So the past few weeks with the GERD diagnosis have proven very frustrating. Madilyn's primary pediatrician diagnosed the GERD and prescribed an addition reflux medication for it. In the meantime the GI doctor finally stepped in and stated that they think it's a digestion problem, not GERD. I asked them how they figure it's digestion when the problem is keeping it in? No response.........UGH!! They have ordered a gastric emptying test while we are in Milwaukee in two weeks and ordered her to be on erythromyacin (yes, it's an antibiotic) to aid in digestion and added 100% corn oil to her feeds for added fat. I did the oil for a week with no weight gain, questioned why they were adding the oil rather than figuring out how to keep the feeds in? They're response was to up the oil from 2 ml per feed to 4. UGH......at the same time we had started the antibiotic and rather than aiding in digestion the combination of the two made the puking (which was already horrible) absolutely violent. It was the most horrific thing I have ever witnessed. So I, of course, stopped the antibiotic and the oil and called the GI nurse... yelling at them as I feel they are not listening to me at all, and maybe if I yell and scream out of pure frustration they may listen. Their response, the doctor calls Friday night while I'm at work and tells my husband that we need to get Madilyn to Milwaukee to get her switched from a g-tube to a j-tube. NOT HAPPENING!! A J-tube means it goes straight into her intestines and she's on a 24-hour continuous pump feed and all the progress we've made is undone because she's constantly attached to a feeding pump and her stomach is not being used at all...........UGH!! I called Monday to update them that the Prilosec we started on Saturday is actually working and is cutting the puking in half after only two day...........no response............they call Tuesday (today) while Home Nursing is here and I happily get to tell them that while trusting my gut instincts Madilyn has gained 1 1/2 ounces in 3 days!!! WOOHOO!!! 13 lbs 11 ounces and her first gain in 4 weeks!!!!!!!!!!!!! They proceed to tell me that it's fine to not give the antibiotic or oil until we see what the scan shows at the end of the month but to be prepared for the j-tube eventually. I politely informed the nurse that until they try other dietary changes or ways to soothe the GERD there will be no J-tube and if they are willing to do it then set up the referral to another doctor that will listen to me. I'm not an idiot, there are tons of other options........I just feel like she's taking the easiest/quickest way out for her which means huge huge setback for us and I won't allow that to happen. Madilyn has come way to far to start doing things that will potentially set us in the wrong direction. I will continue to trust my gut and advocate from the rooftops for Madilyn so she gets the absolute best life possible.
In the meantime we go about our life tracking every little spit-up and being very thankful for the little bit of relief the new med is giving and educate ourselves on another new medical condition we have a lot to learn about. I have second guessed myself for not trusting my gut in the past and I will not do that again. I know Madilyn better than anyone and if I feel someone isn't listening to me, even if it is her doctor, then I will find someone who will.
When all else fails and we are beyond frustrated we breathe, deeply and we sing........because even with all the setbacks and the frustration those happy little smiles and kisses make every day worthwhile and give us tons to sing about....:)
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