Thankfully yesterday, Declan was moved to a full size bed which allowed us to be"Right Here" next to him. That made for a much more pleasant night I slept next to our little guy without much trouble. Frankly, I'd rather squish in next to him on that bed than sleep on the luxurious "fold a chair".next to his bed.
With the "Right Here" problem solved, Our current goals are as follows:
1. Get his drainage levels from his chest tubes down.
2. Make sure his lungs stay clear.
The biggest hurdle for most Fonan surgeries is the buildup (and release) of fluids around the outside of lungs/chest cavity. His drainage rates have decreased, but not at a nigh enough rate to remove the drain tubes from his chest. It is a catch 22 because he doesn't feel very good moving around with the tubes in but he needs to move around to help the drainage so the tubes can be removed.
The other thing we are working on is making sure his lungs stay clear and don't develop fluid buildup inside the lungs. Again, a catch 22 because it hurts to cough but he needs to cough to prevent fluid buildup.
Overall his progress is good. our biggest challenge is keeping him happy and in a good mood. He likes going on "outings" to the toy room to play, but of course he didn't like it today when we made him stand up on his own. Today he really didn't start "chatting" until around 5 tonight, after his Oxycodine took effect. We've told him everybody is rooting for him!
Those drainage tubes are the worst. Paul was so uncomfortable until they were out. After his fist surgery he was pretty miserable and it was mostly from the tubes (after his second when they had to reopen for pacemaker leads his drainage tubes were out right away and he was way more comfortable). Get better soon Declan! We are all rooting for you.
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