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.

Wednesday, November 4, 2015

Moving Along...

Julies vitals seemed to stabilize on Friday after the first night of treatments.  Her blood pressure was normal, oxygen was where it needed to be, and she was doing well on the BiPAP.  She was able to communicate, but slowly.  Her CO2 levels were as high as 53 on Thursday night but had dropped to 47 Friday morning.  This explained her slow communication.  Her mind was quick but her motor skills were not.

Her nurse came in Saturday morning pushing for a PICC line.  She told me not to be alarmed when the PICC team came in.  It was a bit of a passive aggressive approach, but I was game for the conversation.  I replied that they could come, but Julie would probably refuse it.  Surprised, she asked why, and I explained Julie received these as a kid and had a lot of scarring in her veins.  When she was 25 they surgically implanted a permanent port for access so PICC lines wouldn't need to be done any longer and since it was so difficult to place them in her scarred veins.  I proceeded to question the reasoning for a line and she explained to me a logistical problem of having to switch incompatible meds from port to peripheral iv lines.  She was getting uncomfortable with my questioning and started talking about possible additional drugs hoping I would concede.  I was fairly confident there weren't any new drugs, but listened to her reasoning.  She followed up with "I'm just trying to do what is best for my patient."  Power play.  Interestingly enough, during chemo, this was worked around several times, and was never raised as an issue but as a process.  There were far more incompatibility issues at Huntsman Cancer and they made it work.  While she had a point that it would make her job easier, and drawing blood more convenient (peripheral lines usually last a few days), it didn't justify the procedure.  I told her if she could get the transplant team and Dr. Cahill to sign off then we would consider it.  After talking to a few on the ICU team it was clear it was being pushed by this nurse and they were accommodating the request.  It was a reasonable request, but it wasn't absolutely necessary.  No added meds were being considered and much of the justification for the procedure was hypothetical.  In fact, the drug that was dangerous to deliver in a peripheral line and incompatible was on the docket to be discontinued.  I think this nurse had good intentions, but they were driven by her motives to have a smooth day.  I finished the conversation with her around benefit risk and made my point that if it wasn't absolutely necessary, we wouldn't be doing it.  This story may come across as high drama.  It wasn't, but it was a bit of a back and forth with the team.  I asked if the Vancomycin were discontinued following a negative Staff culture, would we still be having this conversation.  The drug was discontinued a day later.  Whenever there is a procedure suggested, my goal is that it can be justified/explained for the benefit of the patient first and the practitioner second.  If it can, we will jump on it, if not, we won't.

Julie seemed to decline into Saturday as she had a harder time communicating.  She was lathargic and sleepy.  She spent much of the day off BiPAP and she could have been retaining more CO2.  Her close friend Heidi was kind enough to come spend the afternoon and evening with her while I took my boys to the UofU football game.  I had two friends reach out with tickets and this was just what I needed to decompress.  We tailgated and did some trick-or-treating so I didn't feel completely guilty taking my boys to a game on Halloween.  We bought some toys and sweatshirts at the mobile bookstore, Jack had his own Sprite with a hot dog and Ben had his own Powerade with a Hamburger.  They were pretty stoked.  We had Charles with us and that was an adventure.  On one break in the hall he booked it to the bathroom because he had never seen that many sinks and toilets in his life.  It's always so funny to see a baby/toddler get excited about something new.  We finished the night with a bike taxi.  The boys were holding their own on the walk back to the car, but this just called our names.  They thought it was pretty fun.  After spending Friday night at a friends for a sleepover and an eventful Saturday together, Ben said, "This was the best day."  As with most nights, my mom met me at my home after I read to, and put my kids to sleep.  I headed back to the ICU to sleep in the room.

Most nights Julie just wants me at the hospital, it's because she is scared.  I thought I was going to sleep at home that night and found myself pacing thinking about a cough attack, inability to find her cannula, going to the bathroom, or alarms on the medical devices.  It usually takes longer than you would like to have someone come in.  Some nurses are the exception, but even they get busy with other patients.  Julie had Heidi text me around 10 to let me know she was scared to go it alone.  I was honestly a little relieved I had to go up there.

