Sunday, August 30, 2009

Precautionary Management

After a moderately eventful night things are moving along nicely for our girl.

The name of the game in the first few days after surgery is always dealing with Ellie's pain. At various times in the first few days we deal with pain from: her surgical incision, pain from her bowel as it wakes up, bladder pain as it deals with the Foley catheter which can cause bladder spasms and other non-descript pains that come and go.

To manage these various forms of pain, Children's has a Pain Management Team which visits a few times a day and checks in. Although Pain Managers sound like they may be a bunch of sadists along the lines of this six-fingered man in the Princess Bride, they are a group of doctors whose job it is to make sure that she is comfortable-a noble job with no evil.

The heart of her pain management is an epidural in her spine that numbs most of her lower torso and treats almost every kind of pain (other than the damned bladder spasms). A thin wire tube runs from a special IV pump into her spine and like magic she is comfortable. If things are perfect, it looks like a piece of saran wrap on her skin with a tiny black wire that disappears into her back.

Epidurals are quite fragile, however, and in the past we have only been able to keep one in her for one to three days at most before it falls out.

Losing the epidural isn’t a question of if; it is a question of when.

Late yesterday afternoon after Abby had gone home for an evening with my dad (a recipe for fun if ever there is one), the nurses started to have some concerns about her epidural site. Over the course of the day yesterday, fluid started to leak from the epidural wire and collect under the clear dressing. The fluid that should be going into her spine wasn’t all getting there and the wire might be sliding out.

We were likely going to lose her epidural during the night- something that always seems to happen at 3AM when the on-call person is busy with another kids, the equipment is slow to arrive, the meds are slow to appear on the floor.

It leaves Ellie grumpy and in pain. Usually at 3AM.

It also seemed like an avoidable combination of factors. So I borrowed a concept from my day job and asked about it with one of Ellie’s best nurses- Precautionary Management. Let’s anticipate what might happen when her epidural fails, take some steps ahead of time to prevent or minimize the adverse effects of her epidural failing and maybe avoid the gap in pain management that comes between the epidural and the next tool in the pain management toolbox. She agreed with this idea, told me where the snags in the process were and we made a plan.

At 7PM with an epidural that was still moderately effective, we started to get things in line for what’s next. A special pump was ordered, IV lines were strung and meds delivered.

Just in case.

A far better option for Ellie than the middle of the night scream and scramble.

And, it was all for naught.

The leaky epidural keeps doing its thing and Ellie is still comfortable.

But the overnight was a lot easier knowing that the morphine is in the room, ready to take care of business.

Which leaves us in a similar situationas 24 hours ago. Ellie is confortable, sleeping a lot and watching Cinderella and Sleeping Beauty a lot. But we are noticing that she is far more lucid when she is awake which is a definite step in the right direction. It is nice to hear her voice again and hear her ask questions that are very Ellie:

"Daddy, why is there a tube in my noonie?"

"Daddy, when can we take tube out of my nose?"

"Daddy is the suppository like the good ones or the big one?"

Just your average conversations with a three year old, right?


Anne said...

Do I even want to ask if the noonie is a new part of the anatomy?!?!
Glad to hear everything is going well! Is Abby alright........Jack told me what she likes to drink and that he makes them better than anyone else - kind of scares me!

Betsy said...

Happy to hear that things are going well!

Kate said...

Come on, man. How am I supposed to show my face at the Family Planning Association tomorrow with the knowledge that my three year old niece calls a part of her body a noonie? Should I send you some brochures?