I have not updated in a while and I want to get caught up so that I have all of Shade's journey recorded. Back in the beginning of June, we found out some great news. Here is how I posted it on Facebook: "We are going to Minnesota at the end of July for Shade's evaluation!! The experts will talk with us and review Shade's records and do tests and they will determine if they think that Shade needs the TP-AIT. So happy because this is what we have been waiting for, but terrified all at the same time. Also, insurance has not been completely worked out so we may end up having to pay out of pocket for this, but it will be worth it to finally find out if he needs this surgery or not." I was super scared about how the whole trip would play out and how Shade would behave for the 3 days of tests and doctors and talking. He did so much better than I thought he would do and I held up better emotionally than I thought I would as well. I went in with no expectations and a few questions. I was fully prepared to accept whatever they thought was right for Shade. Ultimately, how we proceed with our son's treatment is up to us, but if they won't do the surgery, it doesn't matter if we think he needs it.
In the ER again in June 2013
My main concern going in was the results of his fecal elastase test in June. If you recall, I had practically begged Dr. Palermo, his GI in Cincinnati, to do a fecal elastase test in April because he was already at a 99 back in November and had more attacks of pancreatitis since then. He assured me that it was unnecessary because "the damage would not happen that fast" and it would be pointless to do another test so soon. Well, when we had our appointment in June, practically the first words out of his mouth were that he wanted to do a fecal elastase test. What difference that 2 months made, I don't know, but I am glad that he did it. The results came back as 56 and anything below 100 is considered severely pancreatic exocrine insufficient. This means his pancreas is shutting down it's production of enzymes. He will need to take enzymes with everything he eats for the rest of his life. I had no idea what this meant for his endocrine function and I was concerned that if we waited too long for the surgery, that he would not have enough good islet cells left to harvest. Luckily, these concerns were addressed and I will fill you in on our trip in one of the next posts!
I don't want to get too ahead of myself though. Also during that visit with Dr. Palermo he mentioned that he has seen some small gallstones on some imaging from Kosair and that if Shade has any stomach pain that we should take him to the ER to get his amylase and lipase levels checked to rule out pancreatitis. He had actually had some mild pain in May and we almost took him to the ER, but he was eating and drinking and only slowing down every now and then. This lasted for 4 days and then he was completely back to normal. Upon hearing about the possible gallstones though, we decided that if it happened again, we would take him to the ER. Well, it did happen again on June 27, just a week after our appointment in Cincy. We took him to the ER and they tested his levels and they were normal. We were relieved, but still concerned about the whole gallstone issue. We figured we would just ask at his next doctor's visit if he needed another abdominal ultrasound to confirm or what. The docs in the ER did not seem concerned when we mentioned it to them and even Dr. Palermo had not mentioned surgery or anything, so we didn't know what to do. Well, this brings us to Shade's next attack in July which I will make a separate post for and then the one after that will be our MN trip. Stay tuned!!
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