To Be Brave.. a Non Disney Version

DISCLAIMER:  I am sorry this took so long.  It was a significant amount for us to process.  Overwhelming.  

I am not certain that bravery is innate.  I do believe that resilience is a learned behavior, but to be truly brave is rare.  Almost as rare as the color of Iliana’s eyes.  Those of you who have looked in her eyes understand.  Most of you still don’t know exactly their color.  Just like I am incapable of describing her bravery.  Both are Iliana.  Both are beautiful.  The rest of the world is busy telling Iliana how pretty and cute she is.  She knows this is true.  So, our dialogue is different.  I ask her, “Show me who is (amazing, smart, strong, fun, creative) brave?” She rams her double-jointed thumb against her chest.

The days that we were in the hospital were challenging.  I am challenged by her strength through those days.  I am thankful for a conservative doctor who practices medicine compassionately.  I am also thankful for his nurse that showed kindness every step of the way to Iliana and me. 

Wednesday morning, we went to the OR at 6:30.  We were the first case for Dr. Cochine.  We endured one of the most clueless prep nurses that I have ever encountered.  A short version of her disconnection from our story was her looking at Iliana and saying, “She looks so normal.”  My curt response to her insensitivity was, “She is better than normal.”  I was thankful when Dr. Cochine came in.  Again, he talked us through what the expectation of his time in the OR.  He taught me about the catheters.  Imagine the diameter of a drinking straw being woven through your entire digestive track.  I held Iliana tightly and prayed, as many of you did, for her to have strength beyond measure to endure what she would have to do.  She was taken back, and I walked alone into the waiting area.

Placing of both catheters should have taken thirty minutes to an hour.  Her placement took almost three hours.  When the doctor came out, I could tell that her was not pleased with the news.  The test had not even started, but after placing the lower catheter in her colon he reported that it is huge, floppy, and dilated.  As he was explaining, he said, “there might be a need for..” I cut him off, “a resection” He hesitated and said, “Ostomys can improve their way of life.”  He believed that she would loose her colon.

I sat in the waiting room, as I saw the rotation of doctors came to meet with parents about he progress of her tubes.  I was angry as this particular mom was crying and being dramatic over her healthy child having tubes.  I want to be compassionate in this moment.  However, it was very possible that my daughter will loose her colon, which has lifetime implications that eardrops will not fix.  I also sat in anger.  I thought again of the girls’ birth mom, and exactly what her choices have cost our daughter and our family.  I wanted to sterilize her with a spoon in that moment.

I was able to go up with Iliana to the room.  Jeri, Dr. Cochine’s nurse, another GI nurse, and the charge nurse were all in the room.  Iliana was the second case to have her colon studied on this new machine.  The shaft of the catheter that was in Iliana’s colon held six receptors that measured and documented the nerve responses.  The computer screen showed immediately all readings; each receptor had its own line.  Everyone was there to learn.  Including myself.  As in all instances of the girls’ health, I needed to understand what to look for.  So, I continued my audited RN education.  No one expected to see any indication of promise in this study.  So, we waited.

Iliana did everything that she was asked to do.  Everything.  She even tried to eat and tolerate a higher rate.  She was brilliant.  Her colon after two hours into the test still did not show any capability of contraction.  In cases like hers, they then feed a very high dose of Docalax through that catheter.  Within twenty minutes, Iliana’s colon had five forced contractions.  They were so strong that she acted like she was going to vomit.  It was so hard to see.  They brought a bedpan, and Iliana evacuated blood.  My eyes stung.  As parents we want to take pain from our children although such a transfer is impossible.  I was overwhelmed how excruciating this moment was for her, but I stood by her, holding her hair and trying to encourage her that she was being so brave.  Her doctor was so encouraged that she was capable of having ANY contractions.  This meant that we could give the colon a year before making any hard decisions to change her life by removing it.

(Even as I type this, Iliana is in her bed singing her song.. “My God is so BIG… so strong and so mighty… there is nothing my God cannot do.”… Amazing timing, little girl!!)

An hour later, he was able to remove the lower tube.  And I could see the relief in her body.  Sparks of Iliana’s personality surfaced in momentary glimpses.  She lay back in bed, as I leaned forward and we locked tired eyes, I said, “Show me who is brave.”  She weakly put her thumb up against her chest.

Sleeping was hard for both of us that night.  Her upper cath was so uncomfortable.  If she moved wrong, she could feel a pulling in her body.  6:30 came soon, which was probably good. Jeri came to set up the receptors to the machine.  At 7:30, we had to start the test over, which meant that the test would take longer.  The small intestine challenge takes longer because “fasting” contractions are an indication of the health of the upper bowel.  And she had to have two eating “challenges” during this test.  So this test was twice as long.  In the midst her test, her IV went bad and there were other hiccups.  But it was less dramatic than the previous day, and they allowed her to pull the tube out of her nose herself.  She did so without flinching.  You tell me; who is brave?

So, all this to learn Iliana’s body.  We had significant learning.  Most of it was expected, and discouraging.  Excuse me while I go scientific on you.  (Time to tune up your inner geek)  Iliana has significant motility issues.  The GI system is a pump like the heart.  All muscles and nerves have to fire off with coordinated motion so that things move in the right direction for the body to function.  If you think of Iliana’s small intestine a long tube, take one small section of that and think of it this tube in segments of 1, 2, 3, 4.  In your body and mine, there is a well-coordinated motion as food moves through our body of a series of contractions in these segments.  1 fires off then 2, then 3, then 4.  In Iliana’s body there are inverse contractions.  2 fires before 1, 4 before 3.  Her entire digestive track malfunctions like this.  Currently there are no medications to help regulate her nerves.  Children’s Mercy is appealing to the FDA to use two different drugs for “compassionate dosage” for three other kids in the midwestern area.  Iliana would be the fourth.  They first have to get approval for the hospital to use these medications, and then they present a case for each individual child.  We are a few years away from the FDA hearing why this medication would help Iliana.  In the meantime, Iliana will struggle to eat and be dependent on her feeding tube.

Her colon is sick.  And it will continue to make her sick until she has her next surgery.  Yes.  Next surgery.  This will happen this upcoming week.  The plan is to create a cecostomy in her colon.  This is a button, like a Mic-key button, that will allow us to flush her colon daily with powerful medications from the top of her colon down.  Then, we wait for a year. 

Please pray.  Please.  There is a small chance that this surgery will allow the colon to heal from being badly damaged over the course of her life.  It will never be fully functional, but we are hoping for enough healing that she would be able to avoid another very long hard surgery in the future.  Please pray that HER surgeon that knows her body better than anyone else will be able to put her on his schedule.  He is leaving in August to accept a Chief position in Wisconsin.  Damn Wisconsin. 

Iliana continues to dance around the house today with her backpack and tube dangling around her feet.  She continues to smile.  To sing.  To push my patience.  To be who she is in spite of her body.  In spite of her limitations.  She is better than normal.  She is brave.

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