Day 5

Well once again they attempted to take Ambrose off of the CPAP.  After about 2 hours he was coughing alot, breathing rapidly, and his sats were dropping.  Again he seemed to have some collapse on the left and needed to go back on CPAP at an even higher FIO2 to get back to where he was before.  He is clearly not ready to come off of CPAP which he needs to do before going home.  It is possible to go home on CPAP but it would be through a vent which we would have to learn how to use.  It' s a big production. 

His trach cultures did grow out some bugs -hemophilis, pseudomonis, GBH? (don't know how to spell them) but they should be covered by the antibiotics he is on. 

...I was just told it is still a possibility that he might be able to start the ketogenic diet next week.  I keep hearing conflicting info and his neurologist won't just come talk to me himself.

I was also trying to get his hearing aids, which were ordered 6 weeks ago after his ABR (hearing test).  I received a call two weeks ago that they were in (here at the hospital) and we needed to schedule an appointment for a fitting.  Now the audiology secretary insists that they have yet to be ordered. And  the audiologist is out sick.

I freaked out earlier when, after spending a couple of hours trying to upload pics to create a Sophia slideshow, this blog disappeared and gave me an error code and saying that it could not be saved.  I found directions on a message board on how to restore it.

...Ok Neurologist just came to talk to me finally.  The dietitian claimed the Neuro didn't feel comfortable starting the diet until he was healthier.  The Neuro said the dietitian was the one who cancelled it. Either way, I don't think it's going to happen.

...Am now told we will probably be here at least until Monday.

Aaarrgghh!