My servant leader

(Reading books with Daddy on one of our days home from the hospital)

It's Sunday morning and again my husband Rick heads for church with his heart in multiple places.  In the past seven weeks he's had his heart torn between the church family he loves and his personal family that is struggling but in his own words, he's made the right choice to be where he cannot be replaced..HOME.  In the past few weeks he's looked more like Jesus..humbly serving where no one sees, than anyone I know.  He started this year wanting to focus more on prayer in his own life and God has seen fit to draw our family to our knees in utter dependence on Him for the life of our son Cameron,  Rick has preached while his son was being medflighted to St Louis with my blessing as we knew it's one thing to say you trust God..it's another to declare HE IS GOOD when you are faced with what we did that day.   He stayed with us for days in the hospital knowing that we both were needed to fight for Cam.  We both cried together the night we thought we'd lose him and we prayed.  He has preached after 3 hrs of sleep and long nights in the ER knowing he had my blessing to continue preaching while we left without him for the hospital again.  He trusted God's plans for Easter which is one of the big events on any church's calendar..even when there could be no plans for great dramas or great musicals this year when his heart was torn because our family was separated.  He has been a source of mercy and strength to each of us..continuing his role as Dad (which often includes talking to Corey's stuffed animals or helping talk the kids through different issues they were facing).  He has supported me in new roles as a nurse and kept me focused on just doing whatever I could to keep Cam going and encouraged me to let other things go.  His hugs and listening ear have helped all of us to process really difficult emotions as we've walked through this journey.

Every night for seven weeks Rick has slept near a monitor for Cam, often sleeping on the hard floor of Cam's room so that now his back is in pain often.  He has set his alarm to be there to watch Cam for dangerous air bubbles and back ups of blood in the tubing that would endanger Cam in the night.   He has lovingly gone to answer any calls in the night..every night for many weeks.  When I became ill with a fever there was no question in his mind that he would work from home that day to be there to support me.  I have never felt such love in all my life..such giving over and over again unseen.  He will probably never get his doctorate or write a book but I know God sees and He has great plans for my shepherd husband and for his church family as well through this.

When Rick took the job as senior pastor here God used his love to show me the love of the Father in a way that I had never known.  I learned through Rick that God loves us unconditionally and is for us..not a judge who sees our shortcomings all the times..but who sees us through a righteousness that is not our own..but that of Christ himself.  In marriage the picture is given of Jesus Christ and the church and I can honestly say that I'm married to a man who has looked more and more like Jesus than ever before in this trial because he has laid down his life for his family.  When he graduated from Seminary they gave each of the graduates a towel and told them the importance of being servant-leaders.  Some are called to do this in other places but Rick has been called to do this in his own home.  I pray that others can see and that God may use his example to lead other dads to consider their families' needs and be there for them in this way.

A child's illness can separate a family and a marriage but because Rick has quietly continued to lay down his life for all of us, God has kept us together and strong.  I am honored that he is my husband and my pastor.  I pray for my daughters to have young men who would sacrifice for their future families in this way and that my young men will grow up to be like their Daddy who strives to be like Jesus.  I love you Rick..I can't thank you enough for what you've taught me about God's love being never ending and never dependent on what I could do for Him.  Thank you with all my heart.

The ROCK that I can continually come to

Psalm 71:3 "Be to me a ROCK of refuge to which I may continually come; you have given the command to save me, for you are my ROCK and my fortress"

Just 48 hours after our 3 day hospital stay and PICC line replacement, on Wednesday night at 1am, the alarms sounded on Cam's pump and the line and tubing were filled with blood.  We called home health and our on call nurse at the pump company and after repeated attempts to flush the line but no success we determined the line was again clotting.  Around 2 am Rick made the decision after we spoke with infectious disease doctors in St Louis to go straight to the ER there hoping they could maybe save the PICC line as they had done once before.  At 3 am Cam left me screaming..that was a hard moment to be the one staying instead of going and realize how hard separation is for him.  We all only slept a few hours that evening.  Rick and Cam arrived in St Louis in the early morning hours and thankfully they were able to flush the line, reconnect him to his pump and even change the PICC dressing which had been causing extreme itching for Cam (due to an allergy to the adhesives that he is developing).  They arrived back at 1:30pm and we thanked God for his help as this was the first time things really turned out better than we had hoped!

That afternoon I became increasingly ill with fever and bronchitis symptoms but God provided a warm meal for my family and we had already arranged respite care for Corey.  Corey had also started attending our local Christian school three mornings each week this month til the end of the school year.  We applied for emergency respite funds through our state and were approved this week which was a blessing too as we now have Corey in good hands a few hours each day for this month so that we can continue to focus on getting Cam stronger.

On Thursday night Cam's pump backed up with blood again..only this time I was probably too sick to handle it so Rick woke up Caleb and they both took care of it. Thankfully were able to flush it before any clotting occurred.  Yesterday was still rough as we sought answers for our pump problems and I spent most of the day on the phone.  In the late afternoon they sent a courier directly to our home with a new valve that would hopefully prevent the problems Cam is having (which we believe are due to increased pressure in his heart that works again the interim times between dosing when Cam is still getting medicine but at a lower rate).  Last night..EVERYONE slept!

