belly taking its good ol' time

Thursday Luke seemed to be doing pretty well. It was decided he would be able to have clear liquids and knot drain his belly. He didn't drink anything (so there is a good sign) and before I left he felt sick so we hooked up a drainage bag to his stomach tube. Initially it looked like it should then dark green started coming out.. it shouldn't be dark green. His surgeon came in a short while later and to quote him, "This is disappointing." Overnight he drained more than half a liter out. It was harder to leave knowing things took a step back. I finally left after dinner and drove through snow across the state of PA. At midnight I arrived close to home and decided to run to Wal-Mart and get Logan ling underwear as he is camping with Boy Scouts this weekend. He is so thin and always cold it was the least I could do since I have been in Pitt for 10 days now.
I arrived home close to 1am. Of course over a week's worth of mail called me as I went in and saw it stacked up.. So I went through it all and sorted what needed attention/bills to be paid and what I could file for later.. of coure there was also a big pile of what needed to be recycled. I collected a few things that I wanted to make sure to take back with me (it was a lot warmer when we came out compared to now). Then I finally went to bed.
Friday I worked and . Another eating in a hospital caffeteria day.. that gets old and thankfully my friend Katie (Luke's friend Alex's mom) was working . She knows all too well how it is living in the hospital so she brought me a bag full of different fresh fruits. I can't tell you how welcome that is! I ate some and brought some back with me. That evening Glen and Gregory stopped by while they waited for Carline to be done with her Youth Theater rehearsal. I called at 4 am whto see how Luke was doing and his nurse relayed this story. She had just gone in to his room and he woke and said, "What are you giving me?" She said , "Oxycocone (his pain medmedine). His reply was , "Thank God and Jesus Christ." Then laid back down and went to sleep. Often times when he is in that time where he can't get more pain meds he will pray out loud to Jesus to help him get through to the time he can get it. Sounds like there was some of that praying going on before the nurse walked in. He did have a better day overall.
Saturday AM I arrived home and was able to spend time with Carline and Gregory (who think being one of two children is very nice and they could definitely deal with that all the time... ). I gathered more ththings for the trip back , ateGlens Saturday AM pancakes, and packed up the van. Glen refilled my washer fluid and steering fluid and I got to the bank just in time to deposit some checks and get some money for the time in Pittsburgh.  I talked to Luke's nurse prior to leaving and he was now allowed to eat a soft diet. By the time I got here in the evening he had had a half a cup of yogurt and a half a cup of pudding. Tonight his belly is draining but it looks just like yogurt and pudding coming out.. that is good it is just those things but he had the yogurt at 11am and 12 shsrs later it is still sitting in his stomach.
The surgeon called me right before I left to update me on Luke but also to let me know the pathologist called him in the evening to tell him Luke's intestine biopsy was abnormal. There are two types of nerves in your instestine and Luke's small intestine has very little of the one type. This would be something that was like that since birth. The final report isn't out  but I am hoping to talk with his GI on Monday about it. I am not sure what it means for treatment or what to expect long term especially since it was there since birth. But it may give us some answers as to why his intestines behave the way they do. Or it may be like his lungs and we have abnormal findings but doesn't give us a name of what he has. It also may not be all the reason his intestines do what they do (after all they did find the thick bands of scar tissue which we thought explained the 15 episodes of gut shutdown).
Luke remains on oxygen though a lower amount. When his belly gets full because things aren't moving he works harder to breathe. He still is on TPN (IV nutrition) as well. I am encouraged he is making small improvements and more hopefully we may get home this week.

Luke has been doing much better with walking. He walked 7 laps today. This is him and his nurse Anna.

Snow in Pittsburgh before I left on Thursday.

 The girls went to the Medical Play party Thursday.

Wednesday night Kyara had a sleepover before I left on Thursday.

Gregorys last soccer game of the season is tomorrow. It is tough on the other kids when I miss something special of theirs (Gregorys birthday is the 20th too) because I am in Pitt.