promising Luke a postponed Thanksgiving dinner

On Thanksgiving there are so many things to be thankful for. We are so thankful for all God has given us. We are very thankful for family and friends who have walked this journey with us. We are thankful for Luke's donor family who made a very giving decision in their time of incredible of pain.We are thankful for Luke's medical team that is right beside Luke in this journey as well.We are thankful for our home away from home, Ronald McDonald house and all the staff at RMH Pittsburgh.

Glen and the boys

Glen and the three other big kids drove out to Pittsburgh as I was driving back to Nazareth to work. We met half way across the state at a rest stop and had dinner together.  Luke was so happy they were coming for a visit.

Other happenings this week:

Luke had some special packages/cards this past week.

E-cards!

 Legos!

A card from the pharmacy staff that has provided all of Luke's meds for the past 12 years.

a remote control tarantula  this is a big hit

 ok the pizza dinner ordered by a friend back home and delivered was for the rest of us... Sadly Luke couldn't have any

more fun stuff.. bubbles that don't pop

balloons that we learned do pop

And there is that tarantula again!

 walks with his sisters

Baby time

kyara doing schoolwork

Feeling up to a trip to ritas (he had a few spoonfuls that night wasn't a good night after)

Checking out the Christmas decorations

giant tree in the healing garden

Snow has fallen a few times

snuggling

And visits from friends (this is a former Lafayette Mens Soccer team coach who got to know our boys through their Team iMPACT program. He is now at Michigan but came home to Pittsburgh for Thanksgiving). It really brightened Luke's day to see Coach Justin again.

Unfortunately this week Luke's home away from home 7A was transferred to a new floor.. now 7C. The rooms are a lot smaller which isn't a huge deal... Well unless you have 5 siblings....

One really cool thing Luke and the girls got to do was to make voice recordd cards for Thanksgiving. Luke made one for his buddy Alex.

If the sound doesn't play for you here it is on his Facebook page

 Love+Luke's=Life for Luke

Medical update

It has been another tough week. All week his kidney function tests continued to decline. This is very worrisome because we know the transplant meds are very hard on his kidneys. I am always thinking of the long term impact of these issues. Some of his pain was concerning for kidney stones, so he had a CT scan which showed no stones. His urine does have more calcium than normal so that can cause irritation.

pirate ct room

.Finally today his kidney function labs showed signs of improvement. He continues to need more fluids put into his body daily to keep his kidneys healthy.

He has had a lot of ups and downs with his belly. It was decided to switch him to a special kidney friendly formula going through his J tube. Before doing that his belly wasn't tollerating the regular formula. So we went back to just pedialyte. Tuesday night he decided to have two graham crackers with a thin spread of peanut butter. He had been off any formula or pedialyte going through his feeding tube a few hours and we thought well maybe he is hubgry and that is a good sign, let's try it.. A few hours later just after starting up the new formula he had a bad belly episode. Retching, huge belly that was firm, and lots of pain. Today pedialyte was restarted and just a few hours later once again belly pain, lots of greenish liquid coming out of his stomach tube  and some Retching. So GI has decided he will take a three day break from food/formula or liquids in his tube. Not sure if this is his belly taking a long time to feel ok after surgery or could he possibly have an adhesion from the surgery.

For now he had some xrays done tonight and will have more tomorrow. Unless it is very obviously scar tissue causing the problem no one wants to rush into another surgery. 

This is the second Thanksgiving Luke has not been allowed to eat. We have promised him that once he gets home and can eat we will have our own Thanksgiving dinner and that it is ok it isn't on Thanksgiving. 

(Please excuse the poor typing.. this was done on my phone... And it is very late)

when it rains it pours

Thursday I left Luke after the ultrasound showed no sign of abcess. I left the hospital after 7pm. I was expected to get home after midnight. I was about half way across the state on the PA turnpike and the van suddenly lost all engine power. I coasted off to the side of the road. Glen googled the message on he dashboard, found a bulletin about an engine throttle electrical issue with our van and thankfully a temporary fix was to turn it off and wait 10 min then turn the car back on. It wasn't driving normally but it got me back home. I got home at 2am.

Friday I worked. I found out because I work for a new company I do not qualify for FMLA. I will have to call out of my shift on Tuesday and I asked the company for FMLA papers (for some reason I thought it was 6mo and >1000/ hours, but it is 1 yr and >1250 hrs). Just a little added stress to not have FMLA protection... Especially if Luke is starting off on a bad streak of health.  I will go home Wednesday to work Thanksgiving and Glen will come here Wednesday. We will literally pass on the road.

last week the heater broke in our house. A kind friend from church brought over some space heaters which helped greatly in the kids bedrooms at night. Thankfully Glen was able to buy and fix the part that was rusted and broken. By him doing that we saved about 200.00.

