You will have significant experiences.
I hope that you will write them down and keep a record of
them, that you will read them from time to time and refresh
your memory of these meaningful and significant things.
Some may be funny. Some may be significant only to you.
Some of them may be sacred and quietly beautiful. Some
may build upon another until they represent a lifetime of
special experiences.
- Gordon B Hinckley

Wednesday, May 18, 2011

The Surgery...

Saturday, December 12, 2009

Dear Family and Friends,

Thank you for being patient with us as regards information about Everett.  It has been a difficult week, full of more ups and downs than you can imagine.  Thankfully, my parents and Zac's mom have been with us in LA, helping to keep our spirits lifted and full of hope.  Today, I woke up with renewed hope, knowing deep in my heart that the worst is behind us.  As Everett's surgeon told us the day he had surgery, "Your darkest days have passed.  You can relax a little.  He will get better every day."

Everett arrived at Children's Hospital of Los Angeles (CHLA) around 11pm on Monday after an hour long helicopter ride from the airport.  By the time we arrived, he was already back on the ventilator, overstressed and tired from the day’s tests and long trip.  The Pediatric Surgeons had evaluated him and determined that his case wasn't so emergent that he needed surgery that night.  So we were put on the overflow surgical list for Tuesday.

CHLA is an interesting and very LARGE hospital, complete with residents, fellows, surgeons, nurse practitioners and everyone else.  It feels a little impersonal and sometimes we wonder if we are like cattle, but several people have told us that this is the place to be.  CHLA doesn't refer patients out...meaning, if they can't treat it here, it can't be treated anywhere.  So that's a great thing!!!  Due to the Swine Flu, their visitation policy is on lockdown.  Only Zac and I and our parents are allowed to see Everett, but only two at a time.  Every person in the building is wearing color-coded badges, and you have to stay in your color-designated area.  On Tuesday, my parents tried to sit in the outpatient waiting room because the lobby was so cold and they were promptly asked to go back to where they came from.  They also charge $7.00 a day for parking.  We asked if we get a discount seeing as we are paying a medical bill, but they laughed and said "No.  Everyone pays, even the patients."  We are country bumpkins to be sure!

Everett went to surgery unexpectedly around 3pm on Tuesday.  Because of a miscommunication about where Zac and I were waiting, we didn't get to see him before he left.  So we had no idea how long this surgery was going to take.  It ended up lasting an excruciating 4 hours!  With every minute that ticked by, we got more and more anxious.  But we met some lovely parents in the waiting room who were old pros at the surgery thing with their daughter.  They did a great job of distracting us and offering reassurance.  Finally we got to meet his surgeon, who informed us that while the surgery went well, the results were the "worst-case scenario." 

Everett had perforated his bowel in two areas of the small intestines.  As a result, he had stool in his abdominal cavity.  The surgeon guessed that the actual injury occurred some time ago because Everett's immune system had already begun to "wall off" or encapsulate the stool.  In addition to this, he also has a condition called necrotizing enterocolitis.  This is a bacterial infection of the bowel that is common in preemies.  While they don't know the cause, it seems to be linked to the introduction of formula into the preemie GI tract.  Looking back, a lot of Everett's problems began when they started mixing his breast milk with formula.  But who knows for sure.  This condition has caused his entire GI tract to be very inflamed and red.  As a result of this inflammation, his bowel has begun to stick to itself and surrounding structures, mainly his liver.

In order to treat the areas of perforation and the section of bowel that is adhered to his liver, the doctor had to bypass a 16cm section of Everett's bowels.  Because the bowel was so angry and inflamed, she was unable to sew the two sections back together.  So Everett has ended up with something called an ileostomy.  This is when the small intestine exits out through the abdominal wall and skin, rather than connecting with the large intestine and ultimately, the anus.  Basically, Everett will have bowel movements into a bag attached to his tummy.  The section of bowel that was attached to his liver could not be removed because the preemie liver is very fragile and any manipulation would have resulted in massive hemorrhage and probable death.  So this section of bowel also exits through his skin.  While it is not attached to his remaining intestine, it is still receiving a blood supply and will continue to produce intestinal secretions which will also be collected in another bag attached to his tummy. 

The surgeon is optimistic that Everett's remaining bowel is long enough that he will be able to receive adequate nutritional absorption from breast milk.  But it is really a wait-and-see type of thing.  If all goes well, he could be back at SV in three weeks, but Zac and I have prepared ourselves for more like six weeks, so as not to be disappointed.  The good news in all this is that in four to six months, Everett will undergo another surgery to reverse the ileostomy.  His bowels will be reconnected and he will, hopefully, function as any healthy child should. 

You can imagine how are hearts are aching for our little boy.  This is not what we would have chosen or hoped for him.  But this is our path and we are thankful that at least treatment exists.  Today, he is doing well.  He is swollen from head to toe and looks like an overcooked butterball turkey, but at least he is still with us and is starting to heal.  His surgeon said AGAIN, "He is a miracle!"  She was shocked that he was so devastated on the inside but not acting very sick on the outside.  He is strong.  He is courageous.  He is our amazing baby!!!

We thank you for your prayers!  I will keep you updated on specifics to pray for, but today, just pray for good days and progress forward.  Thanks for the encouraging emails and phone calls.  We gather strength from those around us, who lift us when we fall.  We are thankful for our family and friends...but most of all, we are thankful for our little boy!!!

The Bollinger Family

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