Okay. As of this morning we are off the norepi, (blood pressures have improved some) but he is still fluctuating so it could go back on at some point if needed.
This morning he lost an IV and his
femoral line was iffy. They were able to rewire the femoral central
line and it is now working well. They attempted to put in another IV
but it wasn't working, so in addition to his femoral line, he now has a
subclavian central line. At least he is able to get his medications
reliably. Which is good since he is on a lot of stuff.
and pain meds seem to be doing much better. He is off the dilaudid and
on fentanyl. And his dose is only 10mcg/hr! That only means something
if you remember that before the pentabarb coma he was up to 250
mcg/hr...which is enough to take down three Hubs. Granted, he is also
still on 2.5mcg pentabarb and on a hefty dose of methadone and they
upped the precedex, but still, I'm pleased with that. Today we are
going to start knocking down the pentabarb, but very slowly. He seems
to be incredibly sensitive to even tiny changes in his medications. He
was down to 2.0 but was back up to 2.5 when we ran into trouble the
other day and we will be going down to 2.25 today. With that change the
methadone was upped again. (When he was in his pentabarb coma he was
getting 4.0 pentabarb.)
Jameson is also getting an anti-nausea
medication but we aren't sure if it is helping or even if nausea is an
issue. It is so hard to tell what is bothering him when he can't tell
us or even really show us. He does seem to calm down more when he has
it in his system, but it also has sedative qualities, so maybe that
extra bit of sedation is what is making the difference. The only
problem with giving it is that is can also soften his blood pressures,
and we've had enough issues with that, thank you very much. We had gone
down on his feeds from 20 to 10 two days ago and back to 15 yesterday
without issue so today we will also be going back up to 20.
we've also been trying to use the power of distraction during wakeful
periods. His vision is much too blurry from all of the drugs to really
see the tv across the room, but Hubs held his laptop right in front of J
and let him watch Dinosaur Train this morning. Sure is better than
loking at the ceiling all the time. I think he even liked listening to
it when he was too tired to keep his eyes open.
Over the past few
days his belly tube output has been a brighter and fresher looking red.
We aren't quite sure what to make of it and neither are the docs.
Last night he also had about 2oz of bloody bile coming from his NG tube.
It hasn't continued and we aren't quite sure what is causing it. Hubs
is slightly concerned that is could be radiation enteritis. I hope
not; it sounds yucky and we don't need any other problems for our sweet
The belly tube and chest tube output has decreased over
the past few days, but not dramatically and not enough to convince
anyone it is a result of radiation. I pray this trend continues and it
IS a result of radiation. I want nothing more than for Jameson to be
well and come home.
Thanks for checking in. I'm sorry the
updates are always so long, but there is always so much changing all of
the time and it is all so very complex. We truly appreciate your
willingness to continue reading about and praying for our smiley pie J.
God Bless you all!