Preparing for Channing's Big Day

Vanessa finally got some rest last night as my air headed stunt double did not bother her in the middle of the night.  I got some much-needed rest too!

Morning OB rounds came early for Vanessa, the meeting was full of post-partum information before departing home.  However, we both ask the question, "where is home?" we are currently residing in two places now.  Our house has a welcoming atmosphere that our parents continuously create.  Our second, Channing’s Presidential suite in the NICU, a room with some space for a bassinet, monitors, a vent for breathing assistance, and a couch for us new parents to eventually sleep on to be by his side.

 During Vanessa’s stay I saw a painting of the Mackinac Bridge hanging outside her room, for you East Coasters, check out the Mighty Mac bridge.  This struck me emotionally since we got engaged at the beginning of a bridge over the Huron River at Gallup Park in Ann Arbor. As I stuttered over my words asking here to marry me, I referred to this bridge as "The Bridge of a Lifetime."  As we continue to cross this "bridge of a life time," it is these little signs of positivity that pop up and carry me (us) through this painful and emotional struggle.

Channing’s kidneys continue to grow at a rapid rate and his abdomen has become very distended and rigid.  It is amazing what two or even one day can make with this disease.  However, even though his kidneys continue to grow, a little bit of urine has drained from his Foley catheter that is placed in his bladder.  This is a positive sign, however it may or may not be enough to save a kidney.  Their function is being overcome by the cysts that continue to grow in size.  This morning Vanessa, family and I were able to witness rounds for Channing.  This is where a huddle of doctors gather in his room and discuss his previous 12-24 hours and plan for his care for the following day, quite interesting if you ask us.  We listen with intent and collect our own thoughts about what we heard during the rounding, doctors ask questions and exit his room.  Vanessa and I look at each other in despair and console each other as our parents huddle around us.  To keep somewhat of a normal behavior, we all talk to the little man as if he weren’t in this predicament and we touch and hold him as much as we can, breathing tube an all.  We even have the PATRIOTS game on the TV as if we were home cheering them on.

Tonight, we were hit with a huge reality check, a plan for Channing to hit the operating room--tomorrow.  Pediatric surgery will be performing the task of removing his kidney(s), placing a tunneled central line (Broviac), as well as a peritoneal dialysis catheter; it will be a BIG day filled with emotions.  Going back to August when we were informed of this diagnosis (ARPKD), we knew this would occur and we were prepared for this journey.  However, when we hear it from medical professionals that it will occur tomorrow, it is heart wrenching.

  

Last week in the front of our house on the sidewalk was another random sign of HOPE

Keep the thoughts and prayers coming!!!