When you work in a Hospital

Written by a parent (me) of a child with special needs

When you work in a hospital please be aware that you may be the only face that we see; you can brighten our day with a simplest gesture or smile; or you can darken our already frustrating day.

When you work in a hospital please don’t forget these are our children lying helpless and sick, we must be their voices and strength, but we are still human not super heroes.

When you work in a Hospital please understand that every word you say is magnified; when you say 10 minutes please recognize that to you 10 minutes and 25 might be the same, but to someone who’s watching and waiting for answers that extra 15 minutes can feel like an hour.

When you work in a hospital please remember that this may be your job, but this is our life. We don’t get weekends, holidays or vacations; we are on the clock 24/7.

When you work in a hospital you may be an expert in your field, but please remember that we’re the experts when it comes to our children, you may have years of schooling behind you but we have hours and hours of on the job training.

When you work in a hospital please don’t forget, we’re not here by choice; if it was up to us we would have stayed home, but we know we can’t do it alone. We’ve brought them here so with your help our children may be healed.

So this poem might give you some idea of the day I've had, long and frustrating. Noel's feeding issues didn't get any better today. She was pretty out of it all day, she slept most of the day. The GI Doc's finally came to see us (only 24 hours after they were first called) only to bring bad news. They don't have any answers either as to why Noel is having such a hard time tolerating feeds. Another abdominal x-ray was done to see the position of her j-tube and it's still in the right place. So the plan is to start giving her pedilite through her j-tube at 5ml per hour and see how she handles it, if she does good then we will increase it slowly. The best case scenario would be: she would tolerate the pedilite and then we could slowly mix in her formula. Once we start increasing the formula we might have to increase by only 1ml per 12 hours. So for those of you wondering how long that will take, you need to multiple 60ml (the total amount of fluid she requires per hour) by 12. And that's the best case scenario. Worst case scenario involves surgery along with other things.
Noel is scheduled to get a PIC line in the morning, because she'll need to be on TPN (IV nutrition) for an extended amount of time she needs to have better access. I'll let you know how tomorrow goes.
Tina