More Sugery

Here is the update I sent our community group:

With great sadness and a eternally disappointed heart I write this update:

This morning Payson had to have his G-tube changed out to a tube that would dump his feeds straight into his intestines by-passing his stomach. They did this to reduce the risk of Payson having acid reflux then aspirating on it. It was a painful procedure because the previous hole was too small and they had to dilate it to fit the bigger g-tube. Thankfully Morphine was on board and he sailed through beautifully with little protest. Next was his trip back to the OR to get scoped by the ENT. It was a quick jaunt, but it was informative. They discovered what they had suspected, tracheomalacia, the occasional collapse of the airway. We have two options:

1. Put him on a high flow vent that allows the air to keep the site open. He would be too unstable to return home until he grows out of it.
2. Tracheotomy surgery, thus after a few weeks of healing and training they’d send him home (with nursing lots of nursing help). This would remain in place until his airway became strong enough to handle its own weight, which should be 12-24 months.

As you can imagine it doesn’t feel like we have options at all, but he is tenitively scheduled to have the tracheotomy surgery on Tuesday. Wonderful Christmas present hugh? They don’t seem to think there will be long term affects of this surgery except for the scar once the trach. is allowed to heal over. Once they perform the surgery they might be able to switch the G-tube back to the less invasive button we are used too, but that is yet to be foreseen. Todd and I will have to go through intensive training for the tracheotomy and even though we will have most likely 18 hours a day of nursing care it will still be a challenge. Not sure what to expect for us as far as caring for Payson. I already feel tired and overwhelmed. Already, the doctor has warned me about the toll having a stranger in our house many hours of the day…no privacy, no family time. He said it can be daunting task to have someone here. It was also mentioned that we need to make a room, separate from ours, that Payson can be in. Preferably, one on a separate floor from all of us b/c of the noise and medical care…Apparently, the suction is very loud. One that can host a nurse, baby, all the equipment and supplies. Our house is very small and the nursery is attached to our room, (you have to walk through the nursery to get to our bedroom), so we are scrambling to come up with another solution. We have talked about doing the basement in the future, but aren’t financially ready/stable enough to begin doing the project immediately. We also, can’t do this while Payson is at home b/c of the dust and yuckiness that comes with French drains and basement finishing. So much to process, so disheartened, so sad…All I wanted was to have him home for Christmas!

I don’t even know how to tell you all to pray, but please do. After surgery Todd and I will maintain a 24/7 vigil for the first couple of days. We are so torn about how to have Christmas here and then with him, (the kids are not allowed to visit at all). We are even torn about the snow storm. Does one of us go down and wait it out with Payson, missing out on the snow fun/time with the other kids or do we stay home and ride it out here. What to do what to do.
It just seems to go from bad to worse.