Quick Update

Thank you all for your prayers. We really do appreciate it.

Today we had a visit downtown at TCH, and I must admit that it did not feel very productive. I am not sure exactly what I was expecting to happen, but I guess I was hoping for more action. This is disappointing to us as we are so ready for relief for our little man. He has lost a couple more ounces and is quite irritable. I know ounces don't seem like much, but when you are a little bitty failure to thrive kid the ounces all matter. We started adding Duocal (a powder that adds calories to food) to his formula around his first birthday, and they now want us to add it to all of his foods. I think it would be great if it helped, and we hope that it does, but what tends to happen is that he eats less. It is as if his body has an internal calorie counter. And when you increase the calories per ounce of his milk, he just drinks less milk. So we will try adding the Duocal to his purees and see if that helps. Hopefully, it will be successful.

As for the c.diff, we will continue treating with antibiotics. You wouldn't believe how difficult it was to find the medicine this time. We live in such a big city that you would expect a perk being easy access to necessary meds. Not the case on Friday evening. None of our go-to pharmacies had the right chemicals needed. His medicine has to be compounded since he is a baby so the pharmacy has to be a compounding pharmacy, and it has to have the right supplies. After 4 hours and the help of Walgreens, we found someone in The Woodlands/Montgomery that could make it for us. It was a 51 minute one way drive! Thank goodness for Mickey Mouse Clubhouse and a DVD player for a rear-facing carseat! We are now searching for some other possible solutions as the last 8 rounds of antibiotics have not taken care of it for us. I have been in contact with Cincinnati as well, in hopes that they might have some solutions. I hope to hear more from them tomorrow. Beckett had to have an irrigation done last night to help clear the stool out of his colon. His intestinal motility disorder just really compounds the battle with c.diff. His dose of Senna (ex-lax) has been bumped up once again in order for him to have a daily bowel movement.

The main thing we left our GI appointment with was a cardiology referral. So, to cardio we go. Sometimes, it feels a little bit like everyone is just trying to pass him off to the next guy. This type of failure to thrive is a symptom of heart problems. He also does have episodes of turning blue around the mouth, so they felt it was warranted to send him to cardio. He had an echo cardiogram done when he was 2 months old, but they want to re-check. He also had a normal EKG in the Spring. But they want to be sure nothing is being missed. That appointment will not be for a few months as it takes a while to get in, and there is nothing "urgent" about his case (no murmur, etc.)

I have been in contact with our wonderful pediatrician this afternoon, and she is working on getting things moving a bit faster for Beckett at this point. We are very thankful for her and how hard she works to help our little man. We expect to see a neurologist, endocrinologist, geneticist, and cardiologist this Spring.

Thank you for your prayers for our sweet little man! We are so thankful! Thanks for checking in on us! Hopefully, the next post will be a more positive one! :)