where to go from here

Tuesday Luke's belly started acting up after not draining his G tube all day. Wednesday it turned into the Bad Belly. He had a xray Tuesday night which looked essentially the same as the one a week prior. With him not having anything in his feeding tube or by mouth you would expect it to be improved. Surgery and GI were consulted Wednesday as his belly was big, firm, and painful.

He had a test where they put barium through his G tube and did multiple Xrays to see if it went all the way through. It did so there was not a complete obstruction. Until he started to poop again I thought for usre he was headed to the OR and that he was obstructed. It was Christmas eve and I definitely didn't want him to have to spend Christmas in the PICU. It certainly made me more thankful for being on the floor for Christmas Day. If we couldnt be home for Christmas, being "home" with the nurses and staff Luke has spent a large majority of his time with the past 4 years is where we want to be. Everyone cares about Luke and our family and we are very grateful for that. The nurses and staff have become like family over the past years and have seen us in the low moments and held our hand through it all.
Some very special people made Christmas special and wonderful for Luke and the kids.

Gifts sent from loved ones back home

this singing Peaunts hat was a hit!

Boy Scout Troop 76 did a great job cheering Luke up after a tough day. He was so touched they sent out all these Christmas goodies. Boy Scouts is the one thing Luke does that makes him feel like a "normal" kid and the guys are so great at accepting Luke the way he is.

Christmas AM Luke woke up at 315 (I didn't think he would get back to bed!) and then again at 7. It was a long two and a half hours until the rest of the family came at 930am!

Operation Santa was pulled off at 1am. An amazing group of employees at a local Pittsburgh company made our family's Christmas amazing. 

Elijah liked the paper more than anything else!

Makayla put her new dress on right away.. perfect for Christmas

Gregory has been having lots of fun with this.. the hospital atrium is perfect for flying a remote control flying quad copter.

Logan loves chasing people with his remote control bug.

Ronald McDonald House had some great groups come on Christmas. Christmas night there was movies abd games.

The best medicine is being with family.

The girls seemed to be getting colds so they have been staying away .

Building Legos with Logan

Talking to me on the phone while I'm home working.

We seem to be at a tough place trying to figure out what Luke needs. On Monday the GI, Surgery, and lung transplant doctors will sit down with me for a meeting to decide where we go from here. It has been over 50 days since Luke has been able to eat. His intestines seem to be getting worse rather than better as time goes on. At this point he is completely IV nutrition dependent. 

Their are many issues I am concerned about.. logistically taking home a 13 year old child who has eaten all his life and tell him he can't eat anything is tough (never mind the 6 other children eating in our house, smelling the food cooking, etc). Also the pain he is experiencing every few days and the belly blowing up and retching is challenging to handle at home and more importantly challenging to know when it is a true surgical emergency of a complete obstruction. Taking a child home on long term IV nutrition greatly increases his chance of a central line infection which he has struggled with in the past. 

What is the consensus of what is causing all of this. Is there something surgically that could potentially help, is it worth looking for scar tissue? Medically we seem tapped out. Is it worth revisiting a trip to Columbus for motility studies? Any other tests we should do? What is the plan once home to manage the Bad belly episodes and to potentially get him back to feedings.

Thanks for all the prayers. Thank you to everyone who has helped with our Ronald McDonald House stay, for the gift cards to help make Christmas special for us, and the support and love. Some of you have done it anonymously and since we cant personally thank you we want to here. Thank you to all those who provided dinners to those at home in December. Glen and the kids who were at home raved about them. We love how so many of you have different ways you help. Some people have the gift of sending an scars for 34 days straight, some for sending little care packages with things to brighten Luke's day, some to help financially, some to cook and feed those at home, some to pray for Luke and the rest of the family, and many other ways. We are deeply thankful for all of you 

I have opened the Take them a Meal schedule to include the first two weeks of January for anyone who would like to help in that way.

http://www.takethemameal.com/meals.php?t=JXHS5863

If you go to the main site it is our last name Maeding and password is Luke 

Tomorrow I head back to Pittsburgh and Glen heads home with the boys. I will return on Tuesday to work the holiday. So thankful for downloadable books from the library to make those long trips across PA more bearable. 

Please pray that Luke doesn't get the cold the girls have or any other respiratory illness. Right now his lungs are the best thing going for him.. we want to keep it that way. Please pray for us all as we travel back and forth. Please pray for us and Luke's medical team as we make decisions on where to go from here and what is best for Luke. Please pray for all of our strength.. it takes a toll on all of us in different ways.