We’ve had better days…

Last night was rough. She’d sleep 10-15 minutes then scream for 20-30 All. Night. Long.

She spent the evening vomiting again last night and lost about half of her calories that way and then was exhausted when she went to bed but between the night feeding and the catheter she just couldn’t sleep. Throughout the night we stopped the pump and took out the anchored catheter but we still couldn’t console her. She would sleep from exhaustion for a few minutes only to wake up in a wave of pain that would throw her arms and legs up and she would scream. Pain from what, we’re not sure. She says her belly. Which could mean any of the things that she’s got going on.

The plan for feeding today was a continuous drip of 50ml/hr all day (and hopefully night). This was like a punch to the stomach for me. Seeing her tied to that stupid pump just throws away all the work we’ve done for the past six years to get away from that. But honestly, I would do anything at this point to help her feel better. And we have to get calories in her so we do what we have to do.

She also has very dark urine with blood in it. Not good.

She cried a lot of the day today but did take a nap so that was good for her. I tried to nap but my mind just wouldn’t stop and let me.

Both urology and surgery called to checkup today and both said maybe we should come back down there…. So tomorrow morning we will go back, hopefully just for the day to figure out what’s going on. Hopefully…