Sunday morning, I woke up and came home to take the boys to church.  I was there just over an hour when the Pulmonary Fellow called me.  He was new to the case and he was trying to rule out all possibilities of infection.  He wanted to do a CT scan of her Spleen to look at the benign abscess she had a few months prior.  However her dependence BiPAP made him nervous to take her out of the ICU.  He was suggesting intubation, a breathing machine with a tube down her throat.  He was concerned she would crash outside the ICU and they would have to do an emergent intubation.  Again I pushed back to understand the rationalization.  My biggest concern was once she was intubated, it was a whole new territory.  It is tough to come off the ventilator with healthy lungs, and with compromised lungs its even more difficult.  I wanted to know the plan or goals to get her off the vent if we had to go that route.  To that point he said he also didn't want to wait too long till she had no lung reserve.  I left church and came right up.  After deliberating with the team the attending ICU doc John Boltax mentioned the same reservations I did.  He also mentioned the possibility of needing a tracheostomy to come off, or never coming off at all.  The fellow pushed again and John insisted we make sure this was the right course of action now.  He looked at me during rounds and asked me if Julie and I had talked about this type of situation and what she would want to do.  I replied to the team "She certainly has a will to live and get better.  Anytime a procedure is suggested like the PICC line or this, she would want to know that it is needed and needed now.  If she understood the 'why', and agreed with the need, she is quick to jump on board."  I asked for  a plan to get her off the vent and he definitively told me that wasn't something he could give me.  I asked again for goals for her to meet and it was still difficult to get a commitment.  It was clear to me that he was seriously considering the gravity of this decision and that was really comforting.  He ultimately pushed it off a day.  After I updated Julie and found I was in line with her thinking, she told the fellow a few hours later, "Just give me one more night"  to prove to him she didn't need to be intubated. Recalling this to her today, she said, "I can't even remember that." 

They took two ABG's that day and her CO2 was at a high of 65.  Normal is 35-45.  After using the BiPAP for a few hours she had brought it down to 58.  Julie was trying to show them she could improve.  Monday morning the ABG was 59 so relatively unchanged.  The push to intubate was in the rear view mirror.  She had moved some sputum, but it was bloody possibly from the pulmonary edema the first 24 hours and possibly from the inflammation the infection was causing.  I suggested we move her to Optiflow nasal cannula to help humidify her airways more effectively, move mucus, and give some respiratory support.  She tried it that day when I wasn't there.  She had a cough attack causing her to desaturate to 81% oxygen.  I suspect they put it on before it was heated up and ready.  I encouraged her to give it another try when she was up to it.  She was humidifying the BiPAP so that was helping the mucociliary clearance of mucus in the lungs.  She had increased her urine output significantly the night before mitigating our concerns about kidney function.  This has been a constant dichotomy of using Tobramycin at the same time as Prograf.  Her kidneys were stressed, but she had started to drink as much as they would allow on Sunday.  It appeared to be paying off.  In addition to this, she had insisted she get a feeding tube Sunday night.  Although the fellow didn't see this as a nutrition issue, Julie's anecdotal experience told her that having nutrients can only help give her the strength she needs to fight infection and recover.  She threw up the tube that night.  It was the first thing she was asking for as she was coming to Monday morning.  She has seemed to do just that since the second tube was placed.

Tuesday she wore Optiflow nasal cannula for about an hour and she moved more mucus than she had in the previous days.  Her respiratory rate was lower on the therapy than on BiPAP but she felt like it took more work to breathe which was counter intuitive.  Her respiratory rate was 5-10 bpm slower on Optiflow than on BiPAP.  Sometimes she said she just feels like she needs the pressure to breathe.  She is more "with it" the last few days and she is making incremental improvements.  She is on nasal cannula during the day when she isn't sleeping.  We are able to have conversations with her and she is able to chime in on conversations in the room.  The first few days was just yes and no nods with extreme fatigue.  At one point she asked me why it was so hard to keep her eyes open.  Her speech was slurred, and her motor skills were delayed and inaccurate. 

Tuesday night we did a CT scan since she was stable enough to be on a nasal cannula only.  I spoke with the Pulmonary Fellow this morning and received the good news that this looks like just a gnarly lung infection with inflammation of the airways.  They are doing some sensitivity tests of her Pseudomonas bacteria to some very new drugs that we should hear back on today.  My hope is, that this hospital stay exposed us to the very drugs it would take to kill this bacteria.  We are on one now with Tobramycin, and we just learned there were new drugs just released that Pseudomonas is sensitive to.  This could be the silver lining in all of this.  This was a serious enough situation they were willing to use IV Tobramycin on her allowing us to see how her kidneys responded.  They have been stressed but today (Wednesday) her kidney function is normal.  In addition, we are able to try some new drugs to help kill this bacteria.  We also found that it appears to look like fungal infection as well.  She has been treating a fungus called aspirgillus with Voriconizole.  They are going to do some more tests to confirm if it is a fungal or bacterial infection so they don't preemptively add new antibiotics if they don't have to.  The plan right now is to move forward with the regimen that seems to be working.  They don't want to throw a wrench in it. 