This week has been a hard one for me..I really feel like I hit a wall in every possible way.  I'm glad God promises to be a ROCK and not only that ..but that we can continually come to Him.  Each night in the night I pray that I will trust Him and know that He is near.  I do find myself asking now at times..how long O Lord..but I know He hears each plea and that He cares and is close to us.

In the past few days I've thanked God for warmer temps, for sunshine, for birds and budding trees that remind us winter will not always last.  I'm thankful for meals that keep coming in George Mueller style..just daily bread...for my kids having a moment to work together to build a square foot garden, for Cam being strong enough to ride his little bike with training wheels, for all of my kids and the ways they pull together and support each other, for Rick and his unending love and devotion to us as a family.  I'm thankful for sleep, for less fever, for cool breezes and ice water.  God is my ROCK..this is hard..crushingly so..but I can continually come and I will..to Him.

Easter Reflections

After 7 hrs in our local ER trying to save Cam's PICC line which had alarmed as high pressure and refused to flush, we transferred to St Louis on Saturday evening before Easter.  Cam and I spent our Easter in a hospital room far from our family.

I wrote this to a friend to describe my thoughts on Easter:

Easter is about Jesus..the power of the cross isn't just for salvation although that would be enough if it were..but it's God's sustaining POWER and the HOPE that you can have knowing He has conquered and there is nothing here that can separate us from his LOVE.  My favorite song through this is I Will Rise by Chris Tomlin (although ultimately not a happy song on earth..because it mentions that death is not the end..and not something I want to contemplate right now..but it truly does cross my mind every day that I might lose Cam).  It's the words: there's a peace I've come to know, though my heart and flesh may fail, there's an anchor for my soul..I can say IT IS WELL...Jesus has overcome..and the grave is overwhelmed..the victory is won..he is RISEN from the DEAD.  I've identified with the power of the cross this year more than ever..I've identified with a Father who watched his child suffer for me..who is not far off nor uncaring but who truly understands my tears and my fears..I've identified with a Savior who kept walking..when he knew what he was facing and I"m in awe and ask Him for that same sustaining power to keep walking a road I wish I was not on.  So maybe that's better than a family picture or a ham dinner or singing He Arose together in church as a family which is our norm.

God answered my prayers for peace even in that hospital room while Cam and I waited for Monday morning to come when he would have surgery again to put in another PICC line.  There were Easter egg hunts and prizes to encourage the kids at the hospital.  Cam opened up a gift from us.. a book I made with Shutterfly to tell him how much God loves him and how HE will help him in the hospital.  There were pictures posted on Facebook by my sweet daughter showing me how they all looked in their matching outfits even though part of our family was not there.  God was with us..giving strength and reminding us as one of my nurses and I talked..about our "core"..the true meaning of Easter.  He sent a few compassionate nurses who helped us get some rest the second night. He sent a friend in St Louis on Easter who willingly brought me some Starbucks to keep me going and her presence made me smile :)  We skyped together on Easter and it was nice to have that connection.  He sent Caelyn and Rick to arrive just as Cam had gone back for sedation on Monday morning and this time Cam's surgery was in a place where they could give him "happy meds" before it which made for a delightful Cam instead of me watching him scream and go limp as previous procedures had been. God gave us peace as we met with the heart surgeon who sat on the end of Cam's bed and explained the procedure for the open heart surgery and we knew we were in the right place.  God is good...Easter is about suffering and YET hope.  Because He lives, I can face tomorrow.

Lincoln, Love and Letting Go

How's that for alliteration? :)  We had a rough rough week adjusting to all kinds of problems with the pump and having home health come daily.  We were able to get some help but it was honestly exhausting and overwhelming thinking of how Cam might end up in the hospital for his daily infusions if we could not find a solution to the air bubbles and things that were happening with the pump.

Then God sent some dear homeschooling friends to help me out.  They met just for encouragement but ended up cleaning our bathrooms and offering to make meals to extend the meals that our church had provided.  I'm so glad God let me humble myself and say yes because our weekend turned out a little crazier than anticipated.

On Saturday night Cameron suddenly spiked a fever.  We called home health who put a call into the emergency line of infectious disease in St Louis.  Cam ended up with back pain as well so we went to our local emergency room.  After five hours and bloodwork and consultations with St Louis, it was decided that Cam needed to transfer there.  It was 2 am on a Saturday night and we knew Rick had to again preach in the morning but were praying about what to do.  He texted our church secretary and friend and as God ordained it, she could not sleep and was up reading a book and agreed to meet me at 7am.  We attempted to pack and get some sleep but soon after we arrived at home, Cameron's pump kept alarming.  We could not get it to stop and then realized that the PICC line would not flush with saline.  I was so overwhelmed and kept praying that God would help me trust Him.  I feared what was going on with Cam and also the loss of the PICC line.  After one hour of sleep I got up to finish packing and Cameron and I left at 7am for our three hour journey.

