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. 

I’ll try to catch you up on the last few days, but if it sounds confusing it’s because it is confusing.

Landon was having a great week. He made it off of the breathing tube, quickly on to nasal cannula. I even shared photos of me getting to hold him. He moved to a regular floor (out of the PICU) and continued to make progress. He was able to sit in his car seat, his wheelchair and hold his numbers increasingly well. His cough was productive, and lessening. His lungs looked good with improving scans. His wean of medication was going well and was escalated to a faster pace. He was smiling, alert to voices, and quite frankly just about as good as he gets from a response and alertness stand point. I traded off with my mom and headed back to work for a bit. She was also pleasantly surprised to see how well he was doing. We were all excited and relieved. I could picture his return, and had even started to picture a few things I wanted us to try to do as a family this fall.

Would you believe me if I told you that the same kid who was so ill last Thursday that we weren’t sure he was ever going to recover his respiratory drive was on track to go home just 8 days later? You should! Because it was true! Landon was rocking it, and was prepped to go home on Friday. Thursday evening the doctor called to confirm prescriptions, oxygen tanks, and the discharge plan. This was almost behind us.

Just a few hours later, now Friday morning, I woke up at 12:15 am to a call from my mom. I didn’t have to answer to know it was bad news. After brief irritability Landon was starting to display respiratory distress again. He was retracting, foaming, and struggling out of nowhere. In the effort to calm him and keep him from respiratory failure he was put back on a breathing tube and moved back to the PICU.

We weren’t sure why this was happening. Was he getting another infection? Did something go wrong with his wean? Was he incapable of maintaining respiratory health for extended periods now?

Sleeping wasn’t an option at this point so I started my work day in the early hours of the morning and kept up with mom for updates.

His lungs still look good.

No signs of infection.

Maybe he reacted to the wean? Maybe?

My mind was busy as well. What if we can’t explain this? What if this had happened 24 hours later at home? Could I have gotten to him in time? Maybe.

I arrived back at the hospital mid-morning Friday and talked to both the PICU team and the pulmonology floor. The theory was that he reacted strongly to the wean. Weans can cause stomach issues, which can cause malabsorption, which can cause a compounding issue in a hurry. I’m hoping this proves to be true. That means it wasn’t Landon’s fault. That this is explainable. We can handle it differently next time to help him out. That maybe we can get home, visit family soon, take him to a hockey game, listen to some birds, take his Make a Wish Trip in November. Maybe.

Regardless of the cause, he’s back in the PICU on the vent.   Balancing sedation meds, fluid and 3^rd space problems that arise when he’s on an IV, and the general course of getting him extubated is proving to be an interesting journey again. Yesterday his lungs looked great, but he was having trouble waking up. He passed one one-hour test overnight. He failed the second. Today he is more alert, but is dealing with some fluid issues, which they are actively working on. None of this is easy. All of it is complicated. Lots of maybe.

We will continue to make steps toward getting Landon off of the breathing tube, then work hard to slowly and safely wean him from the meds. And maybe, when it’s all said and done, we’ll have a smiling happy boy again soon.

Holy Roller Coasters.

There’s a reason I haven’t updated as often during this crisis.  It’s truly been filled with ups and downs, and by the time I send an update I’m already wrong about how things are going.  I even hesitate to update family lest I cause unnecessary panic.  Or reckless hope.

You already know the events from last Friday night through Sunday.  Respiratory distress, septic shock, cardiac arrest.  Resuscitation.  Signs of cardiac failure.  Signs of spinal cord hypoxia. Signs of kidney failure.   We lost him once at 1:55 am Saturday morning, and I was preparing myself all weekend, practically at Doctors’ well founded orders, to lose him again.

Then we saw cardiac function return.  We saw intentional movement return.  Finally we saw kidneys, slowly, return to a healthy function. Landon overcame so much!  His lungs were even clear by now, and his vent settings to an extubateable status.

But during each trial he showed no attempts at breathing on his own.  Monday didn’t go well. Was Landon’s brain stem damaged during the arrest?  Tuesday didn’t go well. Was Landon’s brain gaining pressure that caused a gradual decline and we finally hit a tipping point?  On Wednesday I was pulled in to a conference room with a team of doctors.  Families with critical illnesses know that’s never good.  I’ve been in and out of these conference rooms since July of 2013, and have never been pulled to the side to be given good news.  These room are private, and stocked with tissues.  This is where they tell you things aren’t going well, or are taking a bad turn.  This is where they make sure you understand.  On Wednesday this is where they told me that so far, through multiple days of trials, Landon was displaying no effort at maintaining life sustaining breaths, and there was great concern that he might not regain that skill.  I confirmed our decisions regarding intervention, and our commitment to never choose quantity over quality, and that where this heads next is up to Landon.  I mentally prepared myself.  God has spent my whole life preparing me to be the mother I need to be.  And I’ve spent Landon’s whole life preparing myself to be confident in these moments, to be faithful in these moments, to be hopeful, but reservedly so.  On Thursday they did an MRI.  The neuro surgery team came by.  As did the rounding doctors.  The complex care team.  The chaplain.  No big changes.  No good news.

Friday morning came, and somewhat unexpectedly Landon was finally passing a breathing test.  They extended it, and at the end of the desired two hours he was still going strong.  The respiratory therapist asked if the plan was to extubate today.  I said I had no idea because yesterday we thought this wasn’t possible. He has continued on a strong path since then as well, and is now OFF OF THE BREATHING TUBE!!

Wednesday and Thursday I was mentally preparing for the worst. Today he and I made finger print birds, and if all goes well, I’m going to try to hold him later today.

I’m telling you this today, recklessly, because I feel hopeful.  And I might be wrong.  Things might revert. Landon’s body may still fail soon.  But sometimes hope, even if occasionally reckless, is all we have.