When I got to the hospital this morning, I could hear Dylan giggling and playing from down the hallway! He was so full of energy and it was lovely to see. The right hand chest drain had been clamped for well over 16 hours with no more air leakage so at 11am they removed it...
Then air started leaking causing the dressing to fill up like a balloon! Dylan got very distressed by it all of course. Eventually the air found it's way out of the dressing and has continually leaked since. At the moment whilst it is leaking and can escape they aren't rushing to put a new drain back in, the problem when it's only a small amount of air is that there isn't a lot of space to put the tube into without catching more cysts.
The left hand side isn't doing anything so they will be clamping that drain at 2am tomorrow all being well and doing an xray at 9am. Fingers crossed the right side won't accumulate / collapse overnight if the air can escape out at the moment. That way at least we will be able to see what is happening in the morning.
I can see myself being on edge all night worrying about that darn right hand side!!
On another note.. I have had contact, through one of the LCH groups, with a lady in the US whose daughter had the exact same rare presentation as Dylan and her outcome was very positive! I have passed her doctor's details on to the team here so hopefully they can discuss Dylan..
Lots of ups and downs, but that is to be expected. The next few months are not going to be smooth sailing at all and we may be in for a LONG stay here but fingers crossed there is a light at the end of the tunnel, no matter how long it is...
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