Beyond compare

 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.  Romans 8:18

It's me, Kate.  I'm beyond thankful for my precious friend Michelle who has blogged for me for two weeks when I could not find the time, strength, or heart to do so.  I still don't have the heart to do so, but I couldn't ask anyone else to write this post for me.

As most of you know, Noah became very, very seriously ill with a urosepsis (sepsis caused by a urinary tract/bladder infection) two weeks ago today while our family was away in North Carolina.  Two weeks ago right now, I truly didn't know if Noah would live to see morning.

He did live, and he made it back home to our "regular" hospital here in Greenville SC several days ago.  When we made the decision to transfer back here, he seemed to really be on the mend, but all of that changed almost as soon as we arrived.  For the last 6 days we've battled dangerously low blood pressures and low blood sugars which are both doing better.  We've also battled increased weakness, vomiting, GI bleeding, and pain - all of which are doing worse.  

 The bottom line is that Noah does not appear to be coming all the way back from this infection, and that the currently worsening symptoms are a result of disease progression.  The only way to keep the vomiting at bay is to heavily medicate Noah to the point that he is sleeping a great deal of the time.  It was confirmed this afternoon that Noah is vomiting blood/blood clots as well as bile and stomach acid.  We'd suspected that Noah was draining blood/blood clots into his stomach drain since he got sick, but didn't actually test for blood until today. 


Today we were told that the best thing we could do would be to take Noah home to hospice and keep him as comfortable as we can.  At this point it simply isn't fair to him to put him through a barrage of painful tests and interventions when there really isn't anything that can be "fixed."  We will manage his symptoms with increasingly powerful pain medications and round-the-clock scheduled doses of two IV meds to keep nausea at bay as much as possible. 

We are now pursuing getting in-home private duty nursing for nights.  Noah's qualified for nursing for a long time, but Jeff and I were in full agreement that we would provide for his care as long as it was safe and reasonable to do so . . . we are now in agreement that his greatly increased IV medicine schedule and the need to watch him for vomiting/choking and pain through the nights means that a night nurse would be very appropriate.  I'm not sure how quickly this can be arranged - please be greatly in prayer that we can find the right night nurse very quickly. 

We will probably move his hospital bed out to the playroom which is fairly central to the rest of the house.  Noah has made no attempt to leave his bed and hasn't even asked to go throw pennies in the hospital fountain - he can be alert and playful, but only for very short bursts, so I think that he will be happy and relieved to have his bed in the center of the action of our home.  This does put him a little farther away from our room at nights so we'll use a video baby monitor until we get a nurse.  Once we do get a night nurse, having him in the playroom will be far more appropriate than having a nurse sitting in the boys room with all of the other boys all night!

Noah is not actively dying by any means right now.  His vitals are all good and strong.  He is, however, a far sicker boy than he was just 15 days ago.  I would love to think and hope that he will do what he does best - that he will surprise us by starting to do better instead of continuing to do worse . . . . and that brings me to the truth of the hope that we have in Christ.

Noah is suffering.  There is no other way to put it.  We hope that we will be able to medically alleviate some of that suffering when we get home, and we're hoping and praying that the Lord will touch him here on this earth and bring him back to where he was before he got so ill, BUT we KNOW that we have a very certain hope that his suffering will be relieved in heaven if not here on earth.  A friend recently reminded me of the verse that I shared at the top of this post - that the suffering that Noah (and all who love him) is experiencing does not even compare with the glory that will be revealed in heaven.  It doesn't even compare - how beautiful is that?  This is no "wish upon a star" sort of hope - it is as real and solid and certain as the knowledge that the earth is round and the sky is blue.

Tomorrow we plan to bring our boy home.  A lot of people are working hard to make that happen - the doctors and staff here, our infusion company, our hospice team, and Dr. B.  When we are totally ready to walk out the door, we'll put him in his wheelchair, switch him to a bag of home TPN (being delivered here to his room by our infusion company), dose him with every pain and nausea med available, and head home.  I don't know what we will see after that.  Being home can be very, very powerful medicine for Noah, and part of me is hoping so much that we'll see him start to turn around.  If not, he will still be in the best place in the world - at home, surrounded by people who love him and care for him and who will move heaven and earth to help him be as comfortable and as happy as he can be for as long as possible.   We will have hard decisions to make in the days to come and we covet your continued prayers so much for those decisions and for comfort for Noah. 

My mommy heart is breaking for Noah and for all of us, and I hope so much that there will be no more trauma or separations during the holidays.  I had looked so forward to spending a quiet week relaxing and decompressing with my family in NC, but that was not meant to be.  I've been away from them all since that ambulance ride ripped us apart two weeks ago, and I long so much for a peaceful, precious, memory-filled, joyful, cozy, and worry-free holiday season.  I just want to be together and able to enjoy being together.


We will continue to update here and on Facebook.  Sometimes it is easier and faster to send a quick, up-to-the-minute update on FB as opposed to here, so if you are on FB I'll be happy to friend you (www.facebook.com/kate.estes), but I will be sure to put more detailed updates here as often as is feasible. 

With hope,
Kate