Feeding Tube Awareness Week 2017: Comfort with the unlikely

Over the past two years I have found comfort in the most unlikely places, in a world I never knew existed, with items I did not know how to say or spell just two years ago.  One of the most challenging things we had to do for Sonzee was get her a feeding tube.  To do so we had to overcome our doubts, our judgements, our misconceptions, our fears, and all the negative connotations that come with a piece of medical equipment used to feed a child.  I personally struggled with what people would say, how she would look, the fear of her never eating by mouth again, and the fact that even though I knew deep down it was necessary, it was not so obvious to others, creating a huge cause of disagreement between Sam and me.  

It is almost a year from the day we nearly lost Sonzee while in the pre-operation room waiting for her gtube to be placed, immediately we doubted our decision leading me to want to forget the day that led to this post.  I wish the memories of that day were not so vivid in my mind.  I will not ever be certain that the chain of events that were set into motion from that day are not responsible for the battles she now faces with her stomach.  However, I do not know if we will ever be able to hold anything other than "CDKL5" responsible for the fact that she no longer can process food in her stomach.  The disaster of the original failed gtube surgery and later complications of the PEG tube placement did nothing to calm any of the negativity I felt towards feeding tubes, after all, Sonzee's condition only worsened after its placement.  Then in May as her life hung in the balances yet again, while being placed on temporary TPN, we had no choice but to allow the doctors to try the intestinal tube that goes through her nose into her jejunum.  

I was vehemently against any feeding tube that went into the nose and would be on Sonzee's face.  My background in speech therapy led me to know that there was a higher likelihood of her losing interest in eating by mouth, and the mom in me still wanting life to appear "typical" to others, knew that a tube on a child's face would be no different than walking around with a flashing red blinking sign.  It broke my heart to know people would look at her and at once feel pity, stare, or feel uncomfortable.  Ironically 8.5 months later I cannot imagine her being alive without this tube and the comfort and security I feel because of the tube on her face for others to see is the opposite of my earlier fears.  

As I take her out of the car, when I park in a handicapped parking space, I proudly place her in her stroller with her stroller=handicap blue placard that is hanging.  It is obvious we belong in the spot and that there is something not typical about her.  My fear of stares has turned into comfort and excitement that I will have the opportunity to spread awareness of CDKL5 and find comradery among others who have traveled a feeding tube journey.  For me, the tube that goes from her nose into her intestine has become a safety net, one that I am actually afraid of ever taking away.  For her, she does not know much before the tube, and she does not express any discomfort from it.  Her desire to eat is no less because of it, and she would eat all day if her stomach allowed her to.  While I wish her body did not need this tube for survival, there will always be gratitude and appreciation towards this piece of a rubber tubing that continuously saves our Sonzee bear daily.

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A decision already made...

I wanted to count the number of posts that I have written that involved decision-making, and then I realized there were far too many to count.  The majority of our situations involve making choices between two unfavorable options, yet deciding which will hopefully be the least disruptive to whatever balance we have currently stumbled upon.  I know deep down the results of our choices are not based on whether we made the right or wrong choice, but it never makes me feel any better when the outcome is not what we had hoped.

Here we are again at our friendly little fork in the road.  This one both Sam and myself saw coming, so we have talked about what we think would be best for some time now.  However, discussing the potential scenarios and actually living them are entirely different.  I always think I am prepared until the day comes that the doctor looks at us and says, "I feel comfortable and I think it is time that we go ahead with XYZ, now you and Sam have to make the final decision".  I do not know why all of my confidence flies out of the window and the panic attack sets in at that moment, but it has happened every time without fail.

When Sonzee was placed on intestinal feeds back in May, it was to save her life.  Thankfully it did the job, and so making the decision to have a tube come out of her nose and go through her body was not even a smidgen challenging.  Placing a tube on her face went against everything I had wanted for her, knowing how much it would bother her, knowing that it can cause feeding difficulties in the long run, knowing that it would be an attention grabber while she was out in public and cause excessive staring.  She has lived with a tube on her face for 6 months, and while it is not ideal, we are all used to it.  Truth be told having a blinking sign indicating that I am aware something is wrong with my child actually makes me feel comforted while we are out in public.  

Today we were told that she will not be starting stomach feeding in the foreseeable future and so her GI team feels comfortable with moving the tube off her face and changing her stomach tube to a stomach/intestinal tube.  It is not to say her stomach will not work ever, but CDKL5 has not been kind to her GI system.  We have wanted this tube relocated for so long; I am unsure why I am nauseous at this thought.  I know there is a part of me that is sad that her stomach was not able to start working again by this point.  I know there is a part of me that worries once we do this, it never will.  I know there is a part of me that fears this "outpatient" procedure will go completely wrong, despite the fact that "complications are rare AND it is outpatient".  I know there is a part of me that worries this will only aggravate her stomach more, causing her more pain and discomfort and constant venting (releasing the contents of the stomach so that they don't just sit there).  I know I am afraid of tipping the boat since it has been rocking already for 6 weeks and we are finally getting our happy bear back.  What I think is my biggest challenge right now is knowing what our answer is, but fearing the outcome.

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Do not fear the tube

Every time we make a decision, we wonder if said decision will result in a positive outcome.  There have been so many times along this journey that the decisions have resulted in a domino game effect with literally no end in sight.  Along the way we have almost become numb to the negative outcomes, I say almost, because even though we say we are numb, we are simultaneously saddened and frustrated with the choice that led to the undesired outcome.  Despite the fact that even though I can assure and reassure myself "we made the best decision with the information that was presented at the time" it never quite seems to soften the blow.  However, there are definitely rare times throughout this adventure that we happened to make a decision that 100% was unarguably the best decision ever. 

Usually the results of our choices do not present themselves immediately because in the land of CDKL5 you can be assured that the term patience will hold an entirely new meaning.  Then one day something will occur and it will dawn on you that "yes indeed that was the best decision ever".  The decision for us to give Sonzee a feeding tube was never one we entered into lightly.  In summary, after months of little bear not gaining adequate weight we had a consultation for a feeding tube to be placed in her stomach.  Prior to her surgery she had a negative reaction to IV fluids that were ran too quickly and almost killed her.  During that hospitalization, she was diagnosed with an abnormal background on her EEG and Infantile Spasms that resulted in high dose steroids and so the surgery was postponed.  After many days of back and forth between many medical professionals, it was decided that Sonzee should have a PEG tube placed.  After the PEG tube was placed, we were uncertain if this was actually the best decision for the bear.  She was not gaining weight, she was having severe reflux, increasing irritability, and difficulty with not vomiting up everything she consumed.  Finally, in May we hit our breaking point and she was hospitalized for a month resulting in us leaving with an intestinal feeding tube (NJ tube).  

Sonzee has been discharged from the hospital for one month and 17 days.  She has grown at least 2 inches and has gained at least 4 pounds.  Finally, our little bear is getting adequate nutrition and she is beginning to thrive in so many areas.  I look back on my concerns regarding this feeding tube adventure and fear was ranked high, followed closely by wondering if a tube would even help or how this would negatively impact her quality of life.  So many parents have asked me if we think we made the right decision in pursuing a feeding tube for Sonzee, and I used to waver in my replies.  If you ask me today how we feel about Sonzee not eating by mouth and having all of her nutrients be given solely through a feeding tube, we will answer "Undeniably the BEST decision we have made.  Do NOT fear the tube."

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