A time for some criticism came… Unfortunately there are some things that we don’t like, but what we experienced yesterday and today was just too much. After reanimation of Mary doctor repeated a couple of times that we must be aware that one day they won’t be able to rescue her and that such critical moments aren’t good for her health. But we are well aware of it… We know that every day of her life may be the last one… The doctor didn’t like the fact that we weren’t moved very much by her words. But if we would worry very much about everything we wouldn’t manage it. What is more it seems to us that she has enough of our questions about respirator’s work and other things – we read a lot and have a lot of doubts. Eventually we were invited for a conversation with Ward Head. It is easier to work with parents that don’t care to much… The ward head explained us again that Mary is in a very serious state and can die…
But the most important was today. One doctor in the morning told us that cardiologist who helped us to go to Lodz wants to speak with us. The subject of this conversation was similar – the doctors from intensive care unit complained about us to her! We explained again that we know how serious the situation is, that we are neither naive nor stupid, but as parents we cannot just watch and do nothing to help our child. The doctor is a very warm and competent person. She said that if in future Mary will have to be examined again, they will do that. After returning to the ward the doctor – pretending not to know - asked us why we were summoned for the conversations with the cardiologist… He asked also whether they should rescue Mary when the reanimation will be long… He said about trust, but how we could trust a person who after examination a child that has saturation 95% and a very good gasometry doesn’t decrease respirator parameters. After we pushed on him, he made additional gasometry and decreased oxygen and breathes of 3%. It is ridiculous. We couldn’t stand this so we change it of 8% more. It has no influence on saturation, what was easy to predict.
Unfortunately the doctors don’t believe us and instead of decreasing respirator parameters when Mary has better days, they hold her on very high making it impossible for her to get off the machine. The oxygen is very toxic at such high levels… Despite of all of this our daughter was very active today. For few hours she didn’t sleep, but watch around curiously and listen to the music from a music box. She was waving her hands and clenching her little palms on our fingers…
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