The nurses were also very on edge, so after a few lovely settled nights with minimal disturbances, Dylan was put back on proper hourly observations. Well this was not fun at all I can tell you! A certain little person woke up every single hour (a nurse standing over you with a torch counting your breathing will do that I guess) then proceeded to mess around each time and barely get back to sleep before the next set of observations were due! At 2am the little monkey was even demanding I get into his bed with him but then straight told me to "get out" within 10 minutes. He kept asking for his DVD player on and to play games.. mummy was not amused at all.
Still.. I'd rather 2am silliness and giggles with sats of 100% than being back in PICU having a new chest drain in the early hours of the morning so it was a sleepless night for all the right reasons.
His withdrawals have become slightly more apparent.. He has finished his Oramorph and Diazepam now and is in the process of having the Clonidine weaned off, he was on 8mg last week and is now down to 3.5mg with it due to finish completely on the 26th. He has handled it fairly well but has been more shaky and had a slightly raised heart rate at points. I don't also imagine it helped his sleep pattern much either but it needs to be weaned down and stopped eventually.
Aside from that he has been fab! He has regained all the weight (and more) that he lost whilst intubated. His upper body strength is getting there now with him managing to feed himself and play on his games. He is really struggling with standing and is very fearful and shaky so that may take a lot of time to work on but I have nothing but time for that beautiful boy!!
Hoping for a smooth and stable weekend so we can focus on his birthday preparations..
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