Sunday, September 17, 2006

Professional Parents

A doctor told Abby the other day that it is rare for the doctors and nurses to get a baby with two parents with Ph D’s like Ellie has. I don’t know where this came from but I guess our line of bullshit and ability to spew medical jargon right back at them has convinced them that we are far better educated that we really are. We agreed that we will correct them in the future if it happens again but for now it is fine by me that they are okay with us understanding the intricacies of what is going on with Ellie and her gut. I think that this also comes from our fearless attitude to point out to the doctors when they are doing something that doesn’t agree with the overall plan, or just doesn’t make sense.

For example, a few weeks ago, Ellie had a new kind of test done by a researcher at Harvard Medical School to test the way that her liver functions by testing the way that chemicals appear in the gases that she breathes out. Simply put, they injected her with a chemical that is in her normal TPN and watched for it to appear in her breath. Well, the researcher had never done this test on an infant before and during the course of the morning Abby troubleshot all of the details of this woman’s very detailed plan to do her research. More than once I watched Abby say to the doctor: ‘are you sure you want to do it that way?’

We are told all the time that we are different than other parents and it has taken some time for the doctors, nurses and others to get used to us. Some have been reluctant to let us in to the loop and some have welcomed our opinions and ideas. Fortunately Ellie’s surgeon is in the latter category and wants to know what we think, what we are seeing and what we want to do for her.

One of the things that we have learned is that even though the nurses take lots of notes on Ellie’s care, not everything is recorded. For example weights of diapers is recorded to the gram, but no information is recorded about the color or consistency of the diapers. The answer to improving her situation may lie in these shades of green, brown and yellow and he wants us to add that info to the process.

He has even suggested that we start reading medical journals, something that other doctors have told us to avoid because they were afraid that we would know only enough to be dangerous. Children’s has an online subscription to Pediatrics which is very interesting to read and I have found cool stuff that applies to her care while reading through late at night. We avoided Google mania at the outset which was a good step, but now knowing new things can be helpful. For instance, I found something in Pediatrics last week that showed that a small dose of Vancomycin given when Ellie is disconnected each day could reduce the number of line infections without increasing the risk of vanco resistant bugs. We brought this to the doctors and may try it soon.

For all of you Short Gut parents with a CVC or PICC line, the article is on the Pediatrics online version: http://www.pediatrics.org/cgi/content/full/116/2/e198

We are going to be having meetings every week or so with the whole team to talk about the Ellie puzzle and have us participate in solving the puzzle. That will be an interesting experience but Abby and I have participated in enough meetings to do this. We hope that it moves the ball along.

1 comment:

jack said...

I made a discovery about Ellie yesterday that anyone who visits should know. The girl loves Irish songs. She was a bit fussy and her Grandmother looked sheepish about how to make her happy. At one point we tried to put her in the crib and play. She played with my fingers for a few minutes then got bored. I walked that cloth duck at her and she melted the entire room with her smile. But pretend ducks are only pretend ducks. So when she started to yap again I sang her "The Merry Plowboy." She didn't laugh until the part where "we're all off to Dublin with the Green and the Green."
I think I sang every song I know. I tried to slip on some of Harry Belefonte's songs and she yapped. I came back with "The Wild Rover" and followed that with "The Day that Patty Murphy Died." I tell you, that child is Irish. So, if you are going to visit, learn some Irish songs. She loves them.