We arrived in St Louis and Cam started having severe stomach pain.  It was a very scary time for us but eventually he had times when he felt better. By a miracle of God, they were able to save the PICC line and begin to use it again to draw blood and to administer antibiotics.  We thanked God as it should not have been possible after 8 hours of non-use.  Rick arrived at 5pm and God gave us peace and just the knowledge that Cam was in good hands and safe, made us feel better.  We spent the next two days doing testing to make sure his leg was still not a source of infection.  Cameron was on isolation so that made life interesting as we tried to entertain him in his hospital bed for many hours each day! Eventually the doctors determined it was just a virus but being in the hospital allowed us to work on some of our pump issues and also to help the doctors from various specialties for Cam to nail down some dates.  We left with the knowledge that IV antibiotics were going to continue until April 13th and open heart surgery would now be the 16th.  Just having things coordinated made life better and having moose pancakes and a 48 hr break from babysitting the pump helped (although the lack of sleep in the hospital was HARD this time!)

We were thankful to arrive home on Tuesday evening and a dear friend brought Cam a present.. A new betta he named Lincoln:

I recently told a friend that I'm a mess (and she says "no you are just real now")...I no longer attempt to pull off "together"...I've had to let go of alot of the way I want things to be..I've had to humble myself as say through tears that I needed help and couldn't do basic things like make dinner or scrub a tub...I've had to pray more for wisdom and accept that there were things I thought were "up to me" but really they never were..they were God's domain.  I don't have the lessons learned quite yet but it's freeing in many ways to let go and trust God and stop pretending that as mom I had to be the answer, the perfect example and the protector of my children.  Those things were always God's jobs.  I am so thankful for the ways He is holding us up and sending help..going before us and providing whether it's meals I didn't know I'd need..or keeping a friend up at night so she'd get our cry for help at 2am.  I'm thankful for Lincoln the fish because he makes Cam smile :)  I'm thankful that because God loves me and His plan is greater, I can trust Him and let go of many things.  I need prayer..it's hard to change and stop trying to control and rest.

Blessings in the Valley

As Easter approaches each year, I try to think through what the Easter story means to me with what I am facing that year.  This year two things have really been a blessing to me...to think our Heavenly Father KNOWS firsthand what it is like to watch his only Son suffer...brings me hope and encouragement.  Second, I know we've been chosen to walk a hard path and that suffering is a chance to walk in the steps of Jesus and so I'm grateful.  We often want to KNOW him and the POWER of his resurrection but don't want to WALK in his sufferings.  Although this is not a place I willingly go (I've been known in the past to refuse to sing the old Steve Green song "Refiner's Fire" because I couldn't ever say honestly it was my sole desire...) it is a good place...a place that fits in well with Easter.  I have a Savior who understands the road of suffering...and a Heavenly Father who knows just how hard it is to watch your child struggle...I am grateful this Easter.

Life in the valley is quiet..it's simple...sometimes it's sweeter.  You no longer feel inspired by the latest blog article to get up early and be productive, because you are busy realizing life is a gift..so you walk hand in hand collecting stickerballs on a Sunday morning before church.  No one expects you to be doing everything..so you spend time resting, praying, just being because you know the valley is about to possibly go deeper.  You aren't afraid..because you know the GOD who goes before you..but's like a separate reality that is very different than the life you used to live.  You have to pray for a shift in priorities...you have to realize that emotions aren't reliable here...you have to look around you and choose thankfulness because God is sending His love each day through so many people.  And all the time I can relate to my Savior in a new way...and wonder what LOVE would compel Him to keep walking knowing what He knew on the road to Calvary.  Thanks Father for giving us a high priest who would understand our weaknesses and be our example.  Thanks for being with us in the valley..it's quiet..it's different here..but without all the extras I can hear you more clearly.

Home Sweet Home

Cameron came home on Thursday!  We were so excited to have his PICC line and all the things in order for him to return to home.  These pictures are adorable because it's his first time in "real clothes" in almost 2 weeks and he was glad to be free from IVs for a few hours as we made the journey home.

We found out from the cardiologists before discharge that they were going to bump up Cameron's open heart surgery so that was a bit hard to hear.   Now days later we have learned how to run and disconnect IV pumps from home that give him continuous antibiotics to help heal the infection in his body (and now his heart) and have a tentative heart surgery schedule for April 10th.   Cameron has started physical therapy and we have a home health nurse that comes twice a week for dressing changes for his IV as well as blood draws.  We have several follow up appointments in St. Louis over the next few weeks and are putting together a more solid childcare plan for the upcoming surgery.  It has been nice to be home in our own beds, to snuggle and spend time providing some stability for everyone.  Our church family has supported us in so many ways and this week they are providing meals..I'm so grateful because learning to be a nurse at home has had its challenges and this is one very practical way to relieve some of the pressure for our family.   God is good and He sustains us.  He has called us to walk this path but always walks with us.

