End of Sabbatical

I’d like to start by thanking all of you who have continued to care about and pray for our family during these months of online silence.  When I decided to take a social media sabbatical almost a year ago, I never could have imagined how long it would last or how many challenges our family would face during that time.  These months have been a dizzying roller coaster ride filled with both great joys and great difficulties.

First and foremost, Noah is doing AMAZINGLY well.  He is thriving and is more stable than he has been in years.  We feel like we are watching a clock turn backwards as he has regained lost skills and returned to the greater stability he had as he was younger - it’s like watching his disease REgress instead of PROgress.  There are really and truly no words to describe the joy that this is bringing to our entire family.  It is like Christmas every day.

While he is not completely without medical needs/challenges, he is almost a completely different child from a medical perspective.  It’s really mind boggling and we are overwhelmed with gratitude every day.  He’s walked an extremely difficult road to get to this point but every struggle has been so, so worth it!  One day I will share more of the details of how he’s gotten to where he is, but I feel like that is a story for another post.

Right now the how is not as important as the what - Noah is happy and thriving and stable.  The last few weeks in particular have seen him progressing in staggering leaps and bounds physically, socially, emotionally, and academically.  We are cheering him on with every step forward and asking for your prayers that the Lord would keep this momentum going!!

The rest of the family is also doing well.  Jeff’s been at his new job for almost a year and absolutely loves it.  The kids are thriving in so many ways and we’re having a wonderful homeschool year so far!

The rest of this blog post feels a bit trickier to write.  Electronic media is seldom the best way to convey nuances of meaning and emotion, and it’s important to me that my heart be heard here.  Please read with a filter of grace and with trust that my intentions are kind and loving.

We have gone through some extremely deep waters as a family in the last 10 months.   In these difficult times, we’ve been blessed to know that many of you have been praying for us without knowing any details, and if you are in that group of people, we’d ask that you continue to do exactly that - please keep praying for us.  God knows the details.

We’ve also been blessed by two other groups of people.  The first group is made up of our “in person” family and friends as well as our community.  These people have prayed with and for us and been the physical hands and feet of Christ in our lives and their support has been truly invaluable.

The last group could best be described as “friends of friends.”  These are the people who have been privy to some or all of the details because our family and friends have shared with them in person.  The distinctive here is that while we have not been in personal contact them, they are essentially one degree removed - they’ve connected with the people with whom we’ve connected and have gotten prayer requests from our friends and family.  

All three groups share one thing in common - the support they’ve given us has been old-fashioned support without the use of social media.  In this day and age, it seems to be increasingly common to air every personal issue all over the internet, but we believe that not every difficulty needs to become internet drama.  While social media can be (and has been for us) invaluable in many ways, there is also a time and a place for old fashioned communication and support.  We feel that this is one of those times.

As a result, we lovingly ask that you remain the role in which you’ve been throughout this.  If you’ve lovingly prayed and trusted God to know the details, please continue to do so.  Your prayers have surely sustained us and we are very thankful for all of you.

If we’ve been connecting over coffee, around the table, at church, on the phone, etc., please keep your communication with us to these personal, off-line situations.  I know it can be easy to chat online, but we’d ask you to refrain from doing so.  What we’ve been doing has worked incredibly well and we value our relationships with you so much - we love you!

If you’ve been praying for us as a “friend of a friend,” we again ask that you not change a thing.  If a church member, friend, co-worker, etc. has been updating prayer requests for you, please continue to get your prayer requests in that way.  We know there are a lot of you in this situation and you are such a blessing to us!

All of this is a pretty long way of saying that we have not been discussing the details of our current challenges online, and at this time we do not intend to do so. While I can understand that my silence has been very frustrating for some, please know the decision to step back for awhile was prayerfully made by Jeff and I as we considered the best interests of our family. The love poured out on our family has been very healing and we are grateful for every one of you and would love for you to continue to engage with us online going forward, respecting the fact that we will not discuss the past 11 months online until we are ready to do so.    

I will continue to update here, but because Noah is so stable right now, I don’t anticipate updating often.  You can expect to see me update once a month or so at this point so please don’t worry if you don’t see something for a couple of weeks.  If I’m on the quiet side, it’s because he’s still doing so amazingly well!!!!  

Blessings,

Kate

Sabbatical

Yesterday's Jesus Calling (a favorite devotional of mine) read:

I am with you.  I am with you.  I am with you.
Heaven's bells continually peal with that promise of My Presence.  Some people never hear those bells because their mind minds are earthbound and their hearts are closed to me.  Other hear the bells only once or twice in their lifetimes, in rare moments of seeking Me above all else.  My desire is that My "sheep" hear My voice continually, for I am the ever-present Shepherd.

Quietness is the classroom where you learn to hear My voice.  Beginners need a quiet place in order to still their minds.  As you advance in this discipline, you gradually learn to carry the stillness with you wherever you go.  When you step back into the mainstream of life, strain to hear those glorious bells:  I am with you.  I am with you.  I am with you.

