Today was sort of a big deal.  Realizing that we are in this for the long haul it has become increasingly apparent that we needed a longer-term feeding solution. The tube in the nose was clearly causing Evan discomfort and it would have to be swapped out regularly causing even more grief.  The hope is that through intensive therapy, Evan will re-learn how to swallow and eat on his own.  Until then EVERYONE recommended a PEG (percutaneous endoscopic gastronomy) which is a tube through the skin straight into his stomach. Despite how crazy this sounds to most of us, it is actually a fairly simple procedure which they perform right in the room (with a little extra equipment rolled in).
Although simple, they treat it like surgery so Evan had to have an IV line put back in to keep him hydrated since nothing can go into his stomach for the 6 hours before and 24 hours after the procedure.  The problem is that Evan could not receive any of his oral (meaning thru the tube) medications during this time.  This included his calming drug of choice, the chloral hydrate, which we and much of the staff learned today is no longer manufactured in rectal form nor in IV form.  So Evan was basically on his own without a way to sedate him for the better part of the morning.  This made the hours leading up to noon quite unpleasant for Evan and for us watching him suffer.
At about 11:30 all of the necessary staff and equipment began to arrive in his room.  By 12:15 we were asked to leave and within about 20 minutes they were done and we were back in with Evan. The report was that everything went smoothly other than Evan refusing to open his mouth so that docs had to pry it open.  The sedation meds used to knock him out during the procedure wore off around 2:30 and pissed off Evan was back, so they started him on morphine.  It took three hours, three doses of morphine and some Tylenol with codeine to finally get him back to a restful state.
When he first woke up after they inserted the PEG, he went right back to swiping at his face. Funny thing is they had removed the nose tube and tape while he was asleep so there was nothing to swipe at.  Fairly quickly he gave up on the face and then to our surprise figured out where the new tube was and started trying to get to it.  Just like yesterday we think this is a good sign that he was able to connect a localized pain and deliberately moved his arm to get at it.  It is now about 9pm and he is still sleeping.  The plan is to keep him as calm as we can overnight.  Early tomorrow morning they will be able to begin feeding through the PEG and remove the IV line.

Tummy Before


After

Tummy After


So right now as you can see in the after photo, he just has a simple tube coming straight out of his belly. After 6-8 weeks of healing they will be able to replace the tube with a Mic-Key button. This is a somewhat flush port with a cover which you just pop open like a gas tank when it’s time to feed him and the rest of the time it is closed and he can do anything he is capable of including laying on his stomach and getting in a bathtub or pool.