Lessons from the 10th Floor: Never Alone

 

Cam and his Bruce the Moose cookie

On Sunday night we made the difficult decision to have Rick return home to our other children..we felt that Corey needed one of us and that Caelyn was becoming ill and in need of a doctor's visit.  It was a hard moment for me to let Rick return and to trust God fully being three hours from home, with no vehicle and not really sure what would happen from day to day nor how long this week might be.

God never leaves us alone even when we have no one..He is there.  I can't begin to recount all the ways in the past two days that He has provided.  After many days of difficult blood draws, due to a new antibiotic that requires frequent monitoring of blood levels, the IV team put in a special IV for blood draws that makes it painless for Cameron (so thankful as tonight we need a 4am blood draw and they can do it while he sleeps!).  God sent someone with an ipad to help Cam play Angry Birds (and even Mom got a bit addicted in that 5 minute time frame) while they worked on him and I had no other hands to support but God was there.  He gave us an amazing night time nurse who would be with us for three straight nights..providing support and continuity and whose main goal seemed to be to watch over the IVs closely so all of the night time medications would not wake us.  We have had the best sleep these nights since Daddy went home.  Cameron became stronger almost overnight and decided he could walk to the playroom instead of using a wheelchair (which might have been impossible for me to navigate with an IV pole by myself).  God sent my St Louis new friend to come with toothpaste at just the time when I was in the downstairs playroom and needing an extra hand to carry some things back to the room.  Then when we returned to the playroom that evening, a volunteer I had met earlier in the day was right there and helped us get there safely.  At the end of our time playing, Cameron wanted to take the Chutes and Ladders game upstairs and again another person helped me.

Tonight we were ready to embark on another playroom outing and a woman showed up at my door saying..you know me but we've never met.  It turns out she was an adoptive mama from our adoption board who knew about Cameron and unfortunately her son was also here and she walked down with us to the playroom.  It's as if each time I took the step of faith outside this room, God was always there sending help.
Today a member of our church was on her way to St Louis and Rick asked her to stop and drop off a present of chai for me.  She called as we were playing and I wasn't sure how to meet her.  Well then a staff member mentioned Wii to Cameron and said she'd take care of him for a few minutes while I went outside.  So thankful for the little things God is doing to send me help and encouragement..I am not alone.

Of course the BIGGEST thing we've seen God do this morning is negative cultures!  We were all praising Him out loud and praying through this day that they would remain.  God sent us a nurse today that will also coordinate all the steps needed tomorrow for the procedures for Cam's heart and the installation of the PICC line.  It's now 37 hours and we are so close to being cleared that we can see the finish line..the hope is that Cam will leave the hospital on Friday!

We had a fun day playing, laughing, reading, watching a movie...I love this kid!  Tomorrow Dad is coming for a visit (and I'm sure Cam will talk to him again about how he wants a real glow fish like the one in the fish tank here).  Praying now.. the hospital staff is putting everything into place as if we are really doing these procedures tomorrow.  I am not alone..thank you God for walking with me and sending people at the right time...for knowing what I needed and meeting that need even before I could ask.

Cam's drawing of a fish tank with a fish inside and his list from the Moose Menu here for breakfast today

Lessons from the 10th Floor: Thankfulness

This morning I wanted to write down some of the good things that have happened in the hospital in our time here and some of the good memories I'll have from here.

Rick and I have not lost our sense of humor.  Sometimes we are so tired we start laughing because basic things (like remembering which floor to exit onto from the elevator) are hard.

Cameron yelling "Mom it's an emergency...I lost my lego guy in the bed"...umm Cam that's not an emergency after all that we've been through recently.  One time he started complaining about pain in his hip..only to find out there was just an army man under the sheets :)

After many attempts getting in and out of elevators with a child in a wheelchair with an IV pole, the elevator begins to make a horrible beeping sound.  Now Cameron is a bit concerned about it and says "focus Mommy focus" when I'm trying to help.

Each night we have to put his Lego men to bed..in a biohazard bag because it's the only ziplock bag the hospital has to offer us..it makes me laugh each time.

We have come to the conclusion that for future pre-marital counseling for couples, we will encourage team building activities like taking a kid in a wheelchair with only one leg sticking out front, connected to an IV pole, with a balloon from the gift shop to many floors in the hospital...because you can't beat that kind of teamwork for building a strong marriage.

One night I put my hands under the faucet in our room waiting for it to turn on automatically..only it wasn't that kind of faucet ..and it took me a long time to remember.   

It's wartime mentality here..with only 3 outfits a piece we do laundry at the Ronald McDonald Family Center on the 5th floor every day to keep up.  And for fun we like to count our assets each day..today it's a garden salad, 2 diet cokes, 2 milks and some apricot jam.

Little kids are resilient and adapt well to hard things...even from the beginning when he was very sick, if you put a straw up to Cam's mouth while sleeping he'd open his mouth like a little birdie and would do the same for medicine.  Now when they check vitals every 4 hours he just holds out his arm and knows what is next.

