Introducing... Dr. Buttons

In case you haven't heard, Landon came home on Wednesday and since then it's been a whirlwind of unpacking, getting a new summer sitter, repacking for a week at Nana & Papa's and youth camp.  Needless to say, we are exhausted and as we head into youth camp in Oklahoma, sleep is not in our near future.  I can't speak for Justin, but I think I may be using some of my afternoon free time as nap time.  Warning to the junior high girl that wakes me up should I try to get a few moments of shut eye...I tend to be a bear when woken up unexpectedly...you've been warned ;)  Too bad none of them will see this warning as they have to be at church at 6a.m. tomorrow.  Don't worry parents, I'll try to keep my biting to a minimum and just scare them off with a big growl.  Landon has been a great teacher when it comes to growling.

Landon seems to be tolerating his noctunal feedings very well and the tenderness in his belly is getting better.  In fact, we've had two nights in a row where the feeding tube extension has come out of the G-button and I haven't known until the next time to refill the bag when I find Landon laying in a puddle of wet sheets.  We're experimenting tonight with some Ouchless Tape wrapped around Landon's stomoach and back to keep the extension flush with his skin for about 4 inches and then letting it hang in hopes that he won't pull it out again.  It kind of freaks me out that I don't know how long it's been open and anything could have flown or crawled in.  OK, now I'm never going to sleep, not sure where that thought even came from. Yuck!!  Landon is also taking his applesauce with enzymes better & is eating a little better.

For those who wanted to know how it turned out, I would like to introduce you to the newest addition to Landon's bedtime friends, a bear I am fondly refering to as Dr. G. Buttons.  Thanks to a toy store like Build-A-Bear, the blowup part of a beach ball from the outpatient clinical care center at TCH, and my Mam-maw who is a wonderful seemstress, Landon now has a bear who is just like him!!  G-button and all!!  I plan on taking this to our next clinic visit because I think this could be a great training tool for young children who need to get feeding tubes.

I'm not sure if I'll have time or be able to post any updates from camp this week, so I just wanted to let everyone know that Landon's doig well in adjusting to his new nightime routine and as with just about everything, it will get easier with time.

Just a few prayer requests as we go into this week, pray for our youth group as they/we embark on a different youth camp that any of us have ever attended.  My prayer is that we will begin to work together to become a more cohesive group and that these kids will be open to anything and everything that God has in store for them this week.  I pray that they will let down their shields and allow themselves to be vulurable to each other and learn to trust & depend on each other.  Pray for the leaders, that we will be the examples of Christ that we are called to be not just this week, but in everything we do.  Pray for my parents as they care for Landon this week, unfortunately we haven't been out of the hospital long enough to get into a new night time routine when it comes to the feeding tube and my mom gets the joy of trying to work out the kinks on her own while learning Landon's medication schedule, going back to the feeding schedule of a newborn at night to add milk to the feeding pump and dealing with a toddler in his full swing with his terrible two's.  I know that's a shocker to some of you, but this little boy can throw a fit with the best of the.  This is the first time my parents are really getting to spend quality time wih Landon, so pray their time will be filled wih blessings from this little man.  I know we all feel our kids are special, but somehow Landon has a special way of putting a smile on the coldest of faces.  He is so precious and I pray that my parents are able to soak up all that Landon has to offer them despite how tired I know they will be.  Lastly, please pray that I will be able to let go of my control of Landon for the week.  The timing of having to leave him could not be worse, but I'm sure God has something to teach me through this..quit reliing on myself and rely on Him comes to mind.  Pray that I will be able to focus on the lives of the youth who have been entrusted into my care and how I can serve them.  Unfortunately, I have spent very little time with this group in the last 6 months because Landon has had a lot going on, but this week is all about them.  If you go to MBC and got a prayer band for one of the youth or any of the leaders going, I ask that you pray for them diligently this week.  Lives are changed at camp in a way that for some reason just doesn't happen on Sunday's and Wednesday's in church.  You never know what is going on in the life of that student, but God does and your prayers help more than you'll ever know.

