Better and Better...

"we'll sing all the songs from way back when
And we'll walk down the avenue again
and the healing has begun"

On September 25th an evil wind blew in and out of our lives that changed our family forever. "What is happening right now is life-threatening." Those were the words of the PICU doctor, who in a moment of stress and panic was fulfilling his obligation to keep us posted on the situation. Jacob needed to transition from the standard ventilator to the oscillator in order to properly feed breaths into his lungs. It wasn't going well, and for the first time since Jacob came into our lives we were confronted with the darkest of variables.

There is something that happens to you when you have to tell your child that it's OK to go. You suspend every selfish instinct, every tendency to ask something of him... Where all the medical details require presence of mind, this moment called upon a presence of soul...you peel away the layers of knowledge, beliefs and programming and you get to the core of your selves. Conversations with God talks about how the source of all of our actions can be reduced to either Love or Fear. But it's this particular moment that requires going even deeper, and tapping into the Everything, into the source of the "why are we here". Somehow you put all emotion aside, because more than any other moment in your life, THIS moment requires you to be a good parent. You need to make sure that he knows that if he needs to take this journey, that he should do it without fear. If he sees Amelia, Elaine or Corduroy, it's OK to go to them. It's an experience that you're never proud to have shared, but one that gives you indescribable strength when you come back from it together. All of this transpires in a quick moment, one that is so overwhelming and so chaotic that you barely recognize when things start to take a turn for the better...

Amidst the madness, the shuffling of 20+ people in our small hospital room and the apparent crowd of both PICU families and staff that were gathering outside the room to observe this tornado, in flew Ron from Respiratory with the tanks of Nitric Oxide that saved our son's life. This was a crazy time...a sad time...but this wasn't Jacob's time...and so began a journey that finds us in a much better, much happier place almost a month later...

Jacob was extubated last Tuesday (i.e. they took the breathing tube out). He's awake and aware. There have been smiles and belly laughs...reacquainting himself with his old pals Monkey, Puff and Elmo. He's recovering well, as are Mom and Dad (though sleep is still quite scarce given our schedule at his bedside). He is breathing mostly on his own, with some minor support from a nasal cannula and a level of oxygen that's just above room air. His respiratory rate is around 40 breaths per minute, which is one third of what it was when he was intubated three weeks ago. They removed his chest tubes on Thursday and Friday, as well as his foley catheter (no more pee bag!). Round one of chemotherapy was successful in getting us closer to containing his disease. Jacob's spleen size was described as "normal" today, and his liver has come down in size even since they first detected its shrinkage. We have a ways to go, but the Encology folks couldn't be happier with Jacob's progress in such a short time. A bunch of things need to go right, but they say we may be able to enjoy a handful of days at home before round two of chemo, which starts on November 5th.

Last week's surgery was postponed because Jacob's platelets were too low for the procedure to safely proceed. This turned out to be a
blessing, as the surgery (currently scheduled for Thursday AM) will now be a 3-in-1 procedure. In addition to the Broviac he will now also be getting a gastrostomy tube installed. This will ensure that Jacob receives maximum nutrition during the chemotherapy, which is a huge part of the recovery process. The G tube will be temporary, but it will give his body a great chance to catch up develomentally to where he should be at 22 months. They will also remove a femoral central line that was placed in his groin while he was unconscious. That will be the last of the tubes/lines/foreign objects that need to come out to restore him back to where he was when he arrived. At one point he resembled a major city highway interchange with the amount of lines going in and coming out of him. Now he's a small hugable package of Love that we can finally hold in our arms again. Ahhhhhhhhhhh...

What a blur this has all been. With the journey far from over we find ourselves at a comfortable plateau where we feel strong and ready to continue our fight onward. Each day has been a positive step forward, and each day has depended on the last for us to determine the course ahead. We feel like we've been through a med school crash course. With Jacob reaching his respiratory goals we move on to conquer his disease, and after that get back to the good ole "Terrible Twos". We're proceeding with the same cautious level of optimism that got us here, bolstered and fueled by the overwhelming power of all your thoughts and prayers. Our appreciation is beyond words. And in the absence of words there will always be a song to help get you through it all...


"Before you go to sleep, say a little prayer...
Every day, in every way, it's getting better and better.
Beautiful beautiful beautiful...
beautiful boy..."