Regarding Landon – a lot has happened since my last post.  I spent much of the last week talking with the advanced care team, the attending physicians and various others reviewing Landon’s health the last 10 days.  The crash on August 8th does appear to be related to his body’s handling of the wean, mostly driven by the fragile state of Landon’s systems.  We examined the wean and the days leading up to it closely.  I asked for information for his drip rates, as well as any bolus meds he was given.  We looked at how things were administered, the rate at which meds were switched, and the pace at which he was weaned.  I learned about WAT scores, and how to use Landon’s condition and his vitals to measure the impact the medicines (or lack thereof) were having on him.  It’s been an educational week for me for sure!  No one did anything “wrong”, I don’t want to imply that.  Landon is just…complex…and has to be handled in his own unique way.  We were all learning what that meant in this case.  The team worked closely with me to come up with a much slower wean plan.  We talked about how his thresholds are lower, his warning signs more subtle, and his changes sudden and unpredictable. 

There was great teamwork involved and I felt heard and respected throughout.

I will spare you the details (but if you’re ever in a similar position I have tons more to add!)  and just boil it down to a few high level points:

  • Landon is fragile
  • Landon responds easily to medicine changes, and his vitals can be volatile
  • Taking certain medicines is hard on Landon
  • Weaning off of certain medicines is hard on Landon
  • All of this is hard on Landon
  • Landon was in the care of one of the best team’s I’ve ever worked with, at a world renowned facility, and even still…
  • Landon crashed, for two different reasons, twice in the last month and recovery was difficult.  We got lucky that the arrest didn’t cause more obvious permanent damage.
  • We don’t want to ask Landon to have to work so hard to come off of the breathing tube again. 
  • I promised him we would fight hard, but also that when the time came, we would listen and follow his lead. 

With all of that in mind, I made a plea to allow Landon to come home on hospice.  I felt sad requesting it, guilty at times, and was concerned the decision would be viewed as hopeless.  Or as giving up.  But I want to assure you we are still trying very hard.  We made it home early Saturday and I’ve been busy ever since. I’ve devised tracking sheets at home, and am actively managing Landon’s care, along with his nurse, and along with a growing team who is available any time.  We’re doing our best to manage his comfort, but also his health.  A Doctor is visiting Friday to check in and talk about some potential positive changes we can try.  I remain hopeful that Landon’s days are many, but even if they are not, he is where he needs to be.

If I had any doubts about whether or not this is the right path, they were immediately erased when we were able to get Landon safely in to his own bed.   After a somber start to the home going, including low temps, heart rates, blood pressures, and respiratory rates, Landon had a brief moment where he was in a nice comfy middle ground, and this oh so special sight, told me he’s happy to be home.