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.

Hitting another pothole on the road of life

Though we have had things carefully planned out for spending Christmas in Pittsburgh, we had unexpected events this weekend. Caroline and I came home Friday night so she could do her last two performances with Pennsylvania Youth Theater and I could work Saturday. She performed Saturday at the first show, then watched the second show before her cast party. At 730pm I received a call from an EMT that Carline was being brought to the hospital because she had a seizure. If it was going to happen, it happened the best time possible. I was working at the hospital, not 6 hrs away in Pittsburgh. In the ER there was talk of transferring her to Philadelphia. That is when I had a bit of panic. We couldn't have on child in Pittsburgh and one child in Philadelphia for Christmas. Thankfully a very understnnding ER Attending and Resident were on  that night. I explained the situation and they allowed her to.go home at about midnight so I could drive her out Sunday AM to he seen here in Pittsburgh.

Carline saw a doctor today, had some testing and will have more testing and appointments through the week. This was totally unexpected but we are thankful for all those who are helping make this situation  easier.

Today my mom, the girls and I ran to Target to get some food  for breakfasts and lunches. While there a little boy came and gave Makayla and envelope. In it was 10.00 as an act of kindness. There was a note encouraging us to "pass it o.." makayla opened the envelope and was very excited about the 10.00 enclosed. Moments later we saw Peppa Pig shirts on the clearance rack. We know if a little girl who has been here in the hospital, states away from home, and who lives Peppa Pig. Her grandmother was trying to find Peppa Pig things for Christmas. I asked Makyala and Kyara if they thought we should use that money for the shirts for a Christmas gift for that girl in the hospital. I will be honest I wasn't sure how the girls (4 and 6) would respond. The toy aisle was a short way away. But they both right away said yes. Caroline and I tried to not act too surprised but NY heart felt so good to see then say yes without hesitation. I think maybe because that young boy gave this to Makayla it mag have made her understood kindness in a different way.

Luke has been doing pretty well.. of course nothing has gone in his belly or mouth for a week now. Tonight he wanted to stop draining his belly so we did that. His belly is big now and more firm. Not a great sign but we will see what happens. If he starts having pain we will drain it again. Tomorrow the plan is to begin feeds at a teaspoon an hour dripping into his intestine (just pedialyte).

I want to thank the 10 people who made meals this month for our family back home. It was a huge help. I want to thank all of those who sent care packages and cards to Luke. I want to thank all the nurses nd PCTs here who care for Luke when I am gone.. especially because he likes to "blow up" the call bell while I am gone. The button gets worn out during those 48 hours!There are so many who have made this all a little easier. All of those acts of kindness no matter how big or small they seem lift us up in support.

This past week the girls had an amazing opportunity to go to the Nutcracker here at the Pittsburgh Ballet. Makayla Sat wide eyed the entire time and loved it! Kyara danced in the aisle during the show. 

Luke has loved the special packages that have arrived.

Here at the hospital they have had Santa's Workshops for both the patients and the siblings to "shop" at for free . They can buy Christmas presents for their family and this was a huge hit for tall the kids. They are all so excited about what they picked out!!

Dog visits are always a highlight.

More goodies

Bat man walking the hallways. He must do 9 laps a dag. He is now wearing a mask outside of his room to protect him from getting the flu. It is really bad out here.

He has been able to have private play parties in the playroom each day. That has meant a lot to him and been a real spirit booster. Since he is on isolation he can't go in the playrooms. At the end of the Day his Child Life therapist has been taking him in and closing the playroom for a special play session. Then it gets cleaned so  to make sure everyone stays safe and it is clean for the next days activities. Luke has an antiantibiotic resistant bacteria in his GI tract. It was found in his blood and is very common in kids like Luke who are on IV antibiotics a lot as well as transplant kids.

This week I think of my Godson, Corey. He was our first significant connection to Pittsburgh Childrens and transplants. I cared for him in the NICU then at home in home care nursing. He needed a liver bowel transplant and received it almost 14 years ago. He sadly passed away  10 months later.. just a couple of days before we brought Luke home from the NICU and 10 months after transplant. Glen and I came out and visited Corey and his mom a few times. He would have been 15 on December 19. I'll never forget him. Having been right there for Corey's transplant journey made us go in with eyes wide open to Luke's transplant. 

