Lots to Ponder Over

Over the weekend Avery continued to be gaggy so the dr. suggested Zofran which is an antinausea med. Well that worked really well but it can dry you up which the our "wonder drug sudafed" also does so we held the sudafed. Well big mistake b/c he returned to his junky self and desatted ALL night even on O2.

Then I found out his tube change was for today instead of tomorrow. Dingy me, it's a holiday tomorrow. Now we were hoping the tube was displaced causing his increased reflux. Well of course that was not the case. It was in fine and they did not even see any reflux. He continued to be totally junky throughout the day even though we gave him sudafed.

We ran into the Pallative dr. and discussed his symptoms which she took to be more respiratory related but that was not our issue until today. She wanted a team meeting with all his drs (neuro, gi, pulm, and ccs) so she emailed them all. Apparently the email said we were concerned about a pneumonia for respiratory wise and not GI issues. So the email was deferred to the pulm. of course.

Her nurse called a bit ago and said they wanted him on a steroid prelone which was brutal the last time and did not seem to help. I told her it was more GI stuff (although while saying that he was desatting left and right) and that the sudafed was our wonder drug. Well she told me we should NOT be using it daily and it is only is meant to be used about every other day. WHAT.... and who told us to use it daily. So I say, Um your nurse practioner. She wanted him on the prelone for 5 days and NO sudafed. UGh...

Also he is so very junky and not looking very good. So don't be surprised if we end up in the hospital. His heartrate is really up and so are his respirations.

What a mess!!!!!!!!!