Wednesday Update

I know I said I would update Monday, but it's been a long few days. On Saturday and Sunday, we all kept remarking that Virginia seemed really sleepy. Actually she seemed more drugged than anything. She had a dose of klonopin (in the valium family) at the hospital Friday morning before we left, so I kept attributing her state to that medicine and her surgery.

But as Sunday wore on, it kept bothering me more and more. When I put her in bed at 8, she went right to sleep- something that is almost unheard of. Her eyes actually closed when her head hit the pillow.

I checked on her about five times over the next two hours and she never stirred. Usually, if you walk down the hallway, she's awake for hours.

Findley was starting to get annoyed with my insistence that something was wrong.

Honestly, I was scared she had had too much klonopin. She takes a little at night to help her sleep (ha, ha) and I was worried one of her new post-surgery meds was reacting with the klonopin to make it stronger.

At 10:30 I decided to try to wake her up and see if she was ok. Well, I couldn't wake her up. We got her out of bed, took her into a well lit room, tickled her, put ice on her face, yelled- nothing worked. She didn't even stir. At this point, we were both fighting panic.

After a late night call to my pediatrician/next-door-neighbor (we love you, Mary), we headed for the ER.

Turns out that Virginia had a raging UTI. She's never had one before and she wasn't running a fever, but the ER doc guessed it on the first try. That's why she had been so listless- she was sick.

After two doses of antibiotic, she was a new girl. Ever since Monday afternoon, she has been alert and happy.

In other news, the feeding tube continues to be overwhelming.

I am too tired to go into much detail (and I am sure it is pretty boring), but so far it is proving to be a difficult task to judge what to put in it. I tried four ounces of pediasure yesterday and it made her sick.

Today I tried putting most of her liquid in the tube (since she is more likely to aspirate the liquid) and she coughed more than she ever has. I guess she is having reflux and aspirating that?? I am still hopeful (trying to be more like Pollyanna and less like Scrooge), but it is very frustrating. I am also spending more time than ever dealing with her feeding.

But she is feeling better and that is what matters most.

Surely the other stuff will work out in the end. It is just really complicated.