a photo journal of Luke's day

Luke's morning usually starts earlier than he would like with medicine, vital signs, and sometimes doctor visits.

Some baby cuddles first thing in the am.

"Smoke Medicine" as Luke calls it (this helps the mucous in his lungs break up)

Today is port needle change day and power shower day. He has to come off his IV fluids.

This is the needle after being taken out of his chest. It is 1 inch long and goes straight into his chest into a hub underneath his skin. The hub is connected to a catheter that snakes through a major vessel into his heart. He can get IV fluids and nutrition though it as well as blood draws.

Off to the shower (no pics)

New port needle in and dressing in place.

Fresh clothes, sheets and blankets!

Hooked back up to his IV nutrition, IV hydration, J tube feeding , and G tube draining bag.

Now off for something special.. a scavenger hunt of super hero's throughout the hospital. His Child Life Therapist creates them for him. Don't tell him but this is a great way to get him to do lots of walking!

Off to the lobby after getting his first superhero on the 6th floor.. oh yeah and making a library stop borrowing a few books and movies.

First clue leads him to the Sibling Center

Second clue leads him to the gift shop

Third clue down the long hall to the parking garage

Found it on the Children's hospital Lego display!

Short rest to look at the snow.

The next clue leads him to the second floor at the Toyasaurus.

Pit stop at the Pop Stop for a milkshake on the third floor

Scavenger hunt completed after finding the last two on the 7th floor.. prize is an iTunes card to get some music for his MP3 player.

Now onto PT

Only knlocked over a bunch of stuff off his bedside table once throwing this ball.

Daily weights done

Now onto school. A long day of math.

Stringing his new Beads of Courage Beads for the last week.

And just like every 13 year old, some days have some rough spots. This one involved not completing his work as he had reported when I was away. So some of his normal day things didn't get completed. Even though you are in the hospital and have all the hospital stuff to deal with, you also have the normal kid stuff to deal with. if a routine is not kept and expectations adhered to the transition back home is even more tough. And this has been three months, if I let Luke do whatever he wants in the hospital (which would be video games 24/7) he has a lot of catching up to do for school when he gets out. It is important for his mind and body to have a normal kid routine... Which brings with it the normal kid issues to (on top of the medically fragile, in the hospital a lobg time separated from family kid issues)

Reading is something that helps Luke when things are tough. 

Then big news. GI came in and said Luke could have some reall easy stuff now, even before he gets off TPN. It was decided a half of a piece of toast would be what he could have tonight. He was thrilled!!

It tasted so good!

But then less than 5 minutes later... Retching, belly pain, and feeling very yucky. He cried as it was so disappointing. He feels like he will never get to eat again. 

Pain medicine, anti nausea medicine, and his melatonin helped get him to sleep.

So back on his oxygen and pulse oximeter on...

Lights out

5 steps forward, one step back

Overall Luke seems to be responding well to the increased dose of octreotide. He is tolerating 1/4 strength formula feeds. We have slowly increased over the past week + and he got all the way up to 60 last night thenfelt sick. U was backed down to 30 after holding his feeding for a while and seems to he doing good tonight.
this has been a crazy week. I worked Saturday then Tuesday and now work Friday. So in 7 days will have traveled the entire length of PA 6 times.

What has been going on the past 10 days in pictures

 Makayla looked like this one day (pit stop at a turnpike rest stop oon a trip hone with Mommy)

 the next night 103.8 fever.. flu swab was negative but she sure looked like flu. We all started Tamiflu to protect Luke but we're able to stop it after two days when her flu swab was negative.

Luke was so happy Gregory came to be here with him. Gregory had his orthopedic appoiappointment here. His muscle literally ripped a chunk of bone off his hip when he makmade a shot fell to his knee and hyperextended his hip. Six weeks no sports.. for Gregory it is like a lifetime. It is going to be a tough 6 weeks.

