Niamh had a relatively good night (although lots of weeing due to all the fluids).
She has been very happy to see her big sister who was enjoying making her laugh.
A few rounds in the car again. At 2pm she was given the first dose of rescue drug. They will give her a dose every 6 hours till they are happy that the toxic level in her blood has gone down to a safe level.
Around 5pm, her nasogastric tube came out by accident. It was due to be replaced next week (every 4 weeks) so not so bad. Interestingly Niamh was more distressed with the plaster on her cheek to hold it in place than by the positioning of the tube.
Over the last few weeks, she has developed a phobia of anything that sticks to her skin.
Niamh is being fed through a nasogastric tube since her first surgery. The speech and language team are trying to assess her swallowing but she doesn't seem interested in trying. Not easy to convince a stubborn 2 year old. So far she has successfully coped with chocolate buttons! Her bottom lip and tongue have become weaker since the second surgery. A concern to us but the consultants seem to say that it will come back with time.
Niamh never tries to pull the tube out and never touches her central line which is fantastic. When the nurses come and do their obs, she gives them her arm for the blood pressure, her finger for the oxygen level and even her ear for her temperature. She is so sweet. It does make life much easier but it is so sad at the same time.
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