So many have asked, "How was the appointments on Wednesday at Duke?". I just wasn't ready to post the answer to that question until now. We took Kyleigh to the GI doctor in reference to increasing her dose of medicine for reflux and to the Cleft Palate Team for a follow-up. What we got instead was two extra appointments and a shocking discussion of surgery. So there you go...another thing for Kyleigh to fight. Basically, Dr. Ulshen feels that Kyleigh has battled reflux long enough. It is causing damage to her esophagus that was already weak. He could only up her medicine by 0.1 mL three times a day. He ordered blood work to make sure they aren't missing any important medical information. He also ordered a GI study to see how her stomach empties out food within an hour. We had that study done on Wednesday while we were already there at Duke. Kyleigh was a trooper. She lay on that table for a complete hour in a papoose strapped contraption while I sang every nursery rhyme and made up songs that didn't exist just to make her happy. We don't have the results of either test as of yet. Basically, Dr. Ulshen said it may be possible to add another med to her routine if these tests show that another medicine is helpful. Otherwise the next step is to surgery repair the esophagus and make it stronger. Huh? What?! Really?! The doc must have noticed my anxiety level skyrocket as he asked, "I'm sorry, but I thought we had discussed this before?". I told him yes in the distant past we had talked about this but I thought she would outgrow the reflux and that today we could just add more medicine to our routine. He mentioned that he understood my hesitation for her to undergo yet another surgery, especially one that comes with so many other risks. He then proceeded to explain how she would have to have a g-tube post surgery as well. What?!?!? A g-tube?!?! For the child we are working so hard to self feed.... oh no way! I begged him to up her dose to the maximum, set us up with feeding consultation and OT, and give us time to see if this would work. He agreed. We headed to get blood drawn and our next appointment with the Cleft Palate team.
The cleft palate team was the OT this time and she was not pleased with Kyleigh's lack of progress with feeding. She felt like along with reflux we are fighting sensory issues in her mouth that could be leading Kyleigh to avoid eating and gag/vomit as well. So she suggested we increase her OT services at school and at home and to at all costs avoid the surgery. She also told me not to worry about keeping her on a bottle because that is her main source of nutrition right now and we need to keep her eating/drinking formula until she progresses.
So, I rode home in the back with Kyleigh mulling over in my head, all that occurred on Wednesday. All I could do was ask God, "Why...?" and inwardly say this is just another thing that we must face. Thank goodness we have friends and family so we aren't facing this challenge alone.
So my friends, that is what happened on Wednesday. May Monday's visit to Duke Eye be less eventful and bring only good news.
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