Friday, January 11, 2013

New Year, New Challenges

Well family and friends, Gavin fought hard and survived 2012!  It has been so amazing having him home and seeing his personality grow as I watch him rise and overcome obstacle after obstacle.  We were hoping that 2013 would be our road to recovery, but it looks like we have a few more hurdles to fight through.

Gavin had been doing well and finally gaining weight.  Two weeks ago, Gavin began vomiting all of his feeds and a significant amount of bile.  I laid him down for a nap and he woke up an hour later screaming.  As I picked him up and prepared to change his diaper, I noticed that his stomach was severely swollen.  So much so that the skin on his abdomen was stretched to its limit.  I called 911 and while I spoke to the operator I was rushing to dress Lorelai and pack a diaper bag.  The ambulance showed up moments later.  I piled into the ambulance with Gavin and Lorelai and headed to the ER.

After getting processed at the ER, the medical team there began pumping Gavin's stomach.  Within two hours, a surgeon came to discuss Gavin going into surgery ASAP as they expected x-rays to show either an abdominal obstruction or a malrotation of his intestines.  However, the x-rays showed nothing.

For a week and a half, Gavin went through multiple x-rays, contrast studies and GI exams.  Nothing was conclusive.  In the meantime, he was unable to eat as his digestive system had shut down and quit working for some undetermined reason.  He lost a significant amount of weight.  So much so that you can now see the wires that were used to put his chest back together after open heart surgery through his skin and you can see the fibers of his abdominal muscles through his skin.  He is now on IV nutrition in an effort to put weight on him.  My heart broke watching my son have to go without food for so long.  But medically, it seemed to be the only choice.

The only option the doctors could think of was to test Gavin for Hirschbrung's Disease.  Nothing in his history would indicate the disease, but they needed to rule it out.  As Gavin's surgeon said, Gavin did not read the textbook on Hirschbrung's.  He does indeed have it.  At least part of his colon has died, and it is possible that part or all of his large intestines is as well.  This will require a two part surgery.  Monday, the surgeons will do a colostomy.  Gavin will have a colostomy bag for at least a year, possibly longer.  Once he is of an age, weight and health status that makes conditions favorable, he will go in to have the parts of his colon and intestines that don't work completely removed.

In addition to this, Gavin's echocardiograms have consistently shown that the pulmonary artery from his heart to his left lung is half the size it should be.  Because blood flow to the lungs directly affects the rate and degree to which the lungs develop, Gavin will need a stent put in that artery to ensure that his left lung receives an adequate amount of blood.

I will not go into my grievances with the Marine Corps at this time, as this blog is to focus on Gavin's story and the amazing, resilient baby that he is.  But I am happy to share that Chris should be on his way home soon to be with us through Gavin's surgery, and hopefully through his stent procedure.

These past two weeks have been indescribably difficult for our family.  Not having Chris here with us through these times feels overwhelming and unbearable most days.  I can't imagine having to be half a world away while my son struggles as Gavin does.  All we can do is pray, fight the fights we can to do what is best for our family and our son and keep hope that some day things will be made right. 

Gavin has all of the nurses falling in love with him again.  He loves being cuddled and it isn't hard to get attention when he smiles the way he does.  He has such a pure, innocent soul and I am so blessed and honored to be Gavin and Lorelai's mom.   Lorelai does great at the hospital with Gavin.  She loves giving him kisses and is very adamant that he will have a pacifier in his mouth.  My heart warms at the love she gives him.

I would like to thank you all again for following our story, and for the support and encouragement you have provided during these hard times.  My aunt sent me a great card the other day.  It said "After every storm there is a rainbow.  And if I have to come paint the darn thing on your ceiling I will!"  Most days lately have been stormy and everything is so much harder with our family divided as it is through this deployment.  But Lorelai and Gavin are my rainbow, and despite what challenges are  bestowed upon our family, we have each other and a massive blanket of prayers from all of you.

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