Cam shows MD who's boss!

After a challenging start trying to get back to school and work, and a short night on sleep, Thursday morning came around rather quickly .  Cam did his boost then got ready to head to school to give it another shot.  Kevin took him in and off to the bathroom they went.  The plan was to have the school nurse go in and help him until he regained the strength to do it alone, but Cam, once again, showed his strength and determination and said he didn't need any help.  Cam pulled his chair in the way that his Dad had practiced with him and up and over to the toilet he went and back to his chair!  Cam went to school both Wednesday and Thursday full days and did everything on his own.  I can't put into words the feeling I had when I walked in Wednesday afternoon to see him smiling after a full day of school and telling me he did it on his own.  I think we all slept a little better that night :)

The weeks ahead bring appointments with the cardiologist, pulmonologist, follow up with the surgeon and a new MDA clinic at Lurie Childrens where we will see a neurologist, orthopedic and slew of therapists. We will keep you updated with how they go, for now we hope and pray that they are just routine visits.  Most of the doctors are new to us as we change his medical care over to the team at the new hospital.  The appointments will be long and grueling, telling the story of Cam's medical history for the last 9 years over and over again, but it is worth the agonizing to have Cam under the care of some of the best doctors in the world!  We are hoping with a new team in place we can push forward with some further genetic testing to come closer an exact diagnosis in order to aid in Cameron's treatment.  With all of the advances that go on in the medical field on a daily basis we feel as though we owe it to Cam to provide him with the best medical care we can find. 

I feel as though we have hiked our way out of another valley, cleared the treeline and are climbing for the next peak, Cameron's 10th birthday!!!  I can't believe almost 10 years have gone by, seems like just yesterday I was watching him take his first steps.  I know we have a long, bumpy road ahead of us with many obstacles, but in this moment I find peace that we made it through. We will enjoy the peace and serenity while it lasts and know that on the other side of every valley is this moment where we can all smile, take a deep breath and make every moment of our lives count.  

Back to reality

Every day I wake up and look at this face, a face of bravery, happiness, determination, intelligence, creativity and love.  Most days I look up to him and wonder how he does it.  How does he wake up smiling everyday knowing the challenges he will face?  How does he wake up everyday determined to prove people wrong?  How does he wake up everyday ready to work 10 times harder than the rest of us to do everyday things?  How does he come up with the most creative ways to make things that are difficult for him easier?  How is he so BRAVE?  

This morning I woke up extra early so I could hook Cam up to boost before school.  I carry him to our bed, hook him up and he promptly falls back to sleep.  I continue getting ready all the while worrying about how the day will go.  I pack our lunches, make coffee and go back up to disconnect him and get dressed for school.  He comes downstairs with a smile on his face ready for his first day back.  I am smiling too, but totally freaking out inside!  I say goodbye and begin my commute to work.  The plan is for Kev to go in and make sure he can use the restroom, which is the most challenging part of his day because he has to transfer from his chair all by himself.  As I drive I am trying to talk myself down from the cliff and just keep reminding myself how excited Cam was to be going back to school and that is a blessing.  At 8:58 I get the call.............things did not go as planned.  Immediately my heart hurts for Cam, he must be so upset.  My mind is racing! What do we do now?????  What if he can't ever do it again?  How will we make this work?  Will he have to change schools?  How will he handle this?  Then I get it together, I pull up this picture on my phone and think of all the things I listed in the beginning of this post.  Knowing that Cam will push through with all of our support and love I sucked it up, went to work and got caught up.  Meanwhile Kev and Cam headed home and began to relax themselves.  They started working on some ideas for making transitioning easier and came up with a great way to make things work.  We've practiced a few times tonight and Cam is ready to go back tomorrow and try again and I have no doubt that he will do it!

