A bit brighter today

That title goes for both Harrison and the weather. Yesterday was torrential rain, thunder and lightning. The amount of surface water in the streets came a very close second to my efforts on our bathroom floor! Today it has been really warm, anyone would think that it was summer! I dutifully arrived at Harrison's bedside at 8am for the nurses handover from the night shift to day shift. Usually at this time Harrison is awake and waiting for me. Today, he didn't wake until 9:30am. Still, he definitely benefitted from the extra couple of hours sleep as throughout the day he's been a lot more awake than previous days. Overnight he spiked a couple more temperatures but throughout the day he's been ok (although he looked and felt a bit iffy a couple of times). The night nurse also had to put Harrison onto 5 litres of oxygen through his BIPAP as he kept desaturating. He's been fine all day in air and hasn't used his NIPPY at all today. He's very tired now so I'm hoping he'll go to sleep quite early tonight. Last night he let me leave him whilst he was still awake (distracted with the PS2) so that I could walk back to the room before it got too dark. I'm pushing my luck a bit by hoping that I can do the same again, but you never know..... We were honoured with both the cardiology and respiratory ward rounds this morning. Cardiac wise he's still stable and they're very happy with him. Eating still a BIG problem - 1/2 sausage for breakfast, 6 chicken nuggets for lunch (mid afternoon) and 5 very small meatballs for dinner with a couple of potato wedges. I suppose the only positive is that they all punch above their weight where calories are concerned. It was worth the wait for the respiratory team. Harrison has now developed a chesty cough to keep everyone on their toes. The second sleep study showed that the pressures on the NIPPY machine are still not sufficient. The have been increased again for tonight in preparation for the third sleep study on Monday night. However, if he's still got the cough they may have to do the sleep study another time as the cough could affect the results. This is all getting a bit monotonous now...... The respiratory doctors have also ordered another couple of tests. Firstly, they want lung function tests where Harrison has to blow into a tube when he is standing up and again when he is lying down. He will have to wear a nasal clip to prevent the air escaping from his nose due to the shape of his palate (one symptom of 22q11 deletion). The other test has an alphanumeric name which I can't remember, but it is to check for a rare genetic condition which causes apnoeas. I had previously thought that they were another symptom of 22q11 deletion but not necessarily. The consultant was very nice and it sounds as though they are going to get things sorted before we leave. All very nice, but I hope it doesn't take too many more days. Bernard is still at home - has a cold, so banned from the ward until he's recovered. The house should be immaculate by the time Harrison and I return ;-) Think that's about it, but if I remember anything else, I'll add it in later. Apologies, no photos until Bernard comes back with his phone. Although mine has a camera on it, the memory stick is in my proper digital camera which is at home.