Having said that I've learned to listen to Cam..if he's really fussing about something..then something is wrong (like the day when both IVs failed and he wasn't just being emotional..they hurt).  He has things that really bother him..and it's always surprising.  When it came time to learn to walk again they offered him non-slip socks from the hospital and he came unglued (thankfully a nearby friend took me to Target and we found some that looked like normal socks).  When he has blood drawn it's very challenging (and thankfully now they realize that and call the IV team to do it with the help of ultrasound to find the veins) but he insists that he needs his ears covered (so we made sure the kids brought headphones to help when they visited).  When Cam needs a procedure done under sedation and we are waiting, he wants the lights out to calm him so he can rest.  When Cameron gets overwhelmed he shuts down like a little turtle pulling his head into his shell and pretends to be sleepy.  One day he cried for 2 hours about the smell of the new tape on the IV and the day before he was upset because he was finally awake enough to realize he didn't have pants (due to 2 drains in his leg..thankfully now he has pants but complains because we have a hard time keeping them up..he lost 5 lbs in one week).  

Cam likes watching Night at the Museum (1 and 2) over and over again...for many days the nurses on day shift felt that we were living this movie out too...during the day Cam's temps and vitals would be fine but then at nighttime it was like he came to life..and not always in a good way..so the day nurses would warn the evening nurses about him.  Cam smiles each time during the movie when Darth Vader is there..and also the part about Dum-Dum..give me some gum-gum.  

I love his smile..the way he snuggles with me in bed and says "I love you mom" and holds my hand.  I love his sweetness and the way he is polite with others even when he hasn't felt well and will say "no thank you" (or the funny time in the ER when he told the nurses they couldn't poke him because "I'm busy right now").  I love when he looks at his six balloons and said "People so sweet of me" (meaning they are sweet to him).  I love watching him teach me how to play Don't Spill the Beans, seeing him bowl with a beanbag in the playroom, watching him enjoy a little bag of Sunchips, seeing the war between the army men and the star wars legos with battle lines drawn up with leftover stirring sticks Daddy brought him from Starbucks. 

 I love when we got here and every time he would wake up from surgery he would whisper "ice cream".  I love how he pulls me close to whsiper when he wants me to ask a doctor or a nurse something (last time it was "can you ask if there is a slide here.."..umm buddy you can't do a slide just yet).  I love talking with him in the hallway as we push little buttons of the animal murals on the wall and listen to the music that comes out..we talk about how someday we'll play in the park with Cayden again. 

 I giggle thinking about the first days coming out of surgery when they offered him popsicles and he said he couldn't have them because they have colors in them (we had taken him off artificial food colors at Christmastime and he knew it).  I assured him we'd do whatever it takes to get him well..even yesterday he asked about Gatorade and made sure colors were ok in the hospital.   He is a little rule follower to the nth degree..love this kid.  I love the way he smells in the morning and way he hugs me close.  I love the sparkle in his eyes that was gone for a while.  

I love his creativity in making a "science esperiment" with a helium balloon tied to the blown up glove the PT guy gave him and watching him chuck it over the bed to see it fall to the ground.  I think it's funny he thinks his umm "jug" looks like a "science esperiment."   I love how he tells me he wants to go to Target or Golden Corral (especially during the first 3 days when he was hungry that's all he talked about ..even when delirious from pre-surgery meds).  I love how about 5 days after we got here, he perked up and smiled and said "Mommy Daddy me time"...he's always kind of thought he was an only child at times and I think he realized his wish came true (although he does tear up about the other kids missing him).

Cam's blood infection remains positive this morning...day 10.  I'm grateful for the time to pray and write out the good things I'll remember about our time here as it focused my heart on thankfulness while I was waiting.

Lessons from the 10th Floor: The Lord sustains

It's Sunday on the 10th floor..last night I wrote a post asking friends to post verses that God was using to encourage them so that I might also be encouraged while we waited for news of the past blood draw..and the cultures remain positive in his blood for infection.

Several of the verses pointed to God's sustaining power in our lives and I have loved that word "SUSTAIN"...the ability to keep on going...if only for one more moment, til the next meal, til the next sleepless night.  I have trouble sleeping in my own home..it's amazing to think how God has lifted us up and helped us even when there is no way to explain that I can keep going with so little sleep.  Chelsea also says at home they are experiencing this as we've not known how long the trial will continue to last and we cannot plan for it.  I'm a planner..this is hard..but clearly God is able to provide even when there was no plan when we turn to Him and trust Him.

We are all experiencing God's sustaining power..it's not easy day after day to trust when the blood tests continue to be positive..when your hopes of leaving this week are slowly evaporating.