Then will you call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.  Jeremiah 29:12-13

I am the good shepherd; I know my sheep and my sheep know me . . . My sheep listen to my voice; I know them, and they follow me.  I give them eternal life, and they shall never perish; no one can snatch them out of my hand.  John 10:14, 27-28

Along those same lines, the message in this short clip is one that has moved me deeply recently.  I can't urge you enough to take two minutes to listen.





Right now, I need to take a social media sabbatical.  I've been crying out to the Lord for months to take me to enlarge my faith and take me to a deeper relationship with him than I've ever known, and He is answering.  Social medial is loud and noisy and right now I need to be still and just cherish His presence.

We are all very deeply thankful to everyone who prays for Noah and our family and we understand that you appreciate regular updates, but right now please understand that even without updates, the Lord intimately knows every need and can be trusted to meet them.  Please do not stop praying, but understand that right now the right thing for me is to step away from Facebook and blogging.  I'm not planning to take down the blog or shut down Facebook, but don't expect to see posts for a while.  When the Lord releases me to return, I will, and in the meantime please do not cease to pray for Noah and for our family.  In the meantime, we will continue to pray for you and to give thanks for every prayer and kindness.

Blessings,
Kate

Keeping Calm and Carrying On

 

I'm very fond of the classic Keep Calm and Carry On graphic.  One of these days I'm going to get it as a plaque or poster for the wall - for now, the only thing of mine bearing this image is a travel sized packet of tissues imprinted with this graphic.  They are my emergency use only tissues, generally only pulled out when I'm crying in a surgery waiting room or on the way home from the doctor.

One night some of my teens were getting silly (imagine that!) and googling spin offs on the whole Keep Calm thing.  The later it got the sillier we all got, and when we saw this one, we all just lost it and couldn't stop laughing.

 

Because I'm generally known for my ability to keep extremely calm (at least on the outside) during a crisis, I joked that we needed to make a reversible sign with both images.  The thought was that we could hang it on the foot of Noah's bed so that everyone could tell the difference between an "it's OK, keep calm" situation versus a "this is pretty bad but Mom's doing well faking it" situation.  Of course, it was a (mostly) silly thought and we've never done this.

Here is what I can say right now - if I DID have that reversible sign, right now it would read Keep Calm.   Yes, the situation with Noah's line is a truly massive, irreversible step in the wrong direction, but at this moment in time it changes nothing.  He cheerily informs people that he now has "two lines for work and one just for decoration" LOL. His days look no different than they did last week, or the week before that.

What we have done in choosing to "ride the lamb" is to keep this line and in doing so we have preserved the ability to give Noah the same nutrition, hydration, and medications we gave before - in short, to keep him comfortable.  It is a wee bit more time consuming but totally do-able.  

What we have lost is the ability to provide aggressive treatment for infections - it's no longer feasible to add IV antibiotics, IV antifungals, IV steroids, IV ibuprofen, etc. to his other meds without an additional lumen.  The only way to get that additional lumen would be to have surgery to replace the line, and in doing so we could lose access completely and not even be able to easily keep him comfortable.  If line placement failed, or if it succeeded but we eventually lost that line, his life would be numbered in days.

I guess you could say right now we are buying time.  We are choosing quality of life above all else.  We are re-doing a number of protocols to place line preservation above everything else, because the line keeps Noah fed and hydrated and comfortable.  I don't know when the next illness will strike.  I don't know if it will be viral or bacterial, and I sure don't know what we'll do if it is bacterial.  In reality, I don't need to know.  

What I do know is the goodness of God, and what I do know is TODAY is that Noah is content and secure and loved.  We spent time today making a bunch of autumn decorations for the little seasonal tree in his room, and we also spent a good bit of time discussing the fact that it wasn't a competition and it didn't actually matter if his paper chain was longer than Mary Faith's or if she completed her turkey craft faster than he did LOL.  He ran out of his beloved popsicles and I ran all my errands and didn't remember the popsicles until I was back in the driveway - so of course, I turned around and went back to the store for them.  He showed his nurse his photo album he's making of Jake pictures, we did a bit of math and phonics, and we talked (AGAIN) about how it's not polite to interrupt.  He made me smile and he made me laugh and he drove me nuts just a wee little bit. It was a perfectly normal and therefore utterly perfect day.  It was so full of fun and teaching and squabbling and correcting and napping and playing that there just wasn't room for panic or freaking out.

I don't mean to minimize the mind boggling gravity of his current situation or how difficult it is.  Noah can turn on a dime and I could well be posting of some emergency before the night is out . . . but until then, let me reassure you that his ordinary days are just as ordinary and therefore extraordinary as ever.   Heartache is coming but it's not here now, so for now we just embrace living.

Blessings,

Kate

The lamb

After multiple failed attempts to got any bit of TPA into the line, surgery sent Noah for a line study using contrast put into another lumen.  The line is not displaced, linked, etc. - it's just that the one lumen is hopelessly blocked.  We were at the hospital all day and didn't get home until 7.  I would have updated sooner but have been fielding a number of phone calls.

