Thursday, November 26, 2015

Thanksgiving: Slow and Steady Wins the Race

A lot has happened in the last 3 weeks.  Julie was up and out of bed walking the day of that last post Wednesday, Nov. 4.  With one short walk that day, the next day she went for two.  When asked which way she wanted to go back to the room, she asked "Which way is longer?"  Be it 30-40', she was already pushing herself.  The docs were very encouraged at her progress, and pushed to move her out of ICU that Friday, Nov. 6.  If you thought I was a bit cuckoo for coco puffs when reading the last post, part of me would have agreed with you.  But that is what faith is sometimes, absolute crazy talk.  When we spoke with Dr. Boltax her ICU doc before they moved her, I thanked him for supporting us in the decision not to intubate.  "Yeah, that turned out to be a good call didn't it?"  he said.  Frankly, I think it saved her life.  His ability to look at the whole situation, weigh the risks on both fronts and support me not to intubate was a fruit of wisdom only experience can bring.  Had she not improved, I still think it was the right call for the time.  Julie doesn't remember much from that first week in the hospital, and she was in delirium from the high CO2 level in her blood.  When I told her what they wanted to do that Sunday, she later told the fellow "Give me one more night" to fight and show him she could do this without needing intubation.  Even in that state, she knew she didn't want to be intubated.  She told me later, she had the thought 'I can stay off the vent and live, or get intubated, and die.'  The vent obviously saves lives, and had she been on it, could have saved hers, but it is tough to come off for someone with so little lung function.  It could have meant having a tracheostomy were she able to come off.

We spent nearly the next week on the floor finishing out her antibiotic regimen.  Towards the end of the regimen, her white counts (WBC) started to fall again.  We were nervous she was going to catch something, especially in the hospital.  She had to finish the antibiotic because it was working so well to help her fight the infection.  The Transplant doctors decided to discontinue the antibiotics one day early since Ceftazidime lowers WBC.  They also dropped several other transplant and anti viral medicines that lower the WBC.  Low white counts or Neutropenia is when your disease fighting white blood cells (Neutrophils) fall below 1000.  Normal is 4000-10000.  Below 1000, you can virtually catch everything.  Julie had us all gowning up.  At the lowest point just days after they discontinued the meds mentioned above, Julies neutrophil count was 200.  Those days I didn't sleep over.  In fact during the 3 weeks she was in the hospital, I spent probably 15 of the 20 days overnight there.  We got into a rhythm.  I'd leave everyday to go receive the boys when they came home from school and relieve our nanny.  We'd do homework, have dinner together, some sort of play time, and then we would read and go to bed.  Someone would come to my home around 9:00 and I'd head back up.  Often it was my mother or her father coming over.  We are so fortunate to have so many willing to help.  The burden has naturally fallen on our parents for the most part, but we have plenty of friends who are willing when that doesn't work out.

Julie took 3 days of Neupogen; a shot that spurs the marrow once the body starts producing white blood cells.  She was still neutropenic.  They decided to give her two more days of doses.  Finally about a day after she took the 5th shot, her neutrophil count shot up; first to 2000, and then to 3200.  As soon as she was over 4000 they discharged her.  This week she was at 7000.  She came home last Wednesday November 18.  It had been 3 full weeks in the hospital.  I have never seen her in the hospital that long except maybe once when she was in for CF years ago.  I have never seen her fight to stay alive like she did in the ICU and thereafter.  She did everything she could each day, to get better.  She is extremely sore in her muscles and bones.  They suspect it is the inflammatory response of the immune system to the systemic infection she had a few weeks ago.  She worries it is something worse, but for now it is the best explanation.  Despite her being in so much pain, she would get up everyday and walk.  Sometimes it was a shuffle, and sometimes more of a walk.  Incrementally, she is better everyday.  If she looks at it day by day it is hard to notice.  Looking back a week at a time however it is pretty clear.  She still gets up and out of bed, asks to go on walks, eats when she is not hungry and/or nauseous,  does her breathing treatments regularly, and wears Optiflow nasal cannula whenever she does her treatments or is hanging out in bed.  She does this all while not noticing the improvements.  She is spent mentally and physically.  She lost 10 lbs with this infection and at best has gained 5 of that back.  However, that is just in a few weeks.  Before these infections she has had a difficult time gaining any weight.

