17/2/08 What a bad week my little girl has had. Over the last week she has had 27 episodes of reflux and desats. They range from 10min to hours at a time. Most desats are in the 60s and 70% sats. Her worst one was 49% sats. We had to bag her to get her up. It was horrible. She was blue. They tried to then put her back on cpap but as they would take the bag away and try to put cpap on she would desat to the 50% sats. Twice she did this. It was very scary. This particular episode lasted for 1hr 35min. We ended up just giving her the blowover of oxygen until she settled. Thank god they didnt put her back on cpap. She absolutly hates it. It would have made her so much worse. The plan is fundoplication, gastrostomy, LBO and toungue tie operation on tuesday 19th feb. Only two more days and then hopefully my little girl will be on her way to getting her home for the first time. I just hope she doesnt have too many more episodes. She had 7 today. She gets so exhausted. She now weighs in at 3.58kg. She is slowly getting up there. We are now day 126 in hospital. 105 of them in ICU.
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