CHOP Main campus Day #1

     We are back. 

   They transferred us to the main campus in Philly yesterday. They determined at KOP that they wanted him to see neurology to look into his movements. He works himself up and pukes and he also burns a lot of calories. They also wanted to look at the possibility of a j tube for feeding (which goes straight into the small intestine). If he needs a j tube, that procedure has to be done here. To be seen by GI to determine if he needs a j tube has to be done here in Philly as well. They may also do some more tests which they couldn't do at KOP.

    This is now looking like two more weeks here.....or something like that. My mom is coming and will be able to be here at the hospital with me, but Brad is now back in Lancaster for work. He'll come out on the weekend. But it's hard for him to be away knowing that it's not easy at the hospital. 

    Today I spoke with OT, PT, neurology, GI, hospitality, rehab medicine, and some other docs. They came in to look at and feel Leo. These people all come together and talk and the attending doctors here will let us know the plan. They bring everyone's plan and input to us and we decide from there. Right now, GI wants to wait a couple of days to see how Leo responds to the medicine (to help his stomach empty). Depending on how his feeds, weight, and the pukes are on Thursday, they will reevaluate. The next step would be an endoscopy on Friday. 

    We could pray that Leo's pukes would lessen, he'd eat and poop well, and gain weight consistently. Then maybe we could go home and won't need all the other stuff....God could do it.

    Neurology is upping his medicine that works to calm his movements. Rehab medicine may give some input on other medicine or methods to address his movement (it's basically the constant motion). 

    His night feeds have been getting better and his pukes less frequent. Please pray that he could sleep through the night. I really want him to be able to just sleep. And me. 

    These things feel very difficult to us right now:

Being apart. Being back at main campus (not good memories). Interrupted nights. Lack of timeline. Information overload. Unclear steps forward and a lot of trial and error. Communicating to docs and nurses. Eating well. Getting out of the room. Staying in the room. 

Would you please pray for these with us?

Also! Leo has been adjusting to a new formula, but there is a shortage so we are not sure how to get it supplied to us when we leave. We really don't want this to keep us here and don't want to switch his formula again if we found one he can do now. Can you pray that we can find some formula?

    The Lord is our strength. One day at a time. This is hard, but it's what God has called us to. Let's see what God does.