Today I spent some time with the boys this am (carline was at a girl scouts event all day) and do things like pay some bills, go through mail, etc. I headed out after lunch. Glen changed the oil, filled the tires and tightened the connections to the throttle and gas pedal (when he took it to the dealer on Friday they said they couldn't fix it until Tuesday). The check engine light went off. It was driving locally ok. So I decided to bring it back to Pittsburgh. Well an hour and a half from our house (around Harrisburg) once again the van totally quit on me. I turned it off for 10 min then turned it back on and got off at the exit 1 mile away. It again was driving not completely normal so Glen and I decided not to chance it and he would bring me the minivan to drive out. So he and the kids drove out to Harrisburg to meet me. I did get to spend extra time with them as we all had something to eat. It was good to spend time with carline since I didn't see her today.

When I was at work Friday AM I found out my Aunt Diane suddenly died . Growing up I always thought of her as the cool aunt. When I was around Kyaras age I envied her long blond hair (as opposed to my bowl cut) and she would put makeup on me when we visited. That is enough to be cool for a 6 year old! 

this is my Aunt Diane and I when I was around Kyaras age.  You can see how beautiful she was.

I am thankful for the meals delivered to Glen and the kids as well as to me at work. Home cooked meals taste so good when you are living in a hospital! The last place I wawant to eat when I am working is in the hospital caffeteria! 

My hope of all of us being home for Thanksgiving is lessening. Luke has had blood sugars in the 300s when I was gone. His kidneys labs are getting worse not improving, he continues to struggle with not feeling well in his belly and not eating almost anything by mouth, and finding the right balance of nutrition and fluids.

back on the floor

After many medications to get rid of the high potassium Luke left the PICU Tuesday afternoon. It took longer than expected to get his potassium to normal levels. It is still being checked frequently.

 in PICU

the girls loved that the PICU waiting room had its own playroom

playing a game of Othelo

Once Luke went up to his floor he felt so much better and was so happy. There was concern his kidneys may have had enough damage they wouldn't recover (due to all the times they have been stressed). Thankfully yesterday they showed signs of healing. 

When he came up to the floor he started oozing out fluid from his incision. Today he will have an ultrasound to make sure there is no abcess.

The Museum of Natural History was back to do their bedside program. This time they talked about Rocks and Minerals. These are great programs and they always Gove the families free tickets to the Museum.

Luke getting in some baby loving.

Luke is designing a Childrens Hospital Pittsburgh Monopoly game with all of the places he goes as properties. The girls are the decorators and are decorating the middle section.

These are the girls' snow angel prints. Kyara was so excited to go out in the snow.

 Back to walking laps. Today is 6 laps.. goal is 16 (1 mile). Each day we add at least 2 laps.

Thank you so much for all the ecards! Last night Luke was getting very frustrated about still being in the hospital. He was sad and said, "and Mom I haven't even received many ecards!" So to all you who sent them it meant so much (I may have been delinquent in putting the link up!)

Luke and Kyara doing school work. He is standing up because his belly feels bad. 

Luke will have an ultrasound at 4pm to look at his incision site. If it is fine I will leave to drive across the state to go to work tomorrow. I will drive back Saturday AM after work. Next week I will have to call out of one day of work then will head back to work Thanksgiving Day if Luke is still here.

I am so thankful for Ronald McDonald House being here. It really helps Luke's healing to have family by his side. Tonight is a full Thanksgiving meal at RMH. We are also so thankful for the families and groups that come and cook meals for all 60 families staying at RMH daily. It is truly our home away from home. 

I am even less excited about going home this time since he ended up in the PICU last Sunday. So thankful for amazing nurses that know Luke well and love him lots. If it weren't for them I would never be able to go home to work. 

Please pray Luke doesn't have any complications when I am gone. It is a tough job for my mom to take care of the little ones and be Luke's only support. 

Gregorys 13th birthday is today (wow three teenagers in the house). It is always tough on the kids when I miss their birthdays or another special moment because I am here. It is tough on everyone whether out here or at home when Luke has prolonged hospitalizations. 

and back to PICU

Yesterday when I got back Luke looked so good. This am he just wasn't the same. All day he complained of leg pain, felt yucky, wasn't able to walk like yesterday, and had the bad belly.

I continue to be so incredibly thankful for Luke's nurses. They seriously are the front line of Luke's care. They are the first to know something isn't right. They are the ones who advocate for what he needs. They pick up on the little things and know when he needs something. I am so thankful for his nurse today. She has been a special part of Luke's healthcare team at Childrens since Sept 2011. Because he wasn't acti.g right she drew blood from his port and after a bit of convincing the resident ordered the labs she requested. They came back and his potassium was really high. After a meetingdeciding what to do next, Luke was admitted to the PICU to be treated and get his potassium down. His EKg (electrical conduction tracing of the heart) was showing changes.

