Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Thursday, May 27, 2010

Are we there yet? Are we there yet???

It's been a busy week. Joel is doing so good!! His methadone/ativan wein was started back up a couple of days ago, and he's responding amazingly from his trache....(yes, I know trach doesn't have an 'E' on the end. I don't care, it doesn't look right spelled that way.) His amiodarone dose was lowered last night, and with his heart acting the way it has in the past, I'm a little nervous. Hopefully he'll surprise me, and we won't have any weird stuff happen. He's gained over a half a pound in the last week. Adam and I have been super busy finishing up our training for Joel's care. It's a little intimidating. I know that we'll be just fine, and we won't allow ourselves to be prisoners in our own home...but for the time being, I'm waking up in the middle of the night reminding myself of things I 'can't forget once I get home.' HAHA The life of a mom, right?

So, in the next couple of days to a week, we'll be working mostly on his feeding & the vent issue. Most likely, he'll go home with a feeding tube placed in his tummy. Yesterday he had a procedure done to decide whether it will be placed into his stomach, or his small intestines....Joel has pretty bad reflux, which is why we're all leaning more toward the lower tube, called a GJ tube. It's possible that Joel will get his feeding tube tomorrow. We'll see.

Here is our only issue right now, and one that needs prayer. The vent. Because we live in a small town smack-dab between Seattle and Portland, we can't seem to find a vent company that will supply a vent in Chehalis. Care Medical said yes at first, and then changed their mind. This completely baffles me. No doubt there are other trached kids outside of large why the problem? The discharge coordinator, our social worker, and I are working super hard to figure it out. We've called every company we know of in the state of Washington. This can literally keep us in the hospital until we get one, and we have 6 nurses waiting for work....please pray that the vent and nursing staff fall into place quickly. Our goal is to be home by Connor's birthday on June 17th.

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