Journal entry by Barbara Bradley — Nov 24, 2010

I was on-call last night with Katie and although she finally fell asleep at 11pm I had to wake her at midnight for one of her meds. After waking her, she doesn’t go back to sleep until 4am! That’s right. Since late Sunday she has had a rash and she was miserable last night. They gave her something around 3:30 and that allowed her to finally sleep. Unfortunately, around the 6-7 am time people start coming in and waking us up for this and that. So frustrating! It’s a good thing hospital doors don’t lock because I would never allow anyone in.

More fun began when the pediatrician came in and asks more about her rash. He had sent dermatology by a couple days ago and they are still not sure of the cause whether it be a reaction to bedding, drugs or a virus. Then it comes.

“I will need to follow-up with dermatology, neurology and anesthesia because if this is a virus the surgery can’t happen”.

You could have knocked me over with a feather at that comment. What?! I have been fighting to get this surgery moved up and this little peds doc is gonna open a can of worms. My daughter stops breathing 30+ times a day and you want to delay this for a few bumps that no one can even determine cause?? I literally envisioned throwing him out the window.

I waited all day wondering if this opportunity is about to be taken away and what am I going to say this time. I don’t have it in me to fight and plead anymore. Around 1pm the dermatologist and another pediatrician came by and he looked at Katie again. The rash is still there. Some places are better but some places are worse. He said as long as she doesn’t have fever this should not prevent surgery. I still keep checking her obsessively and I hold my breath every time they take her temperature.

She is still having between 20-40 each day and she stops breathing. This is where everyone weighs in the risks and benefits. I don’t see anyone thinking a little rash should hold up a surgery there is only one opportunity for between now and mid December. I can not handle one more thing. So, if that little peds guy comes back to interfere again I think I just may throw him out my window.

One more day. We just have to get through one more day. Pray the rash just goes away completely so that we don’t have to worry about this at all.