I heard from genetics this week that insurance will cover further mitochondrial testing. Thankfully Baylor College still has samples from Logan. Makes the process much smoother! They are estimating 70 business days for results. If it really only takes that long, it will be one of the shortest turn arounds for results we've had so far! I hope this finally gives us answers.
Logan had yet another feeding tube issue last weekend. It was loose in the morning, meaning it was pulling away from the skin. We suspected the balloon that holds the tube in his body broke and it did. I have no idea how this keeps happening. We all work very hard to protect his tube. I could write paragraphs on all the ways we keep his tube from getting pulled!
Anyways, after a visit to the ER last Saturday, we learned that hospitals don't always have supplies. They were out of his size feeding tube. They did have the size at the other children's hospital across town but the radiologist was leaving soon and there was no radiologist at the other hospital to put it in. They don't have a radiologist in house 24/7. Big bummer! We were initially told we would have to be admitted to get Logan IV fluids until the tube could be replaced. I ended up convincing the doctor to take an X-ray to see if the tube was still in far enough. When we noted the problem at home we immediately taped it down. The X-Ray showed it was in good position so we took him home with a lot of tape and was able to feed him. On Monday the tube was sent over from the other hospital and it was changed.
Logan's surgery to have a Nissen Fundoplication can't come soon enough. At the end of March, he will undergo the surgery. The goal of this surgery will be to allow Logan to be fed into his stomach versus into the intestines. This means he will have a feeding tube that we can change at home and Logan will have the ability to absorb food and medications better. We are hoping to only be in the hospital a couple of days. Fingers crossed!
Otherwise all is well here. We just had another snow-maggedon! About 10-11 inches in one night. Thank goodness for snow blowers and husbands! The roads are still ice and snow packed as now we are moving into a polar vortex! Who hoo. I am adding a few pictures from this past week. Hope everyone is well.