I spend a lot of time in the car on my commute to and from Indiana for work and use this time to gather my thoughts, cope with situations and reflect on the days past and put my energies in the days to come.  I have learned so much from Cam in the last 9, almost 10, years that I cannot begin to put it all in here, or into words for that matter.  I hope for those of you who don't have the pleasure of knowing Cam as well as others that I can continue to share pieces of him so you too can get to know his strength and use it to push yourself through anything you encounter.  He has faced more challenges in 9 years than most people do in a lifetime, yet he still wakes up with a smile on his face ready for whatever the day brings! 

Smile :) 

Challenges often make us realize that we have more courage than we think and that one person CAN make a difference in the world ... even if it's the world of one other person.
— Chelle Thompson, Editor of Inspiration Line

1 week post-op

So here we are, 1 week post-op already!!!  I can't believe that a week has gone by and Cam is headed back to school tomorrow and I am headed back to work.  All in all things have gone pretty easy since we came home, aside from the occasional moment when I want to throw that feeding pump across the room :)  Cam has been feeling better and better everyday and is working hard on stretching and moving around in hopes to be back to normal sooner than later.  His body is tolerating the feeds and he seems to be eating pretty good too.  We have a lot of homework to catch up on and lots of thank you notes to write today before things swing into full gear tomorrow.  

School days will be interesting as Cam's feeds (we call them boosts) of 120ml take about an hour to complete right now.  We are hoping to build up speed as we go, but for now that is as fast as his little body can handle without refluxing.  This means waking up extra early every morning so he can get an hour boost in as well as eat breakfast before school.  We tried to do one constant boost last night of 240ml in 1.5 hours because he did not eat much lunch or dinner but at 220ml he was refluxing.  

The site of his tube seems to be healing nicely and he doesn't have much pain when we manipulate it to clean it or hook it up.  Carrying him is still a bit interesting as it pulls on the site if we pick him up by the underarms like we normally do so we have to carry him in a laying position.  With his long legs we often run into doors and walls and get a good laugh out of it!!

Today Cam is diligently working on his homework to try and get caught up after missing 8 days of school.  Afterwards we might go try and find some fun and get him out of the house a bit.......maybe a little Dave and Busters in our future :)

Love, 

The Schwartzbergs

Feels good to be home!

It feels so good to be home and get a good nights sleep!!!

We were discharged yesterday afternoon about 3pm and headed home.  On our way out a volunteer from the family life center told us to stop by the Valentine's Party downstairs before we left because they had really great gifts for the kids.  We ventured down to the 12th floor family life center at Lurie Childrens Hospital and met some amazing people from an organization called Holiday Heroes.  (http://www.holidayheroesfoundation.org/)  They gave Cam a box of valentines, a valentines card and a Best Buy gift card!!!  It was a great going home gift.  

We made it home and got settled in and Cam was feeling good.  His pain is under control and his appetite is increasing.  His best friend came over and played Xbox with him for a couple hours, which is the best kind of therapy for Cam!  Today we are going to start trying to get him moving around a bit again and work on some stretches so his muscles don't atrophy too much.  He has lost quite a bit of strength over the last few months so we are hoping with proper nutrition and some therapy we can get some of it back. 

This morning he woke up after a great nights sleep and had a little breakfast and now we are getting ready to do our morning supplement.  Kev and I are learning as we go, but are doing pretty good with all of the new equipment we came home with!  I am very thankful for the internet to answer my questions as they come up :)  Today Cam will be home taking it easy and is hoping his best friend will be over again to play video games and take his mind off things.  I will be out shopping for a cabinet to house all of the supplies that Walgreens seems to keep delivering EVERYDAY!

Lot of love,

Kev, Elisha and Cam 

Things are starting to look up!