She has had chronic muscle pain throughout this process due to being more active the week before, and now due to the infection.  Just today (Wednesday Nov. 4) she told me when I had her standing for a few minutes that she didn't feel the pain she did this morning or over the past few days.  She has needed Tramadol each morning and night to get comfortable.  Today she didn't request it in the morning like she has.  It may be a sign that she is finally getting ahead of the infection.  She also asked to listen in on the doctors rounding on her.  Dr. Boltax was impressed she was more awake and wanted to be involved in what was going on.  She kept shouting out questions and I had to tell her to tell me the questions so I could ask them at the end.  One in particular that I know she doesn't feel like but needs to do was, "Can I walk?"  He was pleasantly surprised at her ambition.  They don't want her to over do it but are pleased she is trying to do more.  She asked for a nasal rinse, if she needed Neupogen shots (for low WBC), and "Can I eat?"  She also told him when speaking of the lung infection, "I want to hit it hard".  She had requested a feeding tube on the 3rd day of being admitted to start getting nutrients she was needing.  This helped her turn a corner from Sunday to Monday.  Dr. Boltax was very encouraged today in how she was acting.  

Julie's WBC came up and there is no need for Neupogen shots right now.  She finally was able to take a walk around the room, and eat a pastry with some apple sauce.  Today Julie looks better than any day in the ICU.  She still has a long road ahead, but we are glad she is at least on the right path.  Things looked pretty grim over the weekend.  We are going to keep praying for the best outcome without giving thought to the alternative.  I often get asked what people can do for us.  There is only so much need to go around and we have leaned on the same people for help with our kids deliberately so they have some consistency in their little lives.  They have been fine.  They talk about Minecraft, ride their bikes, play tackle football with each other, and tell me all about the playground when I come home to receive them everyday.  Charles just wants a set of keys and he is good to go.

Julie is very fragile right now emotionally.  She is needful of every encouraging word.  It is like she soaks it up and looks at me like a child.  She believes she has the strength to get through this.  However, after asking her if she thought she would die this weekend, she said to me, "I don't know."  Out of the blue, she asked me to sing her a hymn today.  I looked up like cousin Eddie and said "You serious Clark?"  She said, "Yeah, that one with 'Eventide' in it".  I sang her Abide with Me; 'Tis Eventide and then I Need Thee Every Hour at her request.  I finally realized being in Choir in High School had a purpose; to be able to carry a tune when my bride needed it most.  Other than that, it was a class with a lot of laughs with hiding the teachers shoes on the door jam and 70 piled up chairs.  She also told me regarding her nurse after being very sleepy Tuesday morning, "It's crazy how you can sense someones spirit with out even seeing them. She (Her nurse) is very sweet, and I can tell she cares about me."  This is why nursing can be such a noble profession.  Some of these nurses are so sweet and effective at lifting my wife's spirits.  It is such an important part of care.  

If you are reading this and spending time praying or fasting for Julie to live and thrive on one hand and thinking how she's not going to make it on the other, you need to remove the latter from your thought process.  Sometimes our faith is shadowed by comments like "Everything happens for a reason" or "As long as it is God's will..".  While these statements have truth to them, they are not necessary in a time of hope.  They are to be acknowledged in a time of reflection.  I believe they hold us hostage to what we can accomplish through faith and perserverence.  Doubt inhibits faith.  Faith is what has carried us and helped us lead a normal life through this and many other trials.  Doubt keeps us from realizing the impossible.  "Facing the facts" can and will cause us to give up sometimes when we need not.  After all, facts are malleable just as we saw this weekend with the "need" to intubate Julie.  I am not blind to the gravity of the situation or to the will of God, but I am also not blind to the power of a loving God.  This weekend Julie and I had some pretty candid conversations.  That said we hope for a brighter day.  There is no reason for us to believe that she won't pull out of this and recover.  Frankly, I don't care if I eat crow later regarding these bold statements.  Alternatively there has been many reasons for me to believe the opposite.  I'd be lying if I told you I haven't thought about what life would be like without her.  It has crossed my mind regularly throughout our marriage.  I have learned to acknowledge and not dwell.  It does not help to think about the hypothetical beyond just that.  However, there is a peace with both of us that all will be well.  I don't actually know how this will be, but I know what I have witnessed this weekend, and that gives me more hope.  I also believe that there is real power in the faith and prayers of others; after all, what else explains how we are able to function normally in such a chaotic time of a young couples life?