On Monday morning, we saw his GI motility specialist, and on Tuesday, we saw the surgeon. The GI doctor decided that yes, we are really at the point where we cannot keep going without surgical intervention. We have hit a wall with the laxatives, and I do not intend to do enemas on my 2 year old son long term. The child has maxed out on 8 squares of ex-lax and 3 capfuls of Miralax a day. It hurts him too much. We have tried Milk of Magnesia, Mineral Oil, and adjusting his diet. And really, none of it is working well at this point. So she does feel like it is time to intervene. However, he has severe distention (gas) in both his stomach and his colon. This does raise a couple of questions. So, before we do surgery, she wants us to go back to Houston to see his old GI motility specialist there. She wants a second opinion, which I honestly feel is the mark of a good doctor. She has sent all of his latest records back to Dr. C, and we will see him on Tuesday. Yes, that makes 2 trips to Houston and 2 trips to Dallas all within a month! Whew!
Our current GI doctor, Dr. S, did want us to go ahead and see the surgeon who would preform the surgery if Dr. C seconds her opinion (which I honestly would be shocked if he does not agree--it seems that these motility specialists run in a pretty tight circle, attending the same conferences, and sharing similar treatment options). The surgery that we are looking into is the cecostomy. This will provide us with another route to administer the enemas. This will not cure him or take away the constipation, but it will give us an easier way to wash out his colon. I believe it will help with quality of life. This problem does not seem to be going away any time soon, so we want to do something to make it easier to manage. We will let you know how the appointment goes.
I really liked the surgeon that we met with. He does all the colon oriented surgeries at Children's, and he was very helpful in answering our questions. He is going to go ahead and schedule the surgery, even before actually getting the second opinion, in expectation that Dr. C will agree with the procedure. Check back next week for an update on all of this.
In other news, Beckett once again got over-heated today. We were outside in the late afternoon for about 30 minutes when he started panting, fussing, and getting very lethargic. When I took him inside, I took his temperature, and sure enough, it was 103.6. His temperature spikes so quickly. His body does not seem to have the typical ability to regulate temperature. Yes, most people would be hot after being in the Texas sun, but I don't believe most would spike a fever like his. This is the second time in the last two weeks this has happened. It is not surprising that he would struggle with regulating his temperature, as we have seen signs of this in the past and it does go along with some of his other troubles, but it is a little overwhelming. Here we are, living in (the great state of) TEXAS, where you break a sweat just walking out to the car. (Ya'll know it's true) And our child is near passing out and it is not even June. Feeling a little overwhelmed. We are looking into getting some kind of cooling vest for him. We will also need to do a lot of indoor activities throughout the summer.
Thanks for all of your kind words and encouragement after the last blog post. I really appreciate it. Thanks for praying.
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