Day7 - Thinkgs are Looking Up

I took last night off to try to get some sleep, but Landon had other plans for me.  We started a milk drip through the feeding tube last night and despite an error made in the amount of milliliters given in the final 3 hours of the night, I think Landon tolerated the feeding really well.  The problem arose around 11 when he woke up with an unusual cry.  It seemed like it was pain, so at first I thought it was the g-button bothering him, but because of his actions when I got in his bed I realized it was a gas problem.  We were not told to give him enzymes prior to the feeding, so the dietician believed that is what attributed to the gas pains.  Landon continued to wake up every few hours with the pain & just wanted to be held or to sit up.  Except from the lack of sleep which I should be used to by now, today was a pretty good day.  The pulmonary team decided it was time to take Landon off the TPN which was great!!  It finally allowed Landon to be free & get out of bed without fear of him attempting to run away & pulling out or on his PIC line. (Insert shiver) Makes me cringe just thinking about it.  By dinner time, the resident had also given Landon the go ahead to eat anything he wanted.  Yeah for no more dietary restrictions!!  We celebrated by walking down to McDonalds and getting some french fries.  I think Landon is beginning to get used o the G-tube, but he still gets very upset if he even thinks you're going to touch his belly.  I know he's still very sore & sensitive from surgery, but I really hope it's gets a little better before next week for my parents sake.  We are looking at a full 10 day stay because of the Pseudomonas, so it looks like it will be Wednesday or Thursday before we get t go home, but Dr. Ruiz, Landon's pulmonologist, has made it clear that if the doctors on the floor hear any rattling in Landon's lungs that he will not be released until that is cleared up.  Today he sounded clear, but he has had rattling off & on since surgery, so please pray that this clears up completely. 

Thank you again for all your prayers & support!!  It means so much to know there are people we can call on if we need anything!!

Yo Yo, Poop & Pseudomonas

Today was filled with good news & bad news.  I'm ready to hit the sack, so I'm going to attempt to be brief.
The morning was filled with bad news.  Due to vomitting, Landon would remain on a clear liquid diet until the vommitting ceased.  The poor boy hasn't had a real meal since about 6pm on Wednesday.  The really bad news is landon is growing Pseudomonas again.  This is a nasty bacteria that doesn't effect you & I, but is no bueno for people with CF.  Landon had a culture in mid  May that did not show pseudomonas, so we caught it early.  They will treat this with and IV antibiotic called Tobramycin.  Because of the combination of the pseudomonas & vommitting, we are looking at another 3-5 day stay in the hospital.  When we are released, he will most likely be on the inhaled form of the antibiotic which is a 28 day cycle, to make sure the bacteria is gone.

The evening was filled with good news includig that Landon is beginning to act like himself.  He took a 3 hour nap this afternoon & I only hit the morphine button once this afternoon.  He was interacting with me & the nurses.  He still stayed in bed all day, but I feel like tomorrow he'll want to get down and play, maybe even roam the halls.  This may be TMI, but Landon was very gassy this afternoon which was a great sign that everything is working properly and right when the doctor came in to check on him tonight he pooped!!  This prompted her to allow Landon to have his favorite Yo Yo!!

He was one happy boy!!  Landon was also excited that he finally got to have Pediasure in his cup.  Or as he likes to call it "chock" with a "k" sound instead of a "ch" sound.  We just love that he calls his milk that(please not the sarcasm). 

I'm so excited to have my little boy coming back!!  I did not care for the dazed & confused looks I've been given the last 2 days.  Now our next battle to overcome is Landon not being so scared of anyone coming towards his belly to replace or remove the feeding tube.

JUICE!!

Landon has had another rough day.  Mostly due to pain & discomfort.  The PAC pump with morphine seems to be helping, but Landon spaces out everytime we hit the button.  I've tried keeping it at a minimum because I'm missing his personality and actually missed chasing him around the hallways of the 14th floor.  I would take being scolded by the nurses for Landon running through the hallways any day over him being so uncomfortable.  Landon & I had visitors today!!  Kathy, Erin & Kinsley came by to see us!!

Kinsley & Landon watching the "train" and cars

When I left the hospital Landon was still clutching all the new cars he was given and did not take kindly to anyone touching them.  We are so thankful to our church family who has supported us & loved on us in so many ways in the last 2 years!!

Landon was finally able to drink some juice at noon today.  I've never seen anyone so happy & relieved to see a juice box.  He downed the juice box within 2 minutes and then requested more.  I poured him some gatorade in his sippy cup, handed it to him & within a few minutes he was out.  He was so glad to have his security blanket (his cup) back in his arms.