Dr. B is meeting with the palliative care team next week and we'll be meeting with him and hospice shortly thereafter.  In the interim, we can limp along  with just 2 lumens as long as Noah does not require antibiotics and all of the other drugs that go along with an acute illness.  We are simply not prepared to replace this line if we can manage with it.  We will be changing a number of Noah's protocols and handling a number of things differently all with a view toward keeping this line.  At this point, there is simply nothing more important. 

I ran into our cardiologist, Dr. R., as we were wrapping up at the hospital.  He's a wise and godly man who is one of our absolute favorite doctors.  I brought him up to speed and he said that sometimes we need to choose whether to ride the wolf or ride the lamb - both have potential for good or negative outcomes and the decision can come down to how aggressive one chooses to be.  In this case we are riding the lamb for now and accepting the risks inherent in that choice rather than risking aggressive options that could end Noah's life very quickly.

To say we covet your prayers would be the understatement of the century.

Kate

Prayers NEEDED!

Yesterday one of the lumens of Noah's central line stopped working.  We came to heme/onc so they could put TPA, a clot buster, into the line.  It is so blocked that they can't get any of the TPA in at all. 

Surgery is sending him to radiology and they are going to attempt a dye study.  There is not a great deal of optimism regarding the line at this point.  Please pray.

Kate

Hopes and Dreams

Forgive my lack of updates.  We've been busy making some lovely memories (and I WILL share some pictures ASAP) but I've also struggled with finding words to say.  In some ways nothing has changed and in other ways it seems like everything has changed.  Noah is still as stable as he really ever can be.  He just finished antibiotics for a pretty resistant and nasty bladder infection which produced high fevers and really knocked him down for a little while.  We give thanks to the Lord that the antibiotics did in fact do the trick and the infection was cleared.

We saw cardiology a week and a half or so ago.  Noah was due for a routine visit but even if he hadn't had a standing appointment, we'd have scheduled one because he's been having some pretty persistent elevated heart rates.  It seems that doctors don't give what we'd term "good" news much anymore - it's down to "bad news" or "really bad news" or "devastatingly bad news."  Perspective is an amazing thing and when the cardiologist said that Noah could be in heart failure, we were greatly relieved to learn that the elevated heart rates were "just" a sign that his body is working very hard just to do the work of living.  The work of breathing in particular is making his heart work harder and beat faster, and while that isn't particularly good news per se, we were glad that his heart is doing what it is meant to do.  It is certainly better than heart failure!!!

We've also seen hematology recently.  Noah's blood is still not clotting properly but the good news is that he hasn't had any significant bleeds in several weeks.  He did get a transfusion when we were there but his numbers have looked good since then.

Noah does appear to have a local infection around his central line.  In our experience, it really doesn't look that  bad - he's certainly had sites look far worse - but everyone is showing a lot more concern simply because we cannot afford to lose this line.  Several months ago we'd just have taken a wait and see approach, but the very day this started looking a little bad, our hospice nurse called Dr. B who immediately ordered some pretty big-gun I.V. antibiotics.  We'll just need to wait and see what happens there.

In other big news, Jeff has a job interview on Thursday.  He's been working close to full time as an industrial trainer for the continuing ed. department of our local state technical college.  He's not teaching college classes - he's out in the community at various industries teaching all sorts of things from statistical process control to safety to interpersonal relationship skills to computer classes and so forth.  It's an hourly job which means he doesn't get paid if he doesn't work, and he has no benefits.  We are immensely thankful for the hours he has but have also been praying for an actual full-time salaried position.  An ideal position has opened up at the college and he and two other candidates have interviews Thursday.  They will announce their selection on Friday.  This would be wonderful as it would be a lot of what he's already doing but as a salaried employee.  Please keep him in your prayers!!!!  It would be such a blessing to have a stable weekly income to budget and the benefits would also be a blessing.  Jeff loves his work and he has the best co-workers around.  We'd both hate it if he had to look elsewhere for a salaried job.

Hannah Grace is now working at our brand-new Publix just a mile from our house.  She's considered part-time but they are talking about moving her to full-time before too long.  Even at part-time she's getting almost 40 hours a week.  She loves her job - it seems to be an incredibly positive work environment - and we love having such a lovely store just around the corner!  Her store and district managers have had some very, very positive things to say about her and we are very proud of her.  Please pray she continues to find favor and that she can eventually move to greater and greater positions within the company.

One more BIG  prayer request, and I'll apologize in advance for being a bit vague.  Jeff and the children and I have had a big dream for many, many years.  It has always seemed just out of reach but recently things have transpired which make it look just almost possible.  God will need to work in some extremely specific and incredible ways to make this happen, but we know nothing is too big for Him.  I can say that if it works out, we'll have a truly amazing God story to tell.  This is something we've longed for in the deepest way and I'd just ask you all to pray that the Lord would bless and pull this all together for us.  There are definitely some mountains He'll need to move and we are prepared to give Him all of the glory.  In particular, I've felt led to pray that the Lord would protect this dream/opportunity and preserve it until He is ready to swoop in and make it happen.  It would mean a great deal to us if you'd join is in praying fervently for this!!

I'll get some great pictures up soon and I hope to have great news of Jeff's new job on Friday.

Blessings,
Kate

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