Now what?!?!?!

No going home today.  They said maybe tomorrow.  I doubt it.  I think a few more days.

The pseudomonas that they cultured from her lungs (from the pneumonia) was resistant to meropenum and all other antibiotics they tested on it.  So they think that her getting better was coincidence and not due to the meropenum.  So they want to switch her back to ertapenum.  I don't think it is coincidence.  She did good on meropenum, bad on ertapenum, good on meropenum and now they want to switch her back to ertapenum.  It sounds like a bad idea to me.  The primary team is going to check with infectious disease 1 more time to make sure this is what they want to do.

This is bad news because every really bad pnemonia she has ever had (which has been 2 of them...and she almost died both times...LITERALLY...they were very severe) have been pseudomonas.  So if she gets another bad pnemonia, and now if her pseudomonas is resistant to all of the antibiotics they tried...I don't even want to think about it.  They said that it doesn't mean there aren't any antibiotics that won't kill it, just that they will have to look harder to find an effective antibiotic.

They now seem more concerned about her blood pressure because it happened 2 nights in a row.  They said most people think of blood pressure being related to the heart, but it is really closely related with the kidney.  So they are going to do blood and urine to look at her kidneys.  They will also look at her electrolytes.

She has had her last dose of valium.

Tomorrow they may switch her baclofen from 4 times a day (every 6 hours) to every 3 times a day (every 8 hours).

She was awake for 4 hours this morning (which is more than previous mornings).  And so far she has needed no oxygen all day today (and it is Noon).  That is great.  That means her lungs are doing better.

We have been tracking the mount she is getting out when we cath her.  Her 4 AM cathing is always HUGE!  And the majority of her daytime caths are small.  We have been cathing every 4 hours during the day and every 6 hours at night.  Logically you would think switching to 6 hours during the day and every 4 hours at night.  But then you realize that Mom or Dad would be getting up every 4 hours all night and that we would be waking Ellie up every 4 hours during the night and everyone agrees this would not be a good plan either.  So we are looking more closely at putting in a foley (a cathedar that would stay in) overnight.  This does raise her risk of infection by alot.  So I don't really want to do it.  But if the large volume of urine is what is affecting her high blood pressure, then the risk may be worth it.  And we can't really think of any other options.  If we don't want to try the foley I was thinking of doing 7AM, 1 PM, 7 PM, 1 AM.  If that doesn't work then 7AM, 1 PM, 7 PM, 1 AM, 4 AM.  She usually wakes up around 1:00-2:30 anyway... for a bit, then she will go back to sleep.  It really just depends on what time this huge volume is produced.

She is doing well overall.  All vitals look good (except BP).  No oxygen yet today.  More awake.  There are just a few issues to work out.