Justin's boss let him off early, so he arrived at the hospital around 2 and all 3 of us took a nap.  It was the best sleep I've had all week even though Justin & I were sharing the pull out couch/twin bed.  It was nice to all be together and Justin not having to run out the door to head home.

After our nap, the PCA came in and started Landon's first tube feeding.  Today was just Pedialyte because they need to see how Landon will tolarate everything.  He's not a fan of anyone raising his shirt and touching his belly right now, so he put up quite a fight when they took out the drain & put in the tube.  I'm sure the fighting didn't help with the pain, but after the tube I asked him if it felt better and he gave me a pitiful "Yes".

Justin has releived me tonight, so I get to sleep in my own bed without any interuptions which makes me very excited, but I have a hard time going to sleep in an empty house.  I have never lived alone.  I went straight from home, to college with roomates and then got married.  The rare opportunities I get to have the bed and house to myself I usually end up staying up late watching TV.  Or going to bed with the TV on only to wake up hours later to infomercials.  None the less, I'm going to do my best to be in bed before 11 tonight.  Justin will be with Landon tomorrow morning because I have some bookkeeping to do and then we'll have the changing of the guard around lunch time so Justin can go to an impromptu engagement party for one of his cousins.

I better sign off for tonight as I only have 30 minutes to switch the laundry & get things ready for tomorrow before I go to bed.

Thank you again to everyone for your thoughts & prayers!!  I will never understand how people go through anything without having the faith & knowledge that it's all in God's hands!!  They don't know the peace they are missing.

A little thing called the G-tube cont'd...

It's been a long day, but it's finally over.  Thank you so much to everyone who has been praying for our family!!  Your prayers were felt and answered.  We started the day with Landon sleeping until 10a.m.  I don't know who was praying that he slept in, but I would appreciate that every Saturday morning.  I don't think he's ever slept that late and the closest he's ever gotten to that has always turned out to be a day that Justin was staying home with him for some reason.  He always wakes up early on mommy's watch...I tell Justin that's because he loves me more and can't wait to see me & spend time with me.  Justin in turn usually tells me it's because he dislikes me more and likes to torture me with a lack of sleep.  I guess we'll never know which is true.

After he woke up, in a good mood I might add,  he immediately began asking for juice aka milk.  The distractions started immediately with the fun cart that just happened to arrive at the same time.  We happily took a container of green play-doh(sp?) and one of those funky balloon like balls with tentacles.  I thought Landon would like the ball, but he's not too sure about the texture.  We began his breathing treatments and in the middle of that one of our favorite TCH nurses and one of the child life specialists came in and joined me in the distracting.  We played with stickers, play-doh, colored, played with more stickers and play-doh, threw a mini fit somewhere in the middle and we were done.  As soon as we finished therapy Landon immediately started saying, "Mommy nak"  aka snack.  I was brought up not to lie, but I must admit that I did this more times than I care to admit.  You see when we go anywhere with Landon for more than a couple hours, I've learned to fully equip myself with pudding, cereal & chips.  So the cabinet in his room is fully stocked, but I think God will forgive me for the lies this time.  the rest of our distracted day included getting a playground pass from the doctor only to find out the playground was closed due to construction :(, luckily the wonderful volunteers pointed us in the direction of a little garden on the 4th floor so we were still able to get outside for a bit.  Then we ran many laps around the 14th floor throwing a Nerf ball, pretending we were airplanes and flirting with any nurse that would look our way.

The hard part began when we were finally called back to the surgery holding area around 1:45.  We had avoided watching TV or movies all day which is huge because that's what Landon does during therapy sessions.  I hadn't thought much about how well that turned out until the first show we watched has someone eating & Landon immediately began asking for "nak" and juice.  It was so sad.  Surgery was supposed to be at 2pm, but the OR wasn't clean & ready to go until 3pm.  They took him back about 5 min later and then 40 minutes later notified us that they were finally beginning the surgery.  I think they were trying to torture us. About 45 minutes later the surgeon come out to give us the scoop and soon after we were able to see our little man. 