Our hope is that we can navigate this uncharted water of staying off the drugs that suppress the white blood cells without having previous infections come back.  I know this seems like a simplistic solution, but these very drugs have saved her from some pretty lethal viruses she has picked up while being suppressed, i.e. CMV, C-diff etc.  It is a dicotomy of treatment.  She picks something up, needs a medicine to kill it since her white blood cells are recovering from chemo suppression, and that medicine supresses the white blood cells even further.  It is a balance between two evils.  Some of her anti-rejection meds have been discontinued as well for the same reason.  We are tying to allow her to fully recover all the while putting her lung graft at some risk.  She still takes the main anti-rejection medicine Prograf.  

This Thanksgiving holiday will be one to remember.  It was my year for us to spend it with my side, though Julie stayed home and I brought her a plate.  She is so gun shy to be in close quarters with a lot of people right now.  Her sweet mother came over with a plate and spent the last 4-5 hours with her.  I think they both needed it.  Two nights ago Julie was broken-hearted she couldn't spend Thanksgiving with our families.  It is really tough for her right now to mentally want to be involved with simple activities but not be able to physically participate.  Just to get out of the house for a few hours is a feat for her.  She worries about her future, and is always thinking about and researching her current condition and what she is feeling.  However, she is much better this week vs. last week.  I could say the same for the previous weeks.  I have always had a peace that she would pull through these struggles and the greater struggle of 2015; this last scare didn't change that.  However, there was great reason to doubt, that first Sunday of November.  All signs pointed to a funeral that week.  I can't explain what I was going through.  It was a time of soberness, and hope, along with the grim realization of what was in front of me.  My wife was fighting for her life.  Sometimes having a positive outlook when speaking to others around you can have unintended consequences.  People don't always realize the gravity of the situation since it is downplayed with optimism.  To that point, it is hard for others to realize how lucky we really are to have Julie around; to have her improving, be it slowly, and to be able to enjoy her company.  Her comments during that dark week were like the dews of heaven.  Everything she said was concise, but powerful.  Ironically, it wasn't an emotional week per se, but it was a somber time for sure.  The scale could have tipped either way and the two of us knew that.  I don't really know the reason for her positive outcome, nor do I need to;  but we both noticed the prayers and fasting of others carrying us.  They didn't take the horrible situation away, they made it bearable.  They made it possible, not inevitable, for her to pull through.  Had things gone the other direction, I have to think that being able to function normally no matter what the outcome might have been, was a huge blessing for me.  I have no better explanation for this than the power of prayer and fasting of others.  I truly don't believe I could have done without them.  How else would a loving God want us to feel in times of strife?  If my child is suffering, I do everything I can to comfort him.  Can God take the pain away?  For Julie, yes.  It is on the other side.  Can He take it away from me. Yes, by making it bearable; by making it part of the routine so I could still work to provide, be a student, and tuck my kids in bed at night.  Did He take pain away from Julie?  Slowly.  Why not faster?  Why not sooner?  Why does she have to keep suffering?  When is she going to get better?  These are all questions that have been asked by others to me and questions that creep into our minds from time to time.  I don't know.  But I know how much He loves her.  I know how much He loves all of us.  Just by the small incremental improvements that cause us to hope I can see His love for Julie.  Just by how we were carried through that grim week in spite of the outcome, I know He loves us.  Just by slow and steady hints that she will win this race, I can tell He loves her.  And just by her quiet fortitude amidst turmoil of body and mind, I can tell He loves her.  I love her.  And I have grown to love her by being by her side.  I never would get these moments where I can get a glimpse of what God feels for my wife without this experience.  It has never been easy, but so what?  Nothing in life is easy.  If something were, it sucks.  Usually something that is easy is a waste of your time.  Only the best things in life are hard.  Easy is fleeting.  Hard is foundational.  I think about what my life is like and it pails in comparison to the struggles of those who came before us.  Thinking of what life was like when this country was born has far greater weight to it than the struggles of our family's life.  What we are going through, all who read this will experience.  We will all go through some sort of struggle for our own lives or for the lives of our loved ones.  My hope is that seeing the strength of this one woman in a world of 7 billion people, others will look within themselves to face what might seem impossible;  that they can doubt their doubts and not their faith, and pull through the worst of times to enjoy the best of times.  Thanks be to God for the experience to be here and come to know Him through our struggles.  Happy Thanksgiving.

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