Wednesday, August 3, 2016

From Heart Surgery to Feeding Tube with a Few Trips Through New York

What a wild ride we have been on the last bit of time. I know I have been remiss in posting, but that's because I was just trying to hang on to our sanity here.

Have you ever seen the "I Love Lucy" episode, "California, Here We Come"? Lucy is trying to map out the route from NY to CA making sure to include all the side trips everyone wants to add. Ethel walks into her apartment and she proudly holds up the map above. When questioned, Lucy replies, "Well, the only thing is we have to go through New York three times on the way to Chicago." That pretty much sums it up. I feel like we have been through New York 3 times on the way to Chicago. Hmm, maybe I will turn that into a new euphemism in my life. 

Our younger son had some issues with his heart. We saw his pediatrician who wanted us to see a pediatric cardiologist. We saw her, did testing, did more testing, and then had a holter monitor. They initially thought we were just dealing with an innocent arrythmia and sent us on our way. I loved that conclusion and was happy with it (trip 1 through New York). 

But his symptoms continued to progress, they increased in frequency, and his already poor eating (he has had eating issues for the past year) was worsening directly due to this heart problem. We saw our Cardiologist again. This time she started to get concerned. The words heart surgery were thrown out, and not lightly. She was suggesting a scary issue and we had even more testing. Those results came back negative. Just in passing our pediatrician said, more to himself than to me really, "I wonder if this could all be food related". Was this man nuts? A heart condition that was so extreme it mimicked an issue that would need heart surgery and it's all caused by food? Yeah, I love ya doc, but you have gone off the deep end on this one. 
Tutt, tutt, I spoke too soon. I figured, after some research, it couldn't hurt to try out our doctor's loony idea. So, we started to change up the diet in our home. That's when we noticed some huge changes in our son's heart issues. It was incredible to watch. I was so excited. We proudly walked through the stores with our very specific shopping list knowing our pediatrician was such a rock star that he had helped our son's issues go away with a simple diet, all would be great now. (trip 2 through New York).

While our son's heart issues got better, his eating never picked up and we were quickly able to see a symptom that was being masked by the heart problem. He was having a lot of issues in his neck and stomach when he ate foods. This lead us back to our GI. It also lead us to more testing. The problem is, nothing was there (unlike his heart issues we could see on the testing). We did swallow studies, scopes, and even gastric emptying tests. It all came back beautifully. But our son was not feeling good when he ate, he was also feeling full far too soon in a meal (often after only a few bites), and just didn't experience a feeling of hunger most of the time. This all mimicked his brother's issues that he had when he was 6 years old. It also caused us a lot of stress as we kept picturing how bad our older son got before the doctors finally figured out what to do. 

So, we had a sit down meeting with our GI and laid it on the table. We refused to let our younger son get to the point our older son did, we wanted genetic answers if she felt this was a genetic issue, the list goes on. 

She listened intently to us and then got very honest. Our son had already stopped growing at our last visit. At this appointment he had started the downward swing on his weight and she was concerned that, just like big brother, it would start affecting his height as well and she didn't want that to happen. 

She also told us that she felt that there was a strong genetic component to what the boys had going on that was causing this feeding issue in them. I was excited, I thought we finally might have answers after all this testing. However, what she said surprised me as I hadn't heard a doctor say anything like it before. She said she felt there was a genetic cause to the kids issues but felt that science didn't know what it was yet. (hear those brakes coming to a screeching halt? Yeah, me too). I have never had a doctor suggest we might not get an answer because there might not be an answer ... yet ... even though there is a medical issue. 

So, we asked what the next step was. The next step was a feeding tube. Yep, round two. Two kids, two tubes, zero answers even though we have seen the best of the best with regards to doctors. 

Last week we went to the same hospital our older son was at 21 months earlier and had the same surgery he had to place a g-tube. Our younger son is now being tube fed just like big brother. (our third, and I pray final, trip through New York)

It was an easier decision this time around, but it's no less heart breaking. He's already seeing benefits from it though our first time of getting all his calories in was yesterday. We have to wean up to a full diet, we can't just start day 1 with his full calorie goal. I am far, far from organized yet. I am still figuring out a system of feeding two children with a feeding tube. I know I will get there, but I hate this crazy flying by the seat of my pants I am in right now. 

That's where we are right now, and it's why I haven't been online lately. I hope to pop on far more frequently, and hopefully with some great resources and insight for you all. 

Well, maybe not the great insight. 


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