Every time we meet or hear about another kid that has short gut or another condition/disease/disorder that requires them to be on TPN, all that Abby and I can say is that we are unbelievably lucky to have stumbled into the great things that are going on at Children’s.
Plain old shit luck.
To think that we were torn for a while at Yale about whether or not to come to Boston.
How different would Ellie’s condition be right now?
Would she have liver disease? Would she be very sick? Would we be wearing the transplant beeper waiting for multiple organs?
The answer to all of those is disturbingly probably, yes.
Instead of the very pale, very happy little girl who eats Cheerios as fast as she can find them: we would be looking at serious liver disease.
Sometimes we forget that there are kids all over the place that are on the ‘old’ Lipid and that there are families that are living through the really bad, scary parts that we were afraid of when we heard about the reality of Ellie’s condition in April.
Liver disease has all sorts of nasty symptoms. All things considered, we got off pretty easy with a bit of jaundice and some yellow eyes.
Shit luck.
We didn’t have inside information or a relative that knew gastroenterology. We simply came to Boston and had this fall into our lap.
But the encouraging thing is that the word about Omegaven is spreading.
I learned last week when I went to the hospital to get meds it is spreading so well that the folks at Children’s can barely keep up with the parade of sick kids that are making the pilgrimage to Longwood Avenue to get on Omegaven.
We know of another family that is at Children’s today from Indiana and hope that their visit goes well.
In the meantime we will keep spreading the gospel of Children’s and Omegaven along with our understanding that this may not be the answer but it is a lot better than any other option.
There aren’t any secrets and we all want our babies to be healthy.
So I will keep ranting about our great luck and great care in Boston until someone tells us to stop.
Knowing the work habits of the folks at Children’s, it probably won’t be them that yell uncle.
4 comments:
Dear Gib,
Please don't stop your amazing blog. Your daughter and family are an inspiration. I brought my 6 1/2 month old short gut daughter to Boston for Omegaven after finding your page and all the great info about Omegaven. I am staying in a host home with only my daughter, dad is working hard with bi-monthly visits (hopefully) from Las Vegas. Shit luck is a good thing, thanks for sharing it!!
You can talk about luck all you want, but I was there the day that Dr. Puder walked into Ellie's room for the first time and said "we're doing this thing with fish oil..." You and Abby asked really smart questions and were able to make sense of an experimental treatment very quickly. I stood there thinking "yikes, how the hell do you make a decision like this about your sick baby?" And then I thought, "well, if it's related to fish, Gib and Abby are probably in."
Luck had a lot to do with it, but so did the fact that the two of you are wicked smaht.
Oh, and by the way, I think you should establish a policy that every post must have at least one new picture. Throw us a bone!
Did I ever tell YOU how lucky I am to know you three? Rock On!
Post a Comment