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?    


  1. How is it that through your challenges and trials you offer so much hope for all of us. Thank you.

  2. You probably don't remember me, but I used to work for Brigham and have a niece with CF. Julie has always been such an inspiration, such a fighter! I just love your mom and we will remember you and your family in our prayers.

  3. I believe this is a time of test for you and your wife from God. May your wife get well soon before they were happy healthy life. Amen.