Pole Break: In Honor of Feeding Tube Awareness Week

Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?

Well, we play a very similar game every single day, only it's called "Pole Break!"  We love this time of day, it's when our favorite little "Tubie" gets his window (for my non-tube friends: that's the term used for getting a break from your tube feeds). 

Imagine being two years old and attached to an IV pole for 21 hours a day! 

Our little guy is now fed through a GJ-Tube, which means one tube feeds formula directly into his intestines while another tube lets the pressure vent from his belly. If his vent bag is at a lower level his vent bag will fill up with fluids depleting him of much needed daily fluids.

You can feel the excitement build and watch his little eyes light up when we say, 

"Cohen, do you want me to unplug you?" 

He usually replies with a squeal of joy. Then we stand back... when those connections come off he runs like the wind. It's wonderful to see him so happy.

Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him.

Someday little man... I promise! 
I know in my heart this is not forever! One of these days we will have a huge celebration. I have decided that we will mark the occasion by having a 

DESTROY THE POLE PARTY

In order to be invited to the grand event you must come up with a creative way to destroy this pesky pole!

Don't get me wrong I have the utmost appreciation for the job it is doing to keep my child alive, however I eagerly await the day when I can witness it's demise, a sediment that I am sure I share with our Tubie Buddies' mothers.

How can I love something so much that I desperately hate? Because it's my son's life source and for that reason alone I will forever be indebted to it. And as much as I love what it has given us... I will love seeing it go away even more.

But for now we will keep playing our game and enjoy the gift of our "window". 

For more information on feeding tubes visit our friends at Feeding Tube Awareness 

If your new to the feeding tube world and use a kangaroo joey pump you can watch our how to video here...

Happy Feeding Tube Awareness Week Tubie Friends.

Together we are teaching the world the true beauty of 

feeding tubes!

Feeding Cohen: How To Setup a Kangaroo Joey Feeding Pump

Our littlest bullfrog doesn't do things conventionally... so why should eating be any different.  For the past nine months he has required enteral feedings to survive.  He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally.  Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.  

The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first.  We were just kind of thrust into this new life and given very little instruction on how to navigate through it.  Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!    

I have created a video, which explains the basic steps of setting up an enteral feed.  I hope this information will become a resource for others that are trying to feel their way through this process.  

Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one. 

1 Peter 5:7 Casting all your anxieties on him, because he cares for you.

Life With An NG Tube

Our Little Puzzle: Cohen Update

Have you ever spent countless hours working on a puzzle only to find out as you neared the end there were valuable pieces missing?  Sections come together but without these key pieces the image is lost... and so the frustration sets in as you frantically search for those clues necessary for revealing the BIG picture.  Now hold that thought!

Meet our little puzzle....

And quite the complicated one I might add, but with every new appointment we learn more and more about our little superhero.  Our doctors are doing their best to help bring as much clarity as possible to our situation.

One of the most difficult things I have heard thus far is....."We may never know why."  I am a person who likes to research and find answers to problems and it is hard to except that sometimes there just aren't any.

I spend countless hours pouring over my sons's medical records, lab reports and searching for information on the computer, it is my job to keep looking!  When you are dealing with something rare and undereaserched you become the expert for your child!  I have learned some valuable lessons along this journey...

~Even with well-intended physicians you may not receive the best advice, in fact in our case it was quite dangerous.

~Although I don't posses a medical degree I am the expert on my child's illness, not discounting the valuable knowledge of medical professionals but every doctor can't be an expert on every illness.... so we searched for ones experienced with our disease.

~I must always listen to my instincts.... going against incorrect medical advice is not only acceptable but my responsibility.

~People aren't perfect and there are no exceptions in medicine, so I must be prepared for mistakes and have the courage to confront those making them (despite all that was written in Cohen's chart about NO FOOD and the allergy alert bracelet on his leg stating FOOD....they still tried to feed him).

~I have the most amazing support system of friends and family and I don't know where I would be without their love and generosity.

~God's grace is ALWAYS sufficient and will see me through!!

Our Newly Discovered Puzzle Pieces
We met with our new GI, Dr. Putnam at Cincinnati's Children Hospital and I found myself hearing some familiar words.  Much of what he said confirmed what our allergist at Johns Hopkins had stated, but he went a step further.  He was very honest in his explanation.  He discussed with us what is known about FPIES, there is far more that they don't know and may never know, and that they have theories that desperately need research.

Here is the break down on what he believes is going on with OUR superhero:

• Cohen is a severe reactor and we may never know why he reacts to so many foods.

• Refereed to him as a severe hypersensitive immune responder: 

So in other words... When we get sick our bodies respond by creating antibodies so that it will recognize the illness the next time and be able to fight it off easier (pretty awesome handy work God).  For some reason Cohen's immune system responds to food the same way and according to our GI the more we feed him the sicker we are making him.

• Dr. Putnam's theory:  Stop all food trials for as long as we can in an attempt to reset Cohen's immune system and hopefully reintroduce foods later without reactions.  There are no guarantees but we have nothing to loose.  He was very passionate about educating people that children like Cohen only get sicker the more we try to force food on them, which only supports why he is so resistant to eating food. To Cohen FOOD = Pain

• Then we asked the burning question: Are we dealing with an extremely severe case of FPIES or is there more going on?  His response was, "Yes, that is our big question and we will try to figure out more but unfortunately, we may never have all of the answers."

