Katie's Condition and Diagnosis
Katie was born in December of 2001 and had some serious medical issues. How is it
that we are just now getting word out about her and asking people to get involved
and help us with financial contributions? Aren't we coming to the party just a bit
late? Does Katie still have a critical problem? Why should the general public get
involved and help in a situation that is now over 5 years old?
I think these are excellent questions and I believe that I simply cannot give enough
answer to any one of them and make good use of my time to write it nor could I expect
more than a few of you to actually read it. I'm going to try and provide some concise
information about where Katie's health has been, where it is now and where we'd
like it to go in the future.
Katie's overall diagnosis is Jejunal Atresia. I provide links to this condition
and some of her surgical treatments on the home page so feel free to
jump over and
read that before continuing here. Jejunal Atresia basically means a partial
or total obstruction of the small bowel which frankly is much more simple a definition
than you'd ever imagine. You will read medical commentaries that describe the condition
and how a small surgery to remove the obstruction and resect the bowel is all that
is required to recover. This may be true in some cases but it was not true at all
in Katie's. They were able to remove the obstruction and she certainly has bowel
motility but it's not normal by any definition and understanding why has truly become
a life's quest for us. We have tried treating her condition with fergensol, immodium,
Metronidazole, phenobarb, actigol, Reglan and a host of other medications to improve
motility. Their are a few basic problems which presently are not well understood.
Her motility is slow and as a result negative bacteria grow at a rapid rate and
cause her a lot of abdominal pain from excessive gas in the bowel. The Metronidazole
kills all the bacteria including the healthy bacteria so we try and repopulate it
using a probiotic made by Align. The end result is that we've not found a way to
improve this and as a result we may have to manually 'vent' (let air out) of Katie's
stomach a few to several times a day. This is done using her gastrostomy tube and
a plastic insert we have which allows us to basically burp for her. The problem
is that a lot of the gas doesn't stay high enough in the bowel tract where we can
release it and it moves lower causing spasms in the colon wich produce very loose
watery stools that can manifest quite suddenly.
We've been told the reason for all of this is bowel motility. Katie's bowels just
don't move food fast enough. We've used other drugs to try and speed up motility
but this only made problems worse. Apparently Katie has nerve damage to her bowel
which causes parts of it to not contract at all or to contract in the wrong direction.
Ultimately this causes a buildup of food in the bowel and produces a lot of vomitus
which is what made the nissen wrap of her esophagus necessary and is why she spent
8 months of her life not gaining any weight at all.
Presently, we don't have a solution. We've tapped out all the talent in Boise, Idaho.
We've been directed to seek further diagnosis in Utah, Oregon, Washington or Massachusetts.
A physician from Kaiser Medial in California told us our best bet would be Seattle
or Boston and this also happened to be what our Pediatric Surgeon told us to do
as well. We need to do something because we'd really like our daughter to be healthy
and to not have this feeding tube. The unfortunate thing is that our only source
of medical coverage for Katie is Medicaid which we get through Social Security Disability
right now but we can get through a program called Katie Beckett if our income ever
gets up to the point where we don't qualify for Social Security anymore. Medicaid
happens to be very strict in what it covers and further diagnostic and testing may
not be covered. This of course doesn't help us at all with covering our monthly
fixed expenses while we spend a few weeks or months wherever while this testing
is done. We were told by our Pediatric Surgeon that the testing is lengthy and can
be very expensive. That's of course why this site has been created and why we are
now asking for help.
We are stuck in Boise until we somehow come up with the money to cover our monthly
expenses and the related costs of lodging, testing and travel to wherever we take
Katie.