A bit NIPPY.. and a rant...

B again.... Harrison completed his sleep study this morning. The results are that Harrison's breathing function overnight is relatively poor, probably due to his diaphgram becoming less mobile as a result of his surgery. He is having to work far harder to breathe as a consequence. It is not permanent; the phrenic nerves to the left and right sides of the diaphragm pass over the heart and are easily bruised by surgery (especially if it's of ten hours duration, your right lung was moved out of the chest cavity, and you had to have the major part of the surgery repeated). However, recovery can take months. Meanwhile, for now Harrison will not be able to exert himself as fully as before, though when the diaphragm does recover normal function he will then experience the full benefit of the cardiac surgery. In the great scheme of things, this is an inconvenient setback, but ultimately worthwhile. His breathing during daytime is also similarly affected by requiring more effort until recovery. Thus, the BIPAP NIPPY machine Harrison's been using in the hospital has been replaced by a near-identical version, with marginally less sensitivity, to be taken home on discharge. Lindsey and I were trained on it this morning, and have been provided a natty new facemask and filters. Lindsey joked that we could save money by using filters from the Dyson.... Harrison doesn't like the "new" smell of the mask... The machine may also have an equally important role when the diaphragm recovers in aiding Harrison periodically when he's really tired. It's believed he's been experiencing apnoea during sleep, and so wakes tired. The BIPAP machine will breathe for him during these apnoea episodes, and will help his breathing generally, so he should generally benefit from being less tired. Otherwise, Harrison's lost more weight and is now 30.3kg. He's started the Calogen and been given vouchers for the restaurant so that he does not need to eat so early for his evening meal. He's now also allowed extra items from the menus on the ward. We took Harrison back to our room today for a 'proper' bath and hair wash. Up until now, he had been having bed baths, which served their purpose but are rather clinical. As our room is a five minute walk away from the hospital, Harrison put his jeans on for the first time in two weeks and rode out in his chair. They really illustrated how much weight he has lost - you could virtually fit two of him in them! Undoubtedly these events have complicated Harrison's recovery. Harrison will be having another sleep study on Thursday night to validate the new settings for Harrison's BIPAP machine prior to eventual discharge. As I (Lindsey) came back into the room earlier, this was the scene that greeted me:

Unfortunately afterwards one of the parents of the recent child admissions to the HDU bay had to bring her elder son onto the bay this evening although he was experiencing coughing fits. The mother and her elder son - school age - have had their temperatures taken; the elder son was subsequently barred from the ward and the younger son who is admitted is being barrier nursed on the bay, and it looks like they will be moved (hopefully we think) into a cubicle. This is obviously worrying on two fronts: firstly, the obvious concern about infection transmission onto Harrison and the two other serious heart cases on the bay, indeed the ward and the whole hospital, and secondly that said parent may have had no option due to their circumstances but to bring someone with an infection onto a children's ward dealing with cardiac and cystic fibrosis cases during an influenza pandemic.

Sorry for the lateness of tonight's post. Lindsey's been cleaning all the surfaces in and around Harrison's bedspace while I've taken him back to our room again to clean his teeth etc.