25/2/08 Skyla had a few episodes of desats throughout the night, but had a pretty good day today. One desat this morning at about 10am and thats it. Mind due it was a big one. Her sats read 48% but it was probably more in the 50% mark. Her lips were definately blue. It lasted about 25min. They did bloods today and her Hb was 7.8, so tonight she will be having a blood transfusion. Her 6th one i think. We had visits today from play therapy, they bought her in a tiny maracca. She shook it a bit. She didnt want to let go of it. It was funny. We also had visits from the physio people. We are trying to get her to face to the right as her head is pretty flat on the left side, but she just makes her way back to the left. Cheeky girl she is. She also had an echo on her heart today. Because of her VSD the blood is shunting a bit which doesnt really help her desaturations that she has. I come home tonight so hopefully she will have a great night. Her gastrostomy tube was leaking a bit today so they stopped her feeds all day until the surgeon came round. He tightened it a bit then the feeds were started again. Only at 5ml p/hr. They will up it every 4hrs. Oh forgot, we weighed her today and she now weighs in at 3.83kg. But because of the gastrostomy she is probably about 3.7kg and she is 53.5cm long. My son Blake was 3.7kg born and 52cm long. So by that Skyla is still the size of a newborn at 4 1/2 mths old. She is getting there, slowly but surely.
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