What an horrible day… Since morning I had falls of saturation. Doctors had to do a heart massage because my little heart slowed, what is very dangerous. I couldn’t recover at very high respirator parameters. I was given a lot of medicines for heart and lungs. My doctor said that a day may come when they won’t be able to rescue me. All day I wasn’t fine. I was given a lot of sedatives. I looked very bad. My mum read has that some of my medicines causes difficulties in breathing and apneas, so why I receive it??? In the evening I had better saturation but the numbers on respirator were still high (100% of Oxygen, 70 breaths, pressure – 30). I wonder if they will make them lower soon? Will they give me a chance to breathe. Here, in Lodz, they don’t know how to help my lungs, so I could breathe on my own. I think we must look for a specialist who treats lungs of children mechanically ventilated for a long time.
Will I ever breathe on my own? Will I be able to wear dresses and play like other children? Eat normally, not by a catheter? Now I cannot even move because as I do that saturation decreases. This is why they give me this stupid sedating drugs all the time.
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