Today was Logan's 12th birthday. It is hard being here for the kids birthdays. Each child (except Luke) has either celebrated a birthday here in Pittsburgh or celebrated their birthday at home when I have been here or both. Being a special needs sibling is tough and there are a lot of days I am sure they feel like it is unfair. I am so proud of my kids for all they endure and grow to accept. They have seen things most adults haven't seen. They know about things that most kids don't. They ponder life in a way most others their age don't have to. And I know they will carry this experience with them in life. I hope it makes them more compassionate and empathetic and caring as they journey through life.

Happy birthday Logan!

 Logan at his Boy Scouts Court of Honor

Speedy Delivery!.Mr McFeely doesn't look any different than when I watched him at 5 years old on Mr. Rodgers Neighborhood.

Luke was on the telethon for the Children's Hospital Free Care fund. Always nervous on live TV... What is her going to say. He always cones through and does great!

More goodies

Recordingsongs with the music therapist and doing art with the art therapist. He is going to make an album (he already has 10 tracks) and he will design the cover with the art therapist. Love the Child Life services they have here.

Kyara recording her own song.

 Cheesehead! From a Wisconsin friend!

And these goodies.. the tarantula started it all.. now we have a rat and a snake. Luke has had too much fun with these!

Schoolwork

Museum of Natural History bedside program. Love how much the community volunteers here at Children's.

Kyara's plants from her elective Dirt class.

Makayla is adding lots of details to her pictures now. She is 4, so I think this picture of her and Kyara (6) is a future picture!?!??!

Glen and the boys are headed out on Wednesday. We will be together Thursday then I head back for 48 hrs to work. 

Please pray for safe travels for all. Pray for Carline that she is not so nervous about all that has gone on and that she doesn't have another seizure. Please pray feedings go well this week for Luke. Pray for us as a family during this time. Pray for my patience.. I struggle with trying to keep things under control and planned out all the time. So much with Luke has been out of our control, I think I try to overcompensate by makeing sure other things are under control. Saturday was a good reminder it is not for me to control. 

Again, written on my phone at a crazy hour. Please excuse misspellings, typos, and poor flow to this post.

belly just doesnt want to wake up

First the medical update then I'll let the pictures show the last week+. Luke had a CT scan done over a week ago and it showed three partial small bowel.obstruction. Surgery is not preferred now because each time surgery is done it can cause scar tissue. So we may do surgery to relieve current scar tissue and then more comes back. Hopefully with time it will improve. But it may turn into a complete obstruction so that would need emergency surgery. It also may get to a point where surgery is the right decision but not now.
there is a possibility that these are also three areas that didn't have optimal blood flow during surgery and had injury. It would be very odd to have it happen in three areas but Luke like to do thibgs rare and odd. For now it means IV nutrition. That means almost surely no Christmas dinner which is very hard for Luke to think about especially after not being able to eat  Thanksgiving dinner.
We continue to try to drip a teaspoon an hour into his intestine feeding tube but after about two days he doesn't tolerate it. He is still allowed to have liquids that drain out of his stomach tube but he isn't drinking a whwhole lot which tells me his belly feels bad. This AM his feeding had to be stopped again because of belly pain. A little bit of food would help his body not get stressed (mostly his liver). Over being on IV nutrition only. It is likely this is not going to get better quickly.
His kidneys continue to need lots of fluid via IV to keep them happy. Hie needs talmost twice the amount he should need in IV fluids to keep his labs good. We tried to turn down his fluids and his kidneys did not like it.

Good news... His PFTs were the best ever likely due to the fact we fixed his reflux. So though there has been negative fallout from the surgery, the reason we did it (to protect his lungs) seems to have been successful.

As we forsee staying through Christmas, we decided to bring Christmas to Luke. The girls decorated the tree with their own decorations as soon as it was set up.

This is Luke doing his best PFTs ever

Kyara waiting for Luke during his PFTs

The girls continued to add decorations

Kyara doing school

Luke has enjoyed board games

Luke decided he needed to make it mire of his tree (a bit crushing to the girls). Each day for his advent calendar countdown to Christmas he opens an ornament and outs it on the tree.

Luke doing school

Santa came by to take pictures, give some goodies, and let the kids know he had a special GPS that tells him where each child is (so if they are in the hospital he knows where to find them).

Makayla was so shy!

He had a special gift of a signed football from two Steelers who dropped by one day.