He is such a tough, brave little man.  He is definitely hurting, but we have a PAC pump with some happy juice (morphine) that the nurse & I are pressing every 30 minutes to make sure he doesn't awake in excruciating pain.  I finally got a good look at his stomach and it looks good.  I was worried I would be a little squeamish seeing him like this, but I think I've been trying to picture him with it for a while, so evidently that helped.  Tomorrow will be a rough day as Landon will become more aware of what's going on, but still be in a lot of pain.  I'm very nervous about moving him to change his diaper or love on him because you can tell it hurts to be moved.  If you've had stomach surgery, I'm sure you can relate.  Someone from the surgical team should come in around 6 in the morning to check the incision and see if Landon's having any drainage.  So far, there's been very little drainage, so I'm hoping they will begin letting him have clear liquids in the morning.  The boy just wants his cup & his poor mouth is so dry.  Until the surgeon releases him, he is still on NPO, so no food or drink.  He's getting fluids & calories from the IV, but that doesn't help his desire to put something in his mouth.  The goal is to begin using the G-tube on Saturday and begin seeing how he's tolerating the feedings.

Thank you again for everyone's prayers and support!!  It means so much to our family!!

A little thing known as G-tube

Many of you know that our son, Landon, who turned 2 in March was diagnosed with Cystic Fibrosis through the newborn screening test.  The last 2 years have been such a learning experience for me.  I've seen myself grow in so many ways as I learn to fight for him.  A debate that's been going for at least the last 18 months has been whether or not to get Landon a G-tube(feeding tube).  While I admit I had my reservations when the topic was first brought up, my feelings have definitely changed.  I'll give you the back story at a later date so you'll know how we came to this point, but as of tomorrow the debate will be over.  Landon will be having surgery at 2pm tomorrow to have the G-tube put in.  We were admitted into Texas Children's Hospital on Monday to begin IV antibiotics to insure that Landon wasn't sick in any way so the surgery would not be delayed.  Since the decision was made to proceed with the G-tube, I've been very calm about it, but as tomorrow approaches, I continue to grow anxious.

I know this is the right decision for Landon to give him the best chance possible to beat this disease, but my anxiety is all selfish.  I worry about leaving Landon in the care of someone else while I work and having to trust them to do everything correctly if a tube feeding is necessary while they have him. ( I should let you know that I've become a bit of a control freak when it comes to Landon's care, just ask Justin)  I worry that he'll pull on the button & hurt himself or worse that I'll be doing something to clean it or feed him and end up hurting him.  I worry that I won't be able to handle it.  I worry that people will look at Landon as if he is a sick child or weak (if you've met him you know that nothing keeps this boy down) and pity him.  I worry that I won't treat him the same as I would any other kid.  And most of all, I worry that this is the beginning of the end for him.  For those who don't know, Cystic Fibrosis(CF) is a life threatening disease and the current average life span is 37 years.  All these worries and not once this week have I sat down and prayed about the situation or studied God's Word.  This is a daily struggle for me, but with all that's going on, this is the first thing I should have done.  Tonight, I sat down to read some verses that I should have all memorized considering how much of a worry wart I am, yet I don't.  Here are a few that helped calm my fears & nervousness.

Philippians 4:6-7 - "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Hebrews 13:6 - "...The Lord is my helper; I will not be afraid..."

Matthew 6:34 - "Therefore do not worry about tomorrow for tomorrow will worry about itself.  Each day has enough trouble of its own."

God,

Thank you so much for giving us Landon.  There are so many times I wonder why you chose us to be his parents.  I'm not the smartest person, I don't know all the medical jargon, I don't understand insurance companies or how the body works and why exactly Landon's doesn't work properly.  What I do know is that you wouldn't have chosen me if I wouldn't be able to handle it.  I know that you have something so special for this little boy.  I know that we are fortunate enough to be in the Houston area and be around such knowledgeable people that I don't have to understand everything.  I know that you love me and that it hurts you when I don't lean on you for support.  Forgive me for not seeking your peace sooner.  Help me to sleep tonight so I can be fresh tomorrow for whatever it holds.  Put people in my path tomorrow that I can minister to rather than focusing on my own concerns.  Last, but not least, be with Landon tomorrow.  I don't know how to explain to him what is happening to him tomorrow and I don't want him to be scared when he wakes up from surgery.  Show me how to put away my worries and be the mommy that Landon needs me to be.  Let this little song I learned long ago from Psalty be on my heart & mind all day tomorrow.

"I cast all my cares upon you.  I lay all of my burdens down at Your feet.  And anytime, I don't know what to do.  I will cast all my cares upon you."

I love you Jesus!!
Amen