The week before Christmas Kaycee started to get worse and during the course of the week her oxygen kept going up. The doctors just kept saying that the virus that she has is a nasty one and that she will ride it out. We couldn’t believe what we were hearing. This was the same baby that to them has no reserve, she has none to pick herself up and recover without the aid of machines. We were so angry as for weeks we had been saying she isn’t well, please can something be done.
During the nights Kaycee’s saturations were dipping, because she sleeps with her mouth shut and because her nose was blocked she wasn’t receiving enough oxygen and the only way to make her saturate better was to poke her or move her onto her other side. This obviously wasn’t a suitable way to treat a baby and it was tiring for me never mind poor Kaycee. I was getting so upset with the nursing staff at the night time and really getting to the point of snapping.
Christmas Eve was the worse night I have ever had with Kaycee. All night she was very unsettled. Kaycee never cries and I mean never. Only if something is really really bothering her and obviously if she isn’t receiving enough oxygen she goes mad as this is the only way of her telling us … HELP!!!
Christmas Day morning came and I was shattered. I didn’t want it to be Christmas as this was not how we had planned to celebrating the same. Kaycee’s doctor came in and we told her about the bad night and she didn’t seem too concerned. She said that we might have to just accept lower saturations whilst she isn’t the best. I wasn’t reluctant to accept this but she was the doctor. During the course of the day Kaycee started to get worse. Michael’s parents came and we tried to have a bit of a Christmas Day unwrapping presents and having a bit of a dinner. Kaycee still wasn’t the best so we called the nurses to call the doctor. This time we demanded something got done about it because we were all too familiar with the visits to PICU.
It took several hours for the doctors to realise that Kaycee wasn’t getting any better but in fact worse. They decided to take bloods and the usual stuff they normally do. Everything was stable, but obviously looking at Kaycee clinically she didn’t look stable. Again the doctors just said let’s just “sit on her” … We couldn’t believe what we were hearing. We wanted to scream at them. We knew she needed moving from a ward to High Dependency.
Later that evening things went from bad to worse Kaycee had a bath and seemed ok(ish) and we put her in bed usual routine. She went sleep and then all of a sudden her saturations dropped to the 50’s. That was the final straw. Michael snapped. PICU doctors were called as Kaycee was too unstable for the ward. Which was obvious to us 2 weeks ago. We were so angry by this and scared at the same time because we could see that Kaycee would need a vent again just to get herself back to how she was.
Up came the doctor and told us that Kaycee was being transferred to PICU and they will assess her down there. By this point Kaycee was in a bad way and the doctor needed to “bag her” (support her by hand) all the way down to PICU. On arriving at PICU she was placed on the cpap. She couldn’t cope on that and ended up on Bipap which gives you breathes. If she couldn’t do this then she would need the vent. The consultant that evening knew Kaycee well and just decided to give her the benefit of the doubt. She wanted to make sure she was comfortable so she gave her medicine to sleep and extra diuretics to make her lungs less wet so she wasn’t fighting a massive battle to clear infection and water retention.
24 hours later Kaycee was discharged to HDU. This was a relief because it meant that she didn’t need the vent for extra support.
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