Monday, May 10, 2010

One Down, Two to Go in Search of Better Eating

C had the first of three appointments stemming from her last cardiologist visit April 22. We met with the invasive procedures cardiologist (my own made up title for this doctor) this past Friday. After reviewing the info from C's main cardiologist and talking to us about C's eating, he wants to do another heart cath. C is scheduled for her cath on May 17 at 9am. We have been told to expect at least 3to 4 hours for this cath. The cardiologist will be looking at every little thing going on with her heart. There is still some thought there may be some obstruction on her pulmonary veins. If there is I am really hoping he can fix this with a cath. If he cannot then C will more than likely be scheduled for another open heart surgery.

However, before I continue on, I must make clear that this is all still speculative. C's main cardiologist and the cardiologist we saw Friday are not 100% sure there is an issue with her pulmonary veins. The cath will tell us for certain. Also, even if there is an problem that needs to be fixed with surgery versus during a cath then she may be able to wait until her next surgery around 2 years of age. So, there are still a lot of unknowns at this point and as usual, everything remains very fluid.

Tomorrow, we take C to see the GI doctor again. Kevin is concerned that the GI doc will be a waste to time in that the doctor will tell us he wants to wait and see the cath results. So frustrating. I am hoping that will not be the case and he will actually move forward with getting the GI issues resolved, even if that means getting her scheduled for surgery to place a feeding tube.

Thursday we see C's main cardiologist again to go over all the new info from the other two appointments.

The goal at this point is to figure out the best way to get C to eat, gain weight and thrive properly. Cardiology is doing everything possible to rule out C's heart function as the culprit behind her crappy eating. Cardiology is still saying they really believe C's eating issues to be GI related but they are going to look at absolutely everything to make sure C has good balance as far as blood flow and function.

I have already been told that there may never be a real concrete answer to C's eating issues and therefore no concrete solution to fixing them. She has so much going on that each little bit that negatively affects her eating can all add up to one big problem and some issues, such as reflux, are things she will need to outgrow.

While we are not thrilled with having C undergo another heart cath right now we were expecting this to happen. She will go to St. Joe's in Tampa and we are praying that there will be no other issue with her heart and she will be able to come home that day.

Thanks for still keeping up with us and praying for C. I think about all of you all the time and am so grateful for each and every one of you.

1 comment:

Lisa said...

I was hoping that somebody would have had some answers for you by now and that Carolena would be doing better. I was glad that we didn't have to deal with a feeding tube, but I always wondered if it would have helped us put more than 3lbs on him in 3mo. Please don't hesitate to contact Laura [Stella's mom]. She's quite the pro when it comes to the tubes!
May your appointments go well and may you find the answers that you seek. Thanks for the update!