How is Evan?
The place for regular updates about Baby Evan

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.

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.

Sunday afternoon Evan was moved from the PICU (Pediatric Intensive Care Unit) to the regular Pediatric Floor where they handle the less acute patients with a higher nurse to patient ratio. While we were not happy about leaving the comfort and familiar surroundings of the PICU, we were lucky enough to be placed in a large private room and directly across from the nursing station.
Because the Peds nurses were not as familiar with Evan and having more patients to take care of, Evan was given more frequent doeses of the chloral hydrate to put him to sleep quickly overnight Sunday.  This resulted in him sleeping for the better part of 15 hours.  He finally woke up around 1pm on Monday and wasn’t very happy for the next 5+ hours.  He was very tense and agitated and constantly swiping at the feeding tube in his nose with his left hand.  At one point successfully pulling it out about 8 inches!  I guess it’s positive that his brain is working well enough to understand where the discomfort was coming from and how to deal with it.  They also made a few other adjustments to his meds, changed the type of formula (the new one is Kosher and won a Chef’s Best Taste Award!).

Mid-afternoon Mommy brought Alex to visit and see the new room before heading over to the family Passover Seder. I got Evan all ready too, but he had to stay here with me 🙁