Saturday, May 14, 2011

A day in the life...

Henry was up four times last night. A typical night. Sometimes he's up more, sometimes he sleeps through the night, but I can usually expect to be up with him at least twice.
He woke because of air in his stomach. I vented, and vented, but he still vomited. It's a difficult thing, to assist vomiting in a child with no understanding of their body. He retches, and sounds so weak. It's like a reflex. His body just does it. But then he gets upset because it hurts, and fights my attempts to minimize the mess... so, it's unpleasant and messy...

I won't say that I have gotten used to the vomiting. But I will admit that I have gotten better at managing it. I almost always have a stack of receiving blankets to catch and absorb whatever he throws up. The receiving blankets are usually warm, fresh out of the dryer... Thankfully the washing machine just needed a break and a visit from the repair man. It's been working well since he tightened a few bolts and informed us that it would be too expensive to replace the parts that are wearing out. A new machine is in the future...

We have been doing research, networking and attempting to learn more about Henry's Gtube. We're learning a bunch about how other parents deal with the issues of vomiting and formula and new products.

He heard about the Farrel Valve bag from a Facebook Page. Feeding Tube Awareness is full of moms and dads that have been doing this gtube thing for longer than we have. They have also been using other feeding tubes.

A Jtube could be in Henry's future if we aren't able to minimize the vomiting. If we can't get the Farrel Valve oked through the insurance, we have to look at other options for getting him what he needs. Hid GI doctor hasn't used the Valve yet, and was hoping to get it oked and have us give him feedback so that he can determin if other patients might benefit. My hope is that the insurance sees that we need it, but if they fail to provide for Henry, we may be able to get our Doctor to contact the manufaturer for 'samples'... But that's all conjecture. The Jtube is another surgery that connects another button to the small intestine. His formula would bypass his stomach all together. He would still need the Gtube, to administer medication and water and for venting.

So, we are slowly adjusting, learning new techniques and attempting to make Henry as comfortable as possible. We will have issues with the van, diapering and the need for a hospital bed in the next year, but hopefully, we will be connected to the right people, and institutions that can point us in the right direction.

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