Yesterdays meeting went well. The conversation was difficult to digest as it would be expected when you discuss your childs body being tired. Over the past few days there has been lots of conversation with many different specialists with not much to offer to fix his struggles. However, now that Ive had time to think about it, I already knew all about it. It still is hard to hear. It was mentioned that for all we know Calebs body could be full of tiny bone fractures causing him pain. Calebs body may not want to be fed everyday. Calebs pancreas shows evidence of chronic pancreatitis from all the years of its struggle. None of these things can be fixed for Caleb. We cant fix things but what we can do is support him. He has begun receiving iv therapy to assist his bones with absorbing minerals which he will receive every six to eight weeks. We have begun giving him vitamin D, calcium, and magnesium supplements. Both of these interventions will support Calebs bones to be as strong as they can. We have decided that Caleb could benefit from utilizing a Buprenorphine patch for pain, providing him continuos pain relief. This will decrease the chance that Caleb is living his days in pain. We have also decided that Caleb will not be fed formula everyday. No longer a constant struggle and stress trying to push in a certain number of calories because this is what a textbook states he needs. We will still give him something, water or pedialyte, both of which are easier on his gut on his off days. How does a mom handle this information? How does a mom accept this is whats best for your child? All while they should be hanging out with their friends, getting their first job, and bickering with their sister. By knowing you are doing right by your child. I have a choice to find the positive in the situation...by changing the goal to providing Caleb comfort, I know I am making his time left with us the best it can be!
Posted on: Mon, 15 Sep 2014 23:33:43 +0000
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