I am so proud of Luke do how well he is doing his schoolwork right now. He definitely is in a routine and following through. I cannot tell you how much of a struggle this was Oct and Nov.. just praying once we get home the routine sticks.

puzzles

9 laps around the unit everyday

A HUGE day for Luke was last week when I was at work. He was cleared of his VRE isolation. VRE is an antibiotic resistent organism that lives in your intestines. Last June we found it in Luke's blood when he hasd a blood infection. He has needed to be on isolation whenever in the hospital since then. Isolation is so hard.. it means everyone wears gown and glows, dogs can only visit at the doorway , no going to the library, no going to the large playroom on the 6th floor, if he goes to the floor playroom it has to be at a certain time and then the playroom has to be cleaned, and no wandering the halls or going to special events. He was so happy! His nurses and Child Life Therapist surprised him the Day he had hid third negative which clears him. Now he can go to the library, the special events, and walk around the hospital.. oh and don't forget the pkayrooms anytime!! And today one of his favorite dogs, Ike (a chinese watercrested hairless dog), came and sat on his bed with him.

  He had his cell phone because he called me right away.. he was so excited.

And then Kyara went down... 103 fever.. she also was swabbed for flu.. nope not it. No strep throat either. Took her a few days (Makayla was less than two days of being real sick) but she weathered it well. Not so happy about the mask though.

Makayla demonstrating how "we do elbows" now to keep the germs off our hands (by pushing the elevator buttons with our elbows).

race cars in the hallway

Teaching Elijah video games

An amazing friend, Naomi, came to visit. The original plan was for me to visit her in FL where she was spending time with her mom and sister. Then the kids started all falling apart. So my weekend of respite with her during her respite time ending up needing to be tweeked. Thankfully I hadn't bought my ticket yet so we changed plans and she came here for the weekend. I'm thankful Florida is one of those cheap destinations on the East coast to fly in and out of! It was way too short a visit but we had a wonderful time. The kids were also really excited to all get to see her. Naomi runs a home for girls in Guatemala. All of her girls have significant special needs and get amazing care. Check her out at Treasures of God Children's Home on Facebook or at her blog http://www.treasuresofgod.org

If you have a heart for Guatemala or special needs orphans definitely consider supporting her and her girls!
 we hadn't seen her for a year and a half (except on Skype) so it was a shock for to see how much the boys especially had grown up!

poor Carline was sick (we had fevers slowly go through all the girls in our family) and we are praying Naomi doesn't get it.

 Still plugging away at school.

So thankful our children take the 6 hr trip in stride!

Facepaint after the dance

Tonight Luke went to his first dance. Pittsburgh Childrens always has amazing family life programs. He was so excited. I was driving back across the state so he went all alone (well not really alone but no mom). He had lots of fun as you can see.

 Hands down Luke has the most amazing nurses. If it weren't for his nurses there is no way I could go home and work. Here he is practicing with his nerf gun as one of those amazing nurses sees how much those nerf darts hurt (thankfully not too much). There are no words for how much Luke loves them and they are literally part of the family. They know just what Luke needs, care for him incredibly well, advocate for him amazingly, and I thank God everyday for them all.

Luke continues to have a great time seeing all the pictures and mapping them on his US and World map of his Show Luke The World Facebook event. He has pput over 750 stickers on his maps marking locations of where people have posted pictures of. Thanks to all those who shared his event page. We continue to pplug away at finding all the spots. He loves seeing the pictures and clicking "like" on the picture once the sticker is on the map noting where that picture is from.

We continue to be so incredibly thankful for all who care for Luke and our family. All the staff at Children's. Employees all throughout the hospital all make this much easier on our family. From the woman in the caffeteria the girls visit everyday, to the housekeeping staff that check in on Luke each day, Child Life staff, library staff, Luke's schoolteacher, former residents who cared for Luke, of course his doctors and those amazing nurses I talked about. Ronald McDonald house is literally our home away from home. The staff there and the group's that come in to cook dinners almost every day. 

Today's drive back wasn't so good with the snow. One highway we take was shut down in two places due to accidents. Praying for safe travels tomorrow as I head back to work. My parents will be heading to FL for a well deserved vacation and visiting family on Saturday and will be back in 3 weeks. Glens mom will be coming out from CA to be with Glen and the kids back home during that time. His dad will join in at the end of those three weeks. 

Please pray for our continued strength through this time. Life goes on even though your child is in the hospital. It is challenging to work while your child is hospitalized. Each child processes and deals with it differently and of course they have had some of their own health issues. 

We don't know what the long term plan/outlook is for Luke right now. We are taking things one day at a time. We are thankful for all the good things that have happened in the past 10 days!