Although everything inside of me wants to pray for a specific date for our departure from this hospital, I'm now praying for God to just sustain us

Psalm 3:5 "I lay down and slept; I woke again, for the Lord sustained me"

Cam is having a good day today..he was able to walk around the entire circle that is our 10th floor, tolerated playing in the playroom for 1 hour (mostly sitting), ate some breakfast, played with his little lego set, taught Mommy how to play Spill the Beans and is now resting up some.  He also had a little bath in his bed..here's a picture of him in his special shampoo cap:

Here's Brownie the dog..his first present in the hospital..given by another adoptive family...and Cameron's Ticket To Ride which is what he uses as a passport to allow us to take him to other floors of the hospital.

Lessons from the 10th Floor: Waiting

Friday has now turned into Saturday and the past days have been filled with fun moments of watching Cameron at times come back to life.  He has been fever free and able to begin learning to walk some.  This is priceless after what we have been through.  Each morning we fight through fear and discouragement to learn that all the efforts taken still lead to positive cultures in the morning for staph in his blood.

They think it is endocarditis (infection of the heart) but don't want to do a sedated heart test until they are able to put in his PICC line ..which he cannot do until his blood cultures are negative for 48 hours..so we wait and pray.  There has been a frantic rhythm to our days up until now and then it's the weekend and we are slowing..resting..praying...hoping for an end to this time in the hospital but fighting for joy that God is on the throne and HE will answer in His time.

In the meantime Corey has gone to live with another family in our church for a while until we can come home as it became too difficult to manage his care at home with our other kids.  He is happy and safe and even went to a local Christian school for a few hours yesterday and did well.  I know God maybe using all of these things even to prepare us for the heart surgery in the future...we trust Him..we love Him.

Here are some pictures from Cam's awake moments during the past 24 hours..thank you Lord for allowing us to see that sweet smile again!

Dealing with the painful blood draws each morning..we covered Cam's head w/ his moose towel and used headphones because he keeps on insisting that he needs to have his ears covered :)

Cam practicing standing and looking over the Moose menu at the hospital (only God could love Cam and so sweetly orchestrate the Moose theme here at the hospital..Cam loves moose!)

Cameron playing at physical therapy in his bed.  He loved the balloon the therapist made from a glove!

After a visit to the playroom, Cam finds a few toys to bring back to the room!

Lessons from the 10th Floor: The importance of family

On Wednesday Cameron spent most of his day waiting for and having a sedated MRI on his brain and leg to check for infection.  We were starting to be very exhausted and God sent us a couple that Rick had stayed with when he did Biblical counseling training in St Louis last year.  They met with us and prayed with us while we waited for Cameron to get out of recovery.  We were relieved at the end of the day to find that there was no infection in either..being here is full of ups and downs ..sometimes moments apart!  Cameron made it through the night with a slight fever that was able to be under control and we thanked God for that!

On Thursday we were so excited because our kids were coming to visit for a few days and we had not seen them since Sunday morning!  We are so proud of our gang at home..doing laundry and cleaning, caring for their younger siblings, managing school etc.  They have pulled together and sacrificed.  They have worked well under trial.  We could not wait to see each other and despite his food/drink restrictions that day, Cam was able to help us get a few little things for the kids to put in gift bags for their arrival and then smile and play with them for an hour.

Family...it's so important...that's why Rick sits with me in a hospital room so we can do this together..dropping everything else for the sake of the one who needs us most while still praying for God's care over our gang at home.  We loved being able to see each other during this visit and can't wait til we can be home again together.

Lessons from the 10th Floor: God always provides help and comfort

As it became apparent that we were facing not only a septic infection in Cameron's leg joints but also in his blood stream, we realized that the emergency plan we put into place for the kids really wasn't holding up well by Tuesday.  We kept praying for them at home realizing that we were going to have to stay in the hospital for many days.

Then God began to send a flood of help and encouragement.  Friends told other friends to pray, Cameron's situation became known in the adoption community, people we didn't even know began to reach out to us.  My new friend in St Louis continued to bring us meals and provide a nearby help for us.  The staff at Children's continued to help make everything as great as possible for our stay while Cam continued to struggle.  He spent his day on Tuesday in a waiting mode.  That day Cameron received several balloons and stuffed animals from friends..in the days to come friends from afar would send him a Moose book that they made and cards came from Awana kids.  Church friends reached out to our kids at home offering them help and meals...even those outside our church began to help with meals and care.  Every email..every verse..every facebook message made us know that we were not alone..not only was God with us but he was raising up an army to help hold us up in prayer when we felt like things were so hard.

Tuesday night Cameron's fever spiked again and his heart rate went dangerously high to 190.  We prayed again and had so little sleep but God was with us as we trusted our little son to Him..........

Sometimes when you are going through a hard time, you look around see that God is raising up help for you..sometimes in unexpected places.   I told Chelsea a few things in crisis...ask for help, accept help, simplify everything that isn't important in light of this emergency..look for God showing up in unexpected ways through unexpected people and praise Him for it.

