Tubes

This is a very raw.  I usually sit with what I write a long time.  This entry is not like it.  I wrote it like vomiting it.  (Sorry...)

Iliana has a lot of tubes.  For many reasons.  I don’t know if she knows what they are all for, but she is learning to talk about them.  And that is powerful because her simple words allow us to experience her perspective.

We have been talking about this admission for a long time.  We have been waiting for it since January.  Praying for it since March.  Finally, preparing for it since May.  And finally, here we are.  Everyday for the past two weeks has been a count down.  “Mommy I don’t want to go to the hospital and have a tube in my hand.”  Hard to explain to a three year old why we do things we don’t want to do.

When Iliana was born, she didn’t have an esophagus.  The tissue that she had ended in a pouch.  She was hooked up to suction so that she would not drown on her own spit.  She was fed through a mic-key button in her tummy.  Then finally, she was connected and we believed that she would be able to eat, drink, and be free of all the tubes.  She never healed from the surgery because there was simply not enough tissue to connect to her stomach.  So, she came home with a feeding tube  in her tummy, a surgical wire that came out of her nose, and a suction tube that came out the back of her chest.  Our family had to adjust from the furthest thing from normal.  We became protective of her tubes because they were Iliana’s and she needed them.  They were part of her.

When she was almost 9 months old, the surgical team decided that the connection had officially failed.  She would have a gastric pull up.  Her stomach now sits behind her lungs.  In order to do this surgery, our team of very gifted surgeons had to take apart her chest cavity and abdomen.  The surgery was close to 16 hours.  It is on par with a heart transplant.  They gave me back my baby, a badly brusied and swollen child.  She was on an oscillator that breathed for her because one of her lungs had been knicked and collapsed during the surgery.  She had a breaking tube.  A tube to drain the blood from her nose.  A larger suction tube in her back.  She had two IVs.  And she stayed this way, unresponsive, for almost two weeks in PICU.  During the second week, two other children died in PICU, and I was thankful that she was still there, somewhere.  Again, we believed that she would learn how to eat and gain independence from all these tubes and machines that she needed to live.  We were assured that she would be tubeless by the time she was 18 months.

By 18 months, she was having more studies.  Swallow studies, upper GIs, follow throughs.  She was not eating.  In fact, when we would try to feed her, she would vomit.  Some nights she went through three pairs of pj’s and I could not keep up with washing her sheets.  Everyone was baffled.  It was maddening for her surgeon.  Out of nearly a dozen cases, she was the only one not eating.  It was discouraging for us.  This is not what we had hoped for our amazing daughter.

By two she had two more major surgeries.  She had learned that she didn’t like IVs.  Yet, she continued to be unable to eat.  And she continued to vomit.  One a good day only a few times during the night.

And, by age three, we learned that her gut did not function normally.  We had spent so much time and energy evaluating how her stomach had worked, that we had all looked past her intestines.  She is not able to poop normally.  She is on adult dosage of miralax, twice daily through her j-tube that keeps her fed.  And finally, she has nightly enemas to force her body to get rid of the excess.  She cries every night when we do this.

She has had a lot of tubes in her life.  And to her credit, she is a brave little girl.  You have to only look into her untamed eyes to see a fierceness in spirit.  She is also like a pixie, floating from person to person in life, enchanting them with her smile and not listening to a thing they say.  She will wrestle her brother, tube, nail polished fingers, princess dress and all.  She is always on her tip toes.  She dances all the time with her tube dangling around her feet. Sometimes in her spontaneous bursts of energy, she pulls her tube out of her stomach and our lives stop until have it placed back in the hole in her skin that goes directly to her stomach.  She cries for this also because now she is able to tell me that it hurts.

I now really hate the question, “How much longer do you expect her to be on the tube?”  I know the question is being framed out of curiosity and concern, but we have hoped so many times that she would be able to eat normally instead of being pumped with food 18-21 hours a day.  But this is not the case as we don’t hope for life without the tube anymore, we hope to understand why Iliana’s body doesn’t work. 

Tonight, we are preparing for one of the hardest things we have ever asked her to do.  She is getting a gut clean out for the fifth time in her life.  July 11^th, they will take her to the OR and place live cathaders in her body.  One will go down nose tracking the movement and response to where her small intestine ends.  The other will be placed up her bottom to the start of her large intestine.  During these three days, she will have no sedation or pain management, nothing that would slow her gut down further.  She will also have her IV and jtube.  We are asking so much of her.  We have to do this test to determine what in her digestive track works and what fails her.  She is tenacious.  I know she will be able to do this in spite of the discomfort and challenge.  Our hope is to leave on Friday or Saturday with knowledge of Iliana’s body function and determine the next steps to help her.

At the same time, as I was tucking her in her hospital bed tonight, we sang her favorite song from church, I wish you could see her sing it.  She holds up her small arms that she believes to be beastly expressions of strength and with a full cheeked smile and dancing eyes she said, “My God is so BIG (emphasis… ) so strong (with furrowed brows) and so midy (mighty)…. There’s nuffing (sweeping her arms in a frantic motioning of a safe as her IV tube snakes wildly) My God can not do.” 

She speaks truth.  Tubes and all. 

I have not read this or edited it.  I will do that later, so please know this is my first hack at explaining this… so please read graciously