Where feet may fail

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

(Oceans, Hillsong United)

I couldn't bring myself to sit down and update yesterday and told a friend just this morning that I didn't know how long it would be before I could do it.  It occurred to me just now that this won't get any easier no matter how long I wait and that my delaying would be an unkindness to all of you who prayed about yesterday's appointment.  I will try to be as clear as I can.

Noah depends on a central line to keep him alive.  He has no enteral access, meaning he cannot get medicine or nutrition or anything else through his G.I. tract so everything he gets is given in I.V. form.  This requires the use of a very large 3-forked line that must go through one of the body's major (central) veins.  If his heart were the trunk of a tree, these central vessels would be the biggest branches.

He has had many of these lines placed over the last 7 years and inevitably there has been scarring, clotting, and damage to these central vessels.  Vascular studies done before the most recent line placement seemed to indicate that Noah was almost out of central access points, so we were referred to a vascular surgeon.  Dr. C met with us and ordered hours of additional vascular studies after Noah's line surgery.  The main reason for the referral was to see if Dr. C could do what's known as an A.V. fistula.  This is a surgical procedure where an artery and a vein are attached.  The opposing blood flow causes a large area to develop over time - a sort of bull's eye that provides central access for any needle or access point placed in the target area.  This is usually done for dialysis patients but Dr. C has an amazing reputation for placing these in children to provide central access.  This would be a permanent form of central access if successful.

The greatest obstacle is that while these are usually done in the forearm, the consensus before these additional studies was that Noah would not have enough velocity in the vessels of his arms. Even though the large vessels in Noah's upper body are damaged/occluded, our bodies were beautifully designed to created corollary or bypass vessels to go around clots and blockages.  These vessels keep blood flowing to his extremities but not with the same velocity as the original vessels.  (Think of a detour off an 8 lane interstate onto a dirt road.  It will get you to your destination but not with the same efficiency.)

Our hope was that Dr. C's additional studies would have either shown that upper body central access is still a possibility or that a forearm fistula was a possibility.  Failing those, there was the possibility that a fistula could be done in his left leg - a far more complicated and risky surgery, but it would have still provided permanent central access for Noah.

It's been a very difficult couple of weeks for Jeff and I waiting for this appointment.  While Dr. C's preliminary outlook was fairly grim when we first met with him in the hospital, we truly believed that there was a great possibility of better news once he'd had a chance to review these additional studies.  This is why I was so very vague - I didn't want to hurt or distress people with that initially difficult prognosis when it might have proven unfounded.

As it turns out, there were no joyful surprises yesterday.  Dr. C said that there is absolutely nothing that he can do for Noah.  The vessels in his upper body are damaged beyond use and the vessels in his leg are far, far too small for a fistula.

The bottom line is that right now Noah has a line in his right femoral vein.  Femoral lines are not considered very long-term lines at all.  When this line needs to be replaced, a line will be attempted in his left femoral vein.  When that line stops functioning, the only thing we will be able to do is keep Noah as comfortable as possible.

This means that for the first time ever, there is a completely unavoidable limiting factor to Noah's lifespan.  Even if we could somehow prevent every infection or virus or bleed, if we could get his liver and his bone marrow and his heart and everything else working just beautifully and keep him in the best health of his life, the loss of central access will eventually mean the loss of our ability to provide him what he needs to live.  On the other hand, the Lord may walk Noah home via a different road entirely and infection or organ failure could keep central access from ever becoming the greatest issue.

No one has any way of knowing how long this line and the next line will last.  Every doctor has expressed concern over the short-term nature of femoral lines but Jeff and I have no real perspective of what that means so I asked Dr. C point blank what (lacking a crystal ball) would be a best-case scenario for this kind of line to last.  He looked away and said, "Maybe months?"

There are two great blessings in all of this.  The first is that Jeff and I do not need to make a decision regarding a leg fistula.  If this had been a possibility, we would have needed to do it very quickly because the fistula would have been unusable for 2 months after surgery.  It would have been very big, very painful, very aggressive surgery with the potential for huge complications including heart failure.  Jeff and I were aching and dreading that decision with all of our hearts and God graciously took that decision and all of the room for regret away from us.  We will not ever have to wonder if things would have gone better had we chosen differently and we are deeply aware that this is a mercy and a blessing.

The second is that, as it says in the song I quoted above, God's grace abounds in deepest waters.  It's been easy to feel like we are drowning recently but the truth is that God's grace will allow us to walk on these waters rather than sinking if we keep our eyes on Him.  These are very certainly deep waters and the feet of our flesh would absolutely fail if we were left to ourselves.  We feel helpless but only because we've been granted a clearer vision of the helplessness faced by ever person on this planet.  Any illusion of control has been stripped away and we are in a position to reiterate our utter dependence on the hand of a good God.  He has never, ever, ever failed and He surely won't start now.

Specific prayer requests:

1. For continued grace and wisdom for Jeff and I and Noah's medical team.  We'll be meeting with hospice and Dr. B soon to discuss Noah's care plan in light of this new information.  We want to make decisions about Noah's care with the greatest wisdom and we need to find find our way all over again in balance quality of life and quantity of life issues.

2. For continued joy and innocence for Noah and for his younger siblings.  While the oldest few understand some of the gravity of this situation, the younger ones are simply happy that Noah doesn't need more surgery.  They need to enjoy this time without the burden of knowledge that is too heavy for them.  Our ability to protect them will end all too soon and we believe that right now the greatest gift we can give them is joy-filled memories.

3.  For nursing!!!!!  We are completely without private duty nursing right now - the Super-Nurse we came to love so quickly has out of necessity accepted a different job with better benefits.  This is not a matter of our being unwilling to do the work of caring for Noah but a matter of our desiring the assistance of someone with more training and experience as we do our best to keep Noah's line working beautifully as long as possible.

4. For comfort for our hearts and for us to keep our eyes fixed on the Lord.  I won't sugar-coat things.  This hurts more than I ever imagined anything could hurt.  It's hard to eat or sleep or think clearly.  Doing the mundane tasks of ordinary life feels surreal. It would be all too easy to sink into fear or bitterness or despair.  While the greatest faith on earth won't take away the pain and other human emotions, our great desire is that God would be glorified through all of this.

Blessings,

Kate