It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Friday, 9 April 2010

Out of bed!

He was up and out of bed again today, here's the proof! Captopril to be increased and melranone weaned. Still on the pavolex for his liver. Still got the line in his neck to take bloods, they will need to take that out sunday at the latest. drains still draining but is reducing. Slow and sure he is getting there. Spoke to his respiritory consultant today. He wants to see ethan in a few months and if he still thinks he is aspirating then they would be looking to stop all oral feeds. This is such a blow. Mainly because we worked so hard to get his ng tube out, if they'd have wanted a peg then it wouldn't have been so bad. But to see this child who has come so far put back would really be ashame. So we are keeping our fingers crossed. Love to all x

1 comment:

  1. Glad that Ethan continues doing well. Hope they get things figured out with his feeding. That would be a huge setback to have them stop his oral feeds. I know what we went through with Logan and his oral aversion issues. I can't imagine stopping the feeds and losing all of the ground we had gained.

    Hang in there!!


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