Tube Be Gone aka "Tubie Gone"

On January 21st, we were all but certain that Annika's feeding tube would be removed, so we declared it Tube Day.  Our basis for this was in the Dr.'s words from the previous visit, "If she continues to do this well, we'll take the tube out next time!"  And she was doing more than well.  James took the day off, I gave the kids the day off from school, and we happily picked up our house together so we would have a nice place to celebrate Tube Day when we got home.  "Spirits were high" is an understatement.  This day marked a major milestone in the life of our family.  Although Annika had not been using her feeding tube for a few months, actually removing the tube from her stomach felt like the exclamation point at the end of this chapter in our days.

Skip ahead to the Dr. visit.  Annika IS doing well, and it IS time.......just the Dr. feels a little uncomfortable removing the tube today.  She just had another little girl have a tube removed and the hole in her stomach leaked and leaked and never healed, after having the tube for only 4 months.  Annika had hers for nearly two years, so...what are the chances of a natural closure?  Why not skip all the headaches of leaking and just go straight to surgery where the results are certain?  When our Dr. saw how sad we were, she gave us the option to remove it that day...but it was against her advice.  So we didn't.

I don't think I've ever heard my family sit so quietly as they sat that day on the drive home.  Only sad exclamations pushed the silence aside on occasion, "So it isn't really Tube Day!"  "We did all that cleaning for NOTHING!"  "We probably have to do school now!"  "I'M HUNGRY!"  James and I barely spoke.

No, I didn't make them do school, but nothing could replace the joy that was lost.  We were ready to celebrate with games and laughter and decorations and food!!!  And the celebration had been postponed.  So what to do today?  Nothing much.  We played mariokart and bought a dozen donuts to drown out our sorrows.  Unhealthy coping mechanisms-I know.  E-mail me about it.

The big question became, "When is Tube Day??"  I couldn't answer.  I was told to wait to hear from the surgeon.  The surgery department finally called, SIX days later, to say that they could schedule Annika's consultation with the Dr. for the end of February and the tube would be removed who-knows-when later.  Oh, but wait!  Our Dr. had mistakenly referred her to the wrong region. 
"Great!" I thought, "Maybe the right region will get her in sooner."  I sent a text off to our Dr., but heard nothing back.

The next day, the appointment center called, "I'm sorry to say, your Dr. had a family emergency and will return to the office the end of March.  But you still need a referral in order to have her seen in Orange County."
"Ok, great.  Should I call her primary care physician?  Can he refer her?"
"That might work.  I don't know.  I'll send a message to another GI doctor and see if he'll do it."
"Ok, what about the surgeon that placed the tube.  I have his number.  Is it appropriate for me to text him about this?"
"Yes.  Do that."

Ok, so I did and he texted me back right away, "I'll have my nurse call you."

Fabulous!   We're getting somewhere!

The phone rings and I jump up hoping to hear from our surgeons nurse, only to have the lady from the appointment desk explain to me that things really aren't looking good in getting Annika referred to Orange County.  What?  This is really a hard thing!

So, the nurse calls an hour or so later.
"When would you like to schedule this appointment?"
"Anytime!"
"Ok, how about tomorrow?"
"Sounds great!"
"But we still need that referral.  I can't schedule it without a referral."
"You heard me say that her Dr. is gone through the end of March?  Out of the country?"
"Yes, well.  We need it."
".............................................how do you suggest we get it?"
silence
And then.
"She was seen by this doctor for the g-tube placement?"
"Yes."
"How about we don't call this a consultation appointment but a follow-up from the last one and we skip the referral altogether?"
"Yes!  That is exactly what should happen!  Let's do it!"

And so, the next day, Annika woke up with a fever of 101, but there was no way I could cancel that hard fought for appointment.  Late in the afternoon, Annika and I trekked alone to see Dr. Lau.  She was ready to show "Doctoh Yow" her tubie and to do what he asked (and her fever had gone down).  Dr. Lau entered the room saying that 60% of removed tubes heal on their own.  He was willing to schedule her for surgery, but in his opinion, it was better to try a natural healing first.  I 100% agreed.  I've already seen the fear in this little one waking up from general anesthetic three times and she is one miserable cookie.  Enough trauma for my baby!

And then it happened.  I lay Annika on the bed in the room, turned around to grab her pacifier, and by the time I gave it to her, her tube had been removed.  I didn't take any pictures and I was the only one there to give a small cheer.  The doctor taped some gauze over the hole in her stomach and that was that.  I snatched her up as she cried in fear.  She really didn't understand why tubie had to go.

In an attempt to both distract and celebrate, I walked her down to the cafeteria and bought us a shared cup of strawberry and vanilla frozen yogurt.  We sat down to eat it just outside the cafeteria doors near some plants.  This little one, who wouldn't open her mouth to drink even a drop of liquid a year and a half ago, stood by my side on the cement and licked the yogurt off her spoon.  It was a quiet time.  We took pictures.  We laughed.  We shared bites.                     Just her and I.  

I looked up at the building towering above us and could pinpoint the exact rooms where, almost two years earlier, she was a tiny little one with so many newly discovered problems.  Here I had learned about my baby's heart failure.  I had waited tearfully for genetic testing to return which would tell me if she had a genetic disorder.  I had had an endless bombardment of conversations with so many different doctors and specialists.  I had learned how to use and care for an NG tube and then a gtube.  I had feared for my baby's life on the day the doctor panicked over her test results.  I had seen her bloated and struggling for breath after being IV'd too many fluids.  I had held her down for nearly 4 hours as nurses struggled to find a vein for an IV.  I was told, on my birthday, to never even think I would nurse my baby again.  I had walked every floor and knew every color scheme.  I had wandered every path around that hospital.  I knew the name of the guy who took my meal orders and had ordered every item on the menu.  I had set off the alarm and shut down the hospital three or four times after the nurse failed to disarm Annika's lo-jack before our daily walk. So many decisions, questions, fearful moments, tears and prayers happened right above where we sat and, although James and I walked this road together, for the most part, the time in the hospital was just her and I.

And so, somehow, although Tube Day dawned on January 29th and we didn't know it, although the whole gang missed out on the celebration at the removal and there was not a bit of a party that day, somehow....somehow....it seemed perfect.

After we finished our frozen yogurt, all Annika wanted to do was run to each rock and stand on it, "Yook, Mama!"  And at each fountain, as she touched her hand to the water she would twist back to make sure I was following.  And at each bench we encountered she would pat a spot for me to sit and ask me to help her up beside me.  And we sat for about ten seconds and kept going because there was so much to explore and she was so free and full of vibrant life!  Life!  This precious gift.  I laughed every time she screamed and squirmed to be released from my joyful hugs.  "Scream away, you little life!"  And that day, too, was a precious gift to me.  A perfect brushstroke in the huge painting that is God's big plan.  Although I don't understand all the "why's" to the place and the path that He has brought our family on, I can genuinely praise Him with all my heart because I feel and appreciate the blessings more than ever before.


Ecclesiastes 3:1-11

"There is a time for everything,
    and a season for every activity under the heavens:

2     a time to be born and a time to die,
    a time to plant and a time to uproot,3     a time to kill and a time to heal,
    a time to tear down and a time to build,4     a time to weep and a time to laugh,
    a time to mourn and a time to dance,5     a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,6     a time to search and a time to give up,
    a time to keep and a time to throw away,7     a time to tear and a time to mend,
    a time to be silent and a time to speak,8     a time to love and a time to hate,
    a time for war and a time for peace.

9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end."

AMEN!