Where Does This Leave Us Now?  
It was determined that Cohen urgently needed a G-tube placed because of his increased risk of aspiration as well as other concerns.  After the surgery we were admitted into the hospital and began the daunting task of gradually increasing formula feed rates and concentrations.  Cohen didn't tolerate the faster rate at first and began to loose weight.  We finally managed to increase both and stop the weight loss, however we never regained any.  Since home he has lost a little more and is weighed weekly by his pediatrician and monitored for belly distention.  Our little man has also been having more issues with blood and mucus stools, which only leaves us with more unresolved questions.

In our FPIES world we are usually left with many uncertainties, filtering through symptoms as best we can.  This is very difficult for the type A in me (yes, I have a slight obsessive compulsive side.... there you go honey I admitted it).  I like concrete answers, written in black and white.... this living in grey is a struggle for me.

So I have learned to triage....deal with what needs attending to at that moment and not dwell on the unknowns of this illness.  I am a work in progress, learning to turn things over and worry less...

God, grant me the serenity
To accept the things I cannot change,
Courage to change the things I can,
and wisdom to know the difference.

We will continue to fight and advocate for our little superhero and diligently work to keep him thriving.  Life isn't easy but it isn't suppose to be.  Our situation makes us far more sensitive to others and what they are dealing with.  My older children look at life differently because of the strength that they see in their little brother.... what a beautiful reminder for all of us that true joy doesn't come from this world!!!

Life With a NG Tube

Dawn hadn't finished making it's debut when somewhere out of the ten pairs of eyes peering my way came the question.... "Are you okay with him going home with a NG tube?"    This was a brand new place in life for me and I wasn't sure what to say, but then I heard the words "I will do whatever is best for Cohen", leave my mouth.  The room became a sea of nodding heads and voices that murmured in agreement, "We feel this is necessary for your baby to thrive properly".  

The next question that came through the crowd of white coats was, "Do you have any questions?"  Do I have any questions????   I looked around the room and suddenly I had immense compassion for the zoo animals that find themselves gawked at through cages on a daily basis.  Confusion raced through my mind... how did we end up at this place in life?  I gave birth to a beautiful healthy baby boy and now somehow we are in a hospital room surrounded by well intended individuals that appear to have as much concern over my child's well being as I do.  The long week in that small sterile room was beginning to take a toll on me and I was ready to get my family home. 

Just a boy and his pole!

It was pitch black outside and quickly approaching midnight when the headlights finally pulled into my driveway. As I opened the door the man handed me a large bag of supplies and an I.V. pole then he disappeared as quickly as he came.  I stood there in my living room staring at these foreign objects that were left in my care.  I opened the bag and began to fumble through the instruction for putting together this vaguely familiar equipment. It resembled the hospital machines that I spent day after day with... but this was different, now I am the one responsible for these beeps and buzzes.

When I reflect back on all of those faces and the questions that they posed I realize now.... that in all of my educational experience there was nothing that had prepared me for this part of our journey.  I have cared for the needs of four other little ones and thought that I had seen or experienced most everything.... until now.

I have been left to my own devices  for figuring out this new way of feeding my sweet boy.  Prior to leaving the hospital I was given a brief lesson on how to run the feeding pump but that was the extent of my tutorial on the matter.  I am teaching myself as we go and much to my surprise there is more to it than I had imagined.  I'm not sure what I thought it would be like... to be honest I couldn't see that far down the road at the time.

I am grateful for a wonderful on-line community of parents that are walking this very similar journey with us.  It has been through their direction that I have been able to learn how to care for my child and his feeding tube.  When we began this FPIES adventure I frequently saw the enduring term "tubies" used in reference to children with severe feeding issues, but there was a line of separation for me.  Feeding tubes happened to other unfortunate children with FPIES and I rested comfortably knowing that this would never be a reality for our little guy (those things happen to other people).  It was never on my child-rearing radar that I would find myself with the unique challenge of caring for my own little "tubie".  

I am learning something new every day about properly caring for Cohen and his tube.  With the help of some very experienced mothers I was able to learn a new way of taping his tube against his face.  Cohen has been wearing his "no-no's" since he left the hospital, my little opportunist would seize every chance he could to rip that plastic nuisance off his face.  Although, it broke my heart to keep him in those arm guards I knew that it was a necessity, the pain from ripping out his tube would be far greater than the discomfort of the restraints.

   

Last night was the first time in two weeks that my sweet little man was able to enjoy the freedom of sleeping without his "no-no"s"...   his mama finally learned how to properly tape the NG tube so that he can't pull it out.   My on-line research also opened my eyes to the possibility of allowing my little guy the ability to be mobile during his HOUR long feeds.  His new back-pack arrived today in a highly anticipated, much-like-a-Christmas package shipment excitement (seriously there were shouts of fanfare as the truck pulled up and a greeting committee of four little package ushers).  We are all a little excited at the opportunity for freedom that this gives our newly waddling toddler.

Not quite digging the back pack yet!

Apparently someone has been watching his
doctors and has learned a thing or two!

Finally, just as I am beginning to feel like I am getting a handle on all of this... the UPS shipments begin to roll in.  Big Brown has been quite the frequent visitor at our home lately.  Once again I am hit with a whole spectrum of emotions as the huge pile of supplies and equipment create a new realization for me.... turns out that we aren't exempt from this reality after all!

2 Corinthians 4:8-9  We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed.                                                                                  

http://www.feedingtubeawareness.org/index.htmlhttp://www.feedingtubeawareness.org/index.html