Sunday, November 8, 2009

Searching for Answers

Eli has been suffering for about a month now with his reflux....and finally on Tuesday, we are heading over to Seattle Children's Hospital to switch him over to a G-J Feeding Tube.  It's a fairly simple procedure because Eli already has his G-tube.  They use the same stoma (hole in his abdomen to stomach) and put in a different kind of button.  It has a tube inside that goes into the start of his small intestine (the jejunem - or JoeDenim as my hubby likes to call it! He's a nut...and had me cracking up about it earlier this week!)

We are praying this will give him some much needed relief!!!

It's been a lonely road.  It feels like no one really knows what to do.  When he's having an acute case like this, and you call and want to see a doctor, they schedule for an appt in a month....that just doesn't work for us!  They prescribe meds to calm his body down.  And that's it.  We want to fix the actual problem.

My husband and I have been doing the research ourselves.  We called the doctor and told them we wanted the G-J feeding tube.  Luckily the GI doc agreed  But, still, no one has even seen him for this since February.  It concerns us a little....that we are making the decision for him.  But a couple of our Nurse and/or PT friends agree that it should give him relief.  So, we are going with our parental instincts...and we are hoping for the best.  That's just the way it is for us in this "special needs world".  Don't you wish your child's specialist could come stay at your house for a weekend and really get to know your kid?  We do!

Since Eli has had these issues come up in the Fall for the second year in a row, it made me suspicious.  Then our PT friend said she has seen it before in kids like Eli.  They go to school in the Fall, get exposed to new germs and viruses and it affects their GI tract...and can lead to tummy trouble.  What a bummer.  Preschool was going so well.  We may pursue getting a medical waiver so we can get some services at home.  We'll see...

We just want our happy boy back.  The one who just got done with his best summer ever! :)  Hopefully he'll be back in a week or so!


Candace said...

Hey Amy, Does that mean that Eli will be on constant feeds, all the time? We met a boy with a version of that kind who had to be hooked up all the time. I hope that's not the case here. We will be praying. Faith is heading in for gastrocs release surgery on tue., we are being admitted on Mon. morning. I pray that Eli will get better no matter what decision is made.

Anonymous said...

Sweet hearts... We are praying for you! You are the best judges for you boy... The Holy Spirit guides you ! Shi& Joe

Anonymous said...

GI-stuff is not my specialty but I applaud your parental gut decision and share your frustration with unresponsive medical care.

Hoping Eli gets relief from reflux soon. Barbara