After a rough start to the day, things got a little better.  We narrowly avoided a second run in with the catheter which changed Cam's mood instantly!  He light up with a smile the instant he started to go, it was the best thing I've seen in the last 48 hours.  From there we continued increasing the pace of his tube feelings and he tolerated them well.  In the afternoon we got unhooked from the IV and took a cruise in his chair to check out the views of the city and lake from the hallway windows.  Cam said the fresh air felt good!  We stopped feeding through the tube about 2pm and he was able to eat a chicken tender, with ranch of course, and  said it felt good to eat again. We rested most of the afternoon, had some great visitors and Kev andI learned a lot. We learned a lot about the tube itself and some about how we use it. We both got to practice a bit connecting it and giving meds through it and it seems to be a little easier than I expected.  I will say the thought of never having to fight about drinking medicine again is very  nice.  The nurses got us all set up with home delivery of all our supplies and even had our pump delivered to the hospital so the nurse can teach us on ours tomorrow before we go home. 

At 6pm we tried to increase the speed of his feeds to 4oz in 30 mins because we were hoping to feed by gravity rather than pump which goes much faster.  Unfortunately it did not sit well, so we will slow things down and take it one day at a time increasing the pump speed as his body tolerates it.  After a little relaxing so his tummy would settle down we played a few card games and even had a few good laughs. Although laughing is not allowed per Cam's rules because it hurts his stomach where they place the tube. LOL  Now we got cleaned up and are settling in for what we hope to be an uneventful night with good sleep.  

Thanks again for your support, it means the world to us!

Surgery is over, now comes the hard part

Well, the surgery went well and fairly quick. The GI was done much faster than expected and said everything looked completely normal. The surgeon them placed his G-tube which took about an hour.  After 2, what seemed to be very long, hours Kev and I went to see Cam in recovery. He was very groggy still but insisted that he wanted to see the tube that was in his nose so we took a picture of it and he went back to resting. ( thank god for camera phones!). 

We got settled into our room, met our nurses and got the plan for the day.  Cam was so great all day, he was really a trooper!  He spent all day laying low and never complained or said too much of anything. The ng-tube (the one in his nose) was set to drain all of his fluids below gravity for the first six hours, then they would "rack it", or put the tube in the air to see if  his body can digest his own fluids.  Then after 12 long hours of a tube up his nose it could be removed. So that's the plan...........here's how the night really went

Things were going well so at 5:30pm they racked his ng and we waited.  We watched movies and tv, cam still wasn't up for talking too much so we all just relaxed. Thanks to Morgan, jayme and ilynn we didn't have to eat hospital food :) so we had a good dinner and began our night.  Cam has been on a schedule of pain medication every 6 hours, so he was pretty comfortable.  As usual doctor after doctor comes in, checks him out tells us he needs to use the bathroom because his bladder is full.  Well, we had no luck so in comes the nurse at 9pm with a straight cath...........NOT FUN!   We got through it and finally got cam settled back in about 10:30 and by 11 he was sleeping soundly.  At 11:30 the door opens and its time to remove the ng and begin putting clear liquids through his G-tube.  All was good until Cam fully wakes up to someone messing with his stomach trying to connect the extension to his new button (g-tube opening). Everytime she touched it he was in pain and so were we. Finally it gets locked in and she removes the ng, although unpleasant feeling Cam said it was worth it to get that out of his nose.  Now for another dose of toradol and back to bed.  We slept as good as expected in a hospital with things beeping, people in and out and the deluxe recliner and sofa sleeper in the room. 

Then comes 6am.......nurse check. The first thing she say is "we need to get him to pee, it's been over 8 hours".  Here we go, Cam is upset and moving into full meltdown ( can't say I really blame him). We try everything and in the process his tube gets moved around and now he really can't go because he is in too much pain.  Back to bed we go........with no success. :(. Now we are waiting for the day shift to come in and decide what the plan will be from here.  Initially they said we would be going home today, but not sure that's going to happen at this point. 

We are just taking things a little at a time and crossing every bridge together as a family as we get to it. We keep telling Cam to keep his spirits up and it will all be over soon and he will feel better every day! 

Thanks to all of our family and friends for your love, thoughts, prayers and support. We appreciate everyone that takes a moment out of their day to think of us, it means more than we could ever express in words!