Ethans story was first run last year...sadly Ethan passed this year just short of his 4th birthday....this is his continued story as told by his mummy nicky x Still Ethan fought on. Just as I thought it could not get any worse Ethan developed a blood infection. It was the same type of infection that Ethan had been collonised in his lungs with since I guess birth. A horrid one called pseudomonas. It was not the news I wanted t hear but the doctors straight away put him on antibiotics and he started to respond. His oxygen requirement was still going up and down and he needed bagging daily which was horrible to see on a child who was not so heavily sedated. He hated the CPAP mask so much. I was called in for another discussion. I already knew Ethan would not be ventilated again. This time the doctors felt if we took him off CPAP or any other agreesive treatment then we should not go back to it. They also felt Ethan was needing more and more bagging each day, he was coughing up blood (perhaps from the bagging as well as sore lungs) and he was so distressed with the mask. They prepared me for the worst once again. It was a conversation that I had already pre-empted. Which to be honest I did with each discussion they had with me. Then one afternoon I was with Ethan when his blood pressure went up so high, he was struggling and causing his SATS to dip very low. He was pulling at the mask and crying, it was heartbreaking to watch. The doctor looked at me and said Shall we take the CPAP off. I nodded and was rooted to the floor with sickening worry. The Doctor looked at me and said Nicola, I am so sorry but I have to hear you hear say the words. I looked at the Dr and said Take take the CPAP mask off. The Doctor then said You understand, that as agreed, if I do we can not put the mask on. I replied with a heavy heart feeling like I had just signed Ethans death certificate I understand, please take the CPAP mask off now. Then the mask was off and once again Ethan was on high flow (optiflow) oxygen set at the highest rate it could go up to (25 litres) and Ethan................ calmed down. My whole body sagged with relief. I knew we still had a struggle and Ethan could deteriate but he hadnt died straight away. He would live another day, and I would have another day with him.
Posted on: Sat, 02 Nov 2013 08:17:13 +0000
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