In a room

So we finally made it to a room at about 5:30.

Today was unusual compared to the last 2 weeks.

The last 2 weeks:
sleepy, decreased urine output, decreased oxygen (probably due to sleepiness), increased seizures, high temps, low temps, high heart rates, upper airway congestion (only last week), no poops for the last 3 days, discharge in her diaper

Today:
sleepy, decreased urine output (she normally holds her urine all night long and then has 2 or 3 really large wet diapers in the morning...this is when she has the discharge...that's why they thought it might be sludge from her kidneys...This morning she had not even 1 wet diaper...finally at 1 PM she had a medium sized wet diaper and when they cathed her she had a large wet diaper, NO decreased oxygen (even though sleeping she had great sats), maybe only 2 seizures this morning, NO high temps, YES low temps (92.1 in the ER), NO high heart rate, 1 medium poop (I gave her an enema and would have expected a larger outcome), NO discharge today.

I guess the things that are weird to me are...sats were great (maybe she was still just getting over a cold?!?!?!), No discharge (I did put vagisil on her once yesterday), No seizures today (does that mean she's getting better?), No wet diapers this morning and only 2 the whole day, only a medium poop with an enema and lactulose and not having pooped for 3 days (Sudafed D can cause constipation...according to Dr. Jason Stansfield who looked it up on the web-ernet...and I gave her Sudafed D all last week).

Last night she none of her desaturation episodes.  The 3 day EEG showed that some but not all of her night-time desats were seizures.  We started her new seizure med. Did I already talk about this?  I don't remember.  It has been used in Europe and Canada for 10 years with great success.  It works well in people who haven't found success on traditional seizure meds.  It works differently in the brain.  It has recently been FDA approved.  The only side-effect is sleepiness, but it is not as bad as with other seizure meds.  None of the Dr.'s here have ever heard of it.  Anyway, it might be coincidence.  But we started this seizure med yesterday and last night was the first night in months and months and months that she hasn't had a desaturation episode.  Jason and I both woke up this morning and asked each other..."Did you get up with her last night?"  And neither of us did.

This afternoon, while the Dr. was here, she did have one of her night-time desats.  I think it was good for the Dr. to see.  They are a lot scarier in the daytime when you can actually see her turning blue and you are awake enough to be scared.  During the night, you just kind of muddle through

Anyway...tonight about 9 I was telling the nurse, "I don't think she will need her sleeping pill tonight because she is so sleepy."  All of a sudden Ellie woke up and decided to be alert.  Unfortunately it was bedtime, so we had to give her a sleeping pill to put her back to sleep.  She got to stay awake for an hour or so.

I actually think she is doing really well.  I wouldn't be surprised if we get to come home within a few days...as soon as the cultures and tests get back.  We'll see.

So far the CT scan of head (hydrocephalus--water in the brain) looks unchanged according to the Dr.  All blood work, urine and discharge tests look normal.

So far, no answers.

Time for bed.