Last week a fraternity from Thiel College walked from the college to Childrens Hospital (100 miles) to raise money for Childrens Free Care fund. Last year they raised 30000.00! They all with cans so people can give them donations along the way. We had the honor of meeting them when they arrived and sharing how Childrens has impacted our lives. They heard about Luke and brought him a special Captain America action figure and gave him a signed shirt. What a special way for them to give back.

Luke receiving an ornament for his tree

Different groups are coming to Ronald McDonald house decorating a floor. This is how our floor was decorated. It is wonderful stepping off the elevator seeing this on our floor.

Three families came and made cookies with the kids. This was great fun!

 One day Luke decorated his tree with his almost 2000 beads of courage. The tree tipped over under the weight.

Of course we have to have some fun!!

 This is Kim. She is his Patient Care Tech and we have known her for years.. she always makes Luke laugh. They swapped wigs one night!

Luke and his transplant pulmonologist.

Another Patient Care Tech brought Luke this hat.

Making ornaments

 doing puzzles

Drags to check his spine because of his weak bones and history of vertebrae fractures

To see his neck bones they had him open his mouth.. we laughed about this one!

Smoke medicine time

One day Makayla came over to Luke s room like this.. guess she wanted to be a cat (she did this all by herself a couple of days aafter watching the Broadway show Cats on TV).. then she turned around.. guess her outfit was complete with a tail!

hmmm. Wonder why Makayla doesn't gain weight.. she is wearing more of the food than eating it!

Every year since 1970 the Penguins team comes and givisits all of the children in the hospital and gives them a toy (this year a build a bear penguin hockey player). The team bubucame by this week

bubbles!

Doing school... Notice the balloons to the left floating downward... A sign we have been there a long time

Ho ho ho

Being on isolation is tough for Luke. It means he can't go to the library, group activities in the atrium, or the larger playroom. Friday evening his Child Life therapist decided to have BINGO in the hallway so all the kids on isolation could sit in their doorways (some required masks) and play BINGO. Luke LOVED this. 

BINGO!

I came home to work and since I was working on a Saturday I brought the girls. They have not been home in about 6 weeks. They were very excited to go home for the weekend. They are not ones who usually like to go to sleep (it takes lots of reminders it is time to quiet down). I thought it was quiet after going through the mail. When I went upstairs they were both sleeping in their beds. I think they were so happy to be back in their beds they put themselves to sleep!

Huge thank yous to all who have taken Glen, the 3 older kids and my Dad a meal in the past two weeks. This has been a HUGE help! The meal schedule is found here:

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

Recipient name is Maeding and password is Luke if you go to the main page at www.takethemameal.com

It was so incredibly helpful for Glen to not have to worry about making dinner when arriving home from work. During the week the big kids have lots of evening activities on different days. Thank you so much to those who have picked up or dropped off some of the kids at their activities. That has also been a huge help! Some nights Glen needs to literally split himself in two! And some nights even with my dad and Glen driving it is very tight getting everyone where they need to be. Of course December has been a month of medical appointments which have also been very time consuming back home.

Speaking of I am so thankful Childrens will see our other kids when we are there a while. Kyara had to have some dental work done and Elijah needed to see ENT. Children's is so great with understanding and getting them seen or cared for.

For those who have donated towards our Ronald McDonald house stay by adding funds to Luke's COTA account for transplant related expenses we are so thankful. If anyone sent a check or is sending one to COTA remember for write Luke M in the memo or if making an online donation make sure it is designated for Luke (his account gets 100% of funds donated in his name. We submit receipts and they directly deposit the reimbursement funds into our bank account). 100% of your donation is tax deductible.

http://cota.donorpages.com/PatientOnlineDonation/COTAforLukeM/

If you mail anything to Luke please use the Ronald McDonald House address. We are still waiting for a card Alex mailed two weeks ago to the hospital for Luke. The mail room is like the black hole. At RMH we get things as we would at home (the same day delivered).

Luke Maeding room 1104

Ronald McDonald House

451  44th st

Pittsburgh, PA 15201

A lot of people have asked me for the above info and hopefully it helps to have it all in one place.

Glen and I also want to thank everyone for their thoughts and prayers. There are a lot of unknowns with Likes kidneys and intestines in the future. Please continue to pray for their healing, knowledge for the doctors to know how to treat the issues, peace in his heart, and strength for us all.

While I am gone Luke's night nurses facilitate Santa leaving ornaments with a little note on Luke's tree. He gets so excited about them. I am so thankful for all the nurses who care for him both the medical care they provide as well as the emotional care... That is why nurses are so incredibly important!