We have been humbled by the response of our church family, facebook friends from long ago and those in the adoption community who have never even personally met us..plus strangers who have helped us as well.  We have received love, prayer, physical help to meet needs.  A local Christian school took Corey for respite for a morning and as I write this later in the week now, a friend has taken Corey in full time.  People have filled up our gas tank at home, given rides to our kids to church when there was snow, checked in on kids, taken them out to eat, brought them snacks for their journey here.  A friend drove our kids to St Louis just so they could be with us.  This is perhaps the hardest thing we've faced yet in our lives and yet the LOVE of God's people could never be known in such a strong way had this not happened.

Lessons from the 10th Floor: Prayer and the Sovereignty of God

On Monday post surgery it felt like a crazy day long parade as we met with infectious disease specialists, orthopaedic teams, etc.  It was really overwhelming as we've not had a child in the hospital post surgery before.  We were comforted by so many working so hard to find a solution to the problems Cameron was having.  Most of that day is a blur for me as we did constant testing.

A cousin of a missionary friend in South Africa found out about our situation and sent me a text asking if she could help..and I decided to meet a perfect stranger and ask her to take me to Target to get some things we needed.  She was a sweet lady and I felt within moments that she was a friend.  Having Starbucks at Target and feeling like I had a few things to last a couple of days made things better.  She left us with a cooler of sandwiches and a note for Cameron and later that evening provided a meal that she dropped off for us.  God is good.

One moment I remember clearly that day is when a man knocked on the door at 3pm.  He said "do you remember me?"  Then he identified himself as Cameron's cardiologist and said we needed to talk.  We stepped out and he told us...the echocardiogram today showed a change in Cam's heart...not only does he have the VSD we knew he had, but now he had muscle bundles and he needs open heart surgery.  We were floored..and felt like we had to keep this news to ourselves until we had a time to process it and accept it and then tell our children in person so they wouldn't fear.  Now we were facing more fears...and this wasn't going to be the end but rather just the beginning of a many month trial ahead.  I closed the door and cried...I said "Rick this is why we lost our adoption..I was confident one day I would understand why that didn't work out for us..and I had no idea it would be Cameron"  There is no way we could have faced heart surgery at the time the babies would have been due.  It is one of the many times in the past 3 years when God has clearly shown why He in love did not allow one thing to work out because He was preparing us for something else.  He is good all of the time.

On Monday evening around 2am (technically Tuesday morning) Cameron's fever spiked and his heart rate climbed to 188 while his oxygen plummeted as well.  He became very paranoid and said that waters were drowning him and he was seeing things...Rick and I were terrified as tons of people rushed into our room and ICU was called.  We honestly thought he was going to die.  They were able to give him several meds and observed him for a while.  It was a scary and helpless feeling..I prayed aloud over him and decided to send a message out on Facebook saying if anyone was awake to pray for him in danger.  It was then that God reminded me of the power of prayer and the comfort he gives in the night..adoptive mamas overseas picking up their children in Bulgaria and the Ukraine answered, missionaries around the world answered and prayed, mamas of newborns who were up prayed..and God answered and kept Cameron safe.  He is Sovereign and when we cry out to Him, he hears our prayers.

Psalm 46:1-2  God is our refuge and strength, a very present help in trouble: Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea...

Lessons from the 10th Floor: God provides PEACE

On Sunday morning I sat with Cameron while talking with our doctor about our desire to see him go to another hospital and our willingness to take him ourselves after church.  We played music to encourage Cam as he was dehydrated and unable to get an IV into him.  Our doctor called St Louis Children's with Cameron's symptoms and they agreed it was indeed serious and said they would arrange a transport for an ambulance..meaning we could not travel with him.

When we moved to this town, my greatest fear is that one day not only would our kids need medical help but  that it would be serious enough to mean they'd go on an ambulance without us...and it was coming true.  A few moments later the doctor said..they decided it's necessary he gets there quickly..they are sending a plane within the half hour.  It was now 10:30am and our church service was starting..I called Rick and told him to please preach and that God would be with us and asked him to grab a friend and send her to the hospital to be with me.  Within minutes I met the evacuation team..they were able to start an IV..and I told Cam I loved him and that he was going on a plane ride and Mommy and Daddy were coming soon.  Rick was able to finish the service and get to the doors as Cam was leaving the hospital to say goodbye.  The words of the Chris Tomlin song "I will Rise" went through my mind..here I was facing the worse fear..and had peace.  For 7 days I had done all that a mom could do and now I had to release control of my child and let God control and let him go to the hands of those who could help him most.  We got changed and packed bags quickly and said goodbye to our 5 kids with no real plan in place for them and started the 3 hr journey to Cameron.  While we were in route the moms who were medical personnel on the plane sent us a picture of him looking sad but ok..when he arrived they had him talk to us (he was really crying) and then they had us talk to an intake physician and the nurse. Throughout our journey they updated us about ultrasounds, blood tests and by the time we arrived at 3:30pm they had a plan in place.

