Ren and I took turns wrapping her up the last few nights and holding her as tight as possible for over an hour each outburst. Till what ever it was, past.
The sedatives played a part, I think, I hope.
We also set up the G-Tube and gave her a late night feed.
Which is becoming common, again. argh...
I've read about the extra calorific intake kids with so many sores need and it's becoming clear to me now why she's in that boat. She currently has so many open oozing wounds it makes sense she'll need more to replace all that plasma and blood.
Getting it past her throat is an issue. I'm not sure it's a manner in which we can use with any regularity anymore. A large mouth feed in the day has ended up resulting in late night issues and gurgling. We're also not sure if it's saliva that's gurgling, broken skin flaps or if it's just that the saliva can't pass her esophagus from something going on further around the corner.
I don't feel the rigors of changes like a few months ago anymore, but losing a morning of work due to these types of things is irritating and difficult to catch up. Especially if it's to be a draining change, full of screaming, puncturing blisters, tending to extremely raw areas while trying to be nice to all the other people helping.
Lucky for the paid ones.
They can quit when it or I get too much.
The loved ones, duty bound must suffer with Ren, Raquel and I.
I guess somehow with relationships there's finding the happy medium.