Tuesday, March 2, 2010

The GI Series #5 - Back to Square One

We are very frustrated right now.

C is still not eating and is in a lot of pain. The GI doctors office has called twice and told us there is nothing wrong with C's GI track. No acid reflux, no ulcer, no acid damage, make-up is just fine and fluid and all is moving just fine. Actually the GI office has only called once. We had to call today to see if there was any info from the scan Monday. We still have not talked to the actual doctor. The nurse actually told us today that it looks like the eating issues are heart related and referred us back to her cardiologist. The whole reason we have even seen a GI doctor is because her cardiologist has said from day one that her eating issues ARE NOT heart related. There may be some minor eating issues related to her heart but not the major issues we are dealing with. We do not feel that the GI doctors are listening to us and that there is something wrong with C's make-up that is making eating miserable for her.

I contacted our pediatrician today (almost in tears) to get his help. Fortunately he is great and will help us. He is not going to let C get in a danger area, at least I don't think he will. I am beginning to loathe all these doctors. I HATE the finger pointing. And I really HATE that the GI doctors seem to be the only ones who are not on board with what we need with C. Kevin and I would love to just stop doing all we are with C. Fighting with her for every feeding. Stressing her heart with every feeding. Seeing her in pain. Hearing her crying all the time when she is eating. It is horrid. But we just will not give up on her. We will continue to do what we are because she needs to eat and we have to be the ones to make her...no matter how much it tortures us as well.

So awesome.

I am seriously going to cry.

Right now Kevin and I are weighing our options and seriously considering taking C to CHOP (Children's Hospital of Philadelphia) or Boston Children's Hospital. Both these facilities are the best kids heart hospitals in the country. I have no idea if these are even feasible...will my insurance pay, how do we arrange travel and care of the boys at home, will we get to see the best doctors? Plus, I am out of leave at work and who knows how long we would need to be there. But, we want the best for C. We are still open to finding someone in Florida but our options are smaller with each doctor we see and cross off the list. Any suggestions would be so greatly appreciated. If anyone has any type of in with a great pediatric GI and could get us in to see them I will be eternally grateful. I am not above begging at this point. :)

Other than this latest round of crap with the GI's we are doing well. For every thing C is going through she is still the happiest little thing. She smiles at us all the time and is really laughing now. She LOVES to play and, of course, to be held. The boys are doing great and school is going so well for them. They each keep bringing home awards. Kyle is really loving gokart racing (even though it scares me silly) and Todd is doing great with Tball. We are determined to have as normal a life right now as we can and we are doing pretty well at it... at least most days :)

Thank you again for all the prayers and good thoughts being sent our way. I am so very grateful to everyone who continues to keep up with us and to all those who help us out.


karen said...

We are about two hours from Philly so please let me know if you wind up going there! We're an awkward distance for staying here but can offer a visiting spot for weekends or days off or whatever and, if school is out, park your kids here and they can play with our boys! I wish I knew some answers for you but, failing that, will pray that someone with an answer turns up soon.

Lisa said...

Ashley - please get in touch with Laura, Stella's mom. I know she can answer a lot of the questions you have about Boston & insurance. Laura's email is on her CaringBridge page & she left you a comment on the last post.

angie said...

I highly recommend MUSC Children's Hospital in Charleston, SC which is where Emma went for all 3 surgeries. They are the only Children's Hospital that has a Peds Cardio ICU & they are wonderful. All of the staff is great. Dr. Bradley is one of the best surgeons in the country & highly recommended. All the heart babies in SC. I can give you the name & number of one of the doctors we saw there if you would like. At least SC is closer than PA or Boston.

Laura said...

There are a ton of places in Boston where families can stay while their child is at Childrens. All you have to do with insurance is call them and ask if a certain hospital is covered. Boston is out of network for us, but it's still covered 80%. Children's here in Boston also has a peds cardio ICU. The nurses in CICU and on the "floor" are highly trained in heart. The GI docs here are amazing as well. They did Stella's G-tube surgery. Please let me know how I can help.

Kristi said...

I spoke to a friend physician, and he offered that if you can't get good dialogue with the GI doc, then you need to see another. Angie just loved Children's Hospital in Charleson. They were so fantastic with Emma. We'll keep praying while you still work on answers.