Luke wasn't happy to be back in PICU. ICUs are hard for Luke. Right now he is sleeping and talking in his sleep... Had dreams are always a part of his ICU stays (his PTSD from transplant time/CICU time is what causes this). He was given LasiLasix (to make him pee out the potassium), albuterol in big doses/insulin/glucose to get the potassium back in his cells, and k exelate to make him poop out the potassium. They worked and his potassium came down to an acceptable level.
The plan is to go back to his floor tomorrow and have the pulmonary team manage his care. They have always in the past and even though his lungs are often the least of our worries (except preserving the health of his new lungs of course), they do a great job of coordinating his care between all the specialists and seeing Luke as a whole .
As Luke continues to prove, he is very complex and needs many specialists on board. I always have the most respect for those doctors who say we are not really sure what is goin on or even the works I don't know. After all the best doctors in the country all said it about his lungs. There are so many things that are not clear about Luke... It isn't a sign of weakness to admit that... It is a sign of honesty .
His belly isn't good today and he has only had a few sips of water. Praying that once his electrolytes get back to normal his belly will wake up some more.

 Logan camping this weekend with Boy Scouts

hmm.. this may be messy

Ok she is getting deeper into mess

yup there it is.. all over her hands and arms, all over her shirt, and all over the floor... Well some on the paper too.

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. 

Another bad day then two with improvements

Monday morning it was obvious something was going.on. He continued to work hard overnight to breathe. First thing in the AM we hooked a bag up to drain his stomach from his feeding tube. Within 5 minutes a half a liter of fluid (that didn't look pretty) came flying out. In the next 30 minutes another half of a liter came out. No wonder he couldn't breathe and he felt horrible.. a whole liter of fluid was sitting in his stomach. His chest xray showed he was not expanding his lungs... He had too much in his stomach to be able to. He slept almost the entire day.

 feeling horrible

 Monday evening he continued to feel horrible and started to work to breathe again. So we hooked up a bag to drain his intestines from the feeding tube in his intestines. Within 5 minutes a half of a liter of horrible looking stuff came out and then over an hour following another half liter of fluid. So over the course of the that 24 hours almost 3L of fluid all together came out of his stomach and intestines. That seems so crazy!  A belly xray was done and showed his intestines diwere not working. There was talk of inserting a new tube down his nose into his stomach, but thankfully that plan was aborted! Only essential (transplant meds) were given through his intestine tube and all other medications were held or switched to IV form. He was 'retching and so uncomfortable. His breathing became less labored and at the 24 hour mark there was no bacteria in his blood. His epidural had to come out as it was the fifth day in.

feeling a little better that evening after all that fluid was out of him.

Tuesday am he woke up and actually woke up. We played some board games. He did a very little bit of school. He actually got out of bed and walked a mini lap around the nurses station. He was finally looking better. He has d his cather taken out (I was very anxious to get it out so he would be forced to walk to the bathroom and start moving again). Luke was started on IV nutrition because it looked like this was going to take a longer time then everyone was hoping for.over the course of the day Tuesday what was draining out of his stomach looked better and better.  His surgeon told him he could have hard candies, lollipops, or gum. I know his intestines were still asleep because he only had one hard candy all day. Antibiotics were continued and pain medicine continued through the IV. He had to have his needle in his port changed so he even got a shower. It wasn't his usually Power Shower and it took a lot out of him but he got one.

playing star wars Trouble

Cars 2 Monopoly

 a tiny bit of school

 A mini lap around the nurses station

Wednesday again he woke up and was feeling much better. His breathing is much more relaxed . He continues on the oxygen, IV pain medication, and anti nausea medicine. Today he walked a full lap around the unit with PT. More board games and one subject of school were done. Tonight he took a second lap around the unit! Today he ate two hard candies, so maybe his belly is doing a bit better. The antibiotics were stopped since the blood cultures are still negative and he has been on them a total of 7 days. We stopped draining his stomach today in hopes maybe tomorrow he can start drinking some clear liquids.

 after his sesecond lap tonight

 exhausted

Tomorrow I have to drive home across the state to work Friday then will return on Saturday. One of the hardest things I ever have to do is leave Luke here in the hospital to go home and work. I am so thankful for his amazing nurses who know when something new is wrong and care so much for him.

Please pray there are no issues while I am gone. Please pray his intestines continue to wake up and that he does not get any infections now that he is off antibiotics. Please pray for his transition back to working his body hard to get back in shape and for his transition back to doing schoolwork. School has really been a challenge for Luke this past month and we could use extra prayers for him to get school done each day.
 Kyara working on school

Nana and Elijah getting in a nap

Makayla snipping.. her favorite activity

More snipping

the Aviary brought a painting parrot  to the hospital. The girls loved the show. Kyara especially. She is already counting down the  years until she can volunteer at he National Aviary (when she is 14).

 the girls in front row seats

Penny the painting parrot

 Makayla showing off her snake she made at the after school jungle animal program