We signed papers for anesthesia and they did a procedure to remove fluid from his ankle, knee and hip to determine if there was an infection as they suspected septic arthritis.  Blood work showed that his blood was also infected and over the next few days they found that it was staph.  By 7:30pm Sunday night Cameron was in full emergency surgery after cultures from the first procedure showed infection, while we sat in waiting room alone.  Things were happening so fast and God was with us.  I often wonder how people walk through tough things...but I know that God was with us and giving us peace at times that passed all understanding.

Philippians 4:6-7  Do not be anxious about anything but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.

Lessons from the 10th Floor: The Lord is near and provides direction

I decided in these days of waiting that I should write down some of what God is teaching me as we have moved from what seemed like a strange virus to being on the 10th floor of St Louis Children's Hospital with our son Cameron fighting a septic infection.  The Lord is near...that's one thing I'm sure of.

Although my days and nights run together now in one big blur, it started last Monday when Cameron's heart rate seemed to soar at home and he had a strong headache and confusion.  We took him to our local ER and they did a little test for the normal strep and flu and said it was a virus.  As the next days progressed he continued to have fevers and violent shaking and his heart concerned me (he has a VSD..a small hole in his heart).  We went to our local family doctor and he said it was a virus.  About Wednesday Cameron complained that his foot hurt and his fevers and violent shaking continued..he spent much time in the bathtub just looking at his Star Wars bath toys we bought last year in Disney.  Slowly he became more and more lethargic and the fevers continued and I kept feeling his chest and thinking that it seemed that his heart was struggling more.  On Friday I just cried..my mommy heart knew something was very wrong and I kept fearing we'd make a mistake and something would go wrong.  The doctor said we could try an antibiotic.  On Saturday his fever was down but by then he had to be carried everywhere...Saturday night we went to our local ER again and explained our situation.  They ran blood cultures which would take days then checked his chest but did nothing for his leg.  They came to the conclusion that his chest xray showed pneumonia but I thought that was inconsistent with the other things going on since he hadn't coughed at all.
We were feeling a bit of despair as they told us to keep him at the hospital overnight and they would try to do IV fluids since he was dehydrated as well.  They kept on sticking him over and over and were unsuccessful.

Then God sent someone to help....a staff member at the hospital...she quietly came in and asked about his symptoms..I explained the high fever, the overall joint pain and that he could not use his leg.  She told us that these were dangerous symptoms and we should get to a children's hospital asap.  We thanked her quietly and then agreed to stay overnight since Rick would preach in the morning.  I had prayed for God to confirm what we should do and give me courage to challenge things a bit.  Many people encouraged us to seek help for him and we are thankful for each one and the confirmation it was to us that we were doing the right thing.

That night I went home to bed while Rick stayed at the hospital..thinking through the fact that we'd have to get him to Children's Hospital after Rick finished preaching...and I made myself recite every verse I knew as I tried to pray and go to sleep without answers.  This made me thankful for Scripture and it's ability to comfort and remind us of truth and reminded me that I need to memorize some more passages asap!

Lamentations 3:57  You came near when I called on you, you said "Do not fear"

Mickey and Me..Day 7 and travel

Mickey and Me...Day 6

Day 6 we decided to do Epcot.  The weather changed drastically overnight and it was chilly!  I remembered last year that we should head to the Character Spot there to see early if there was no wait..and sure enough it worked!  We had no wait to see Mickey, Minnie and Pluto and the kids were happy!

Throughout our time, I kept seeing large groups and they had flags to wave so those in the group could find them.  Cam must have heard me mention this because he made a little one out of Mickey stickers and a wooden stick from Starbucks..we all smiled when I started waving it so we could find each other in the busyness of The Land area in Epcot :)  (I love each morning when we stop for Starbucks and Cam yells "Mommy TIME" as he leaps out of the van with me!)

We rode Soarin again and had a snack break.  Chelsea decided to round up some pennies and take the little ones over to make souvenir pennies..they loved it!

Riding Living with the Land again...the little ones don't tire going on this one and learning about various plants.

This is a ride inside of Innovations that Chelsea and Christian went on..you can predetermine which moves you want it to make ahead of time and the robotic arm moves you to simulate a rollercoaster.  

The older kids convinced Rick to go on Test Track with them so I took the little ones on a small ride about the five senses...the weather was simply beautiful today..clear blue skies!

It was fun to take a picture of the kids just as the monorail went by overhead!

Trying to get some wiggles out!

Christian had seen something about different cokes from around the world and so we stopped there and it was fun..you could sample (for free) many different cokes with a variety of tastes!

Caleb made me smile when he told me he needed one more pin so he could be balanced!

We figured it was time to head back for a nap and break when Corey started laughing hysterically at his own shadow :)

We got a quick dinner at Chickfila before returning to the park.  We came back and toured some of the countries that we had missed on our first time through Epcot.  We enjoyed the 360 show in Canada (Cameron helped feed Corey his remaining dinner and kept reminding him not to be silly so he wouldn't choke..it was precious!) and decided to see the American Adventure again...the older kids went to one more ride and then joined us.  We had a funnel cake with the little ones and then watched the closing fireworks..it was freezing by then but still fun!