Catch up

I will attempt to catch you up...Blogger would not let me post yesterday (because the internet is too slow in the hospital).

Her heartrate and blood pressure was up so they gave her a half of a bolus of IV fluids.  This brought her heartrate down for the rest of the day (not to normal...just lower than it had been) and that night.  However it also made her pale and she went to sleep and then required oxygen.

This was as far as I had caught you up to.

Then her heartrate went back up the next day and night  We repeated the IV fluids just like we did before and we had exactly the same results...lower heartrate and pale and sleepy and needing o2.

Today they are going to try if her heartrate goes up that they will give her more fluids through her g-tube instead of IV.

For today she was awake from about 6:30 AM  until 10 AM. Now she is already sleepy.

She has not had any fevers.

She is still congested.

They are going to try weaning the valium.  The original plan that the rehab Dr. suggested was to give meds every 3 hours and giving them 7 times per day.  That just sounds ridiculous.  I currently give meds twice a day...going to 7 sounds like waaaaayyyyy too many times.  So I started crying and he realized how overwhelming that seemed and so he is now working on a new plan of eventually giving only baclofen (without valium) if she can tolerate it only 4 times per day.

I guess I didn't realize how much the baclofen pump was helping.  She has had one since she was 3 years old.

My main concerns right now are #1) finding a reasonable dose of medicine that we give only during daytime hours and a reasonable amount of times per day and that doesn't make her too sleepy #2)  her congestion

I realize that #1 is asking a lot and is going to take some time.  But I am sick of being here and I'm sure Ellie is too.