Though whilst, grandma visited, paul and I had a cheeky drink sat outside weatherspoons! But then the rest of the day was spent within the enclosures of LGI, ward 32, bed 3! Oh yes we moved beds last Friday, from bed 1 to bed 3 as there was a crack in the ceiling! Felt like moving house, which I said I wouldn't do for a long, long time! Just as you thought you had everything there was another draw full of stuff! Daft thing is the maintenance man came along as vacating the room, smudged some poly filler on the crack and the room had a new resident by lunch time! I guess I didn't have any other plans that morning, so passed the time! So onto Harry! Yep, from having some bursts of energy over the weekend and still being too much for the staff on this ward, he is 'that very poorly patient the staff here are used to dealing with'. His scores on the doors dropped drastically on Monday and he became Neutropenic overnight. His scores have been dropping, but seemed to stay around a respectable 3 for his neutrophils, on Sunday they were just above 1, so not Neutropenic. However, Monday they dropped to 0.11 and today they have bottomed out to 0.03. He has been at this score before. The difference before was that this was just the impact of chemo on him. This time it is the impact of a much higher dose of chemo and his body with his stem cells having been infused, trying to re establish a new bone marrow. Therefore his body is working really hard and the effects of this mean it will take longer for his neutrophils to return to a satisfactory level. On Monday night Harry spiked a temperature. This was to be expected and he is now on intravenous antibiotics. It could be that his own bacteria caused the infection, thus creating a temperature. His immune system is so low now, that it does not take much for this to happen. He is not drinking much so is on intravenous fluid and since he was vomiting a lot and his gut could not tolerate his feed anymore via his NG tube, he is currently being fed intravenously too! So lots of medicines going into him = lots of frequent beeps from machines! He has commenced a different anti sickness drug, which makes him very sleepy. He has been wiped out today and we have not had one smile out of him and hardly a word. Even when his favourite nurse visited, he could not even summon a wave for her. Last week he was as giddy as a kipper when she visited. It just shows how poorly he feels. A very far cry from Harry only a couple of days ago, whom was very noisy and chirpy. It's hard to witness him being so lifeless. We don't know how long he will be like this either. We just have to hope and pray that he does not get a string of infections that keep him at rock bottom. He was starting with a cold tonight and so we don't want this to go to his chest. He is losing weight and can hardly stand up. Hopefully though, the intravenous feed can sustain his weight now. So 'the only way is up', which I think is a song by Yazz! We need everyone's prayers that Harry can bounce back and be that boy again pretending to be an aeroplane, shouting as loud as he can down the corridors of LGI and preferably back in our own home!