Maybe

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 3rd 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.

Reckless

 

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.

Faith Over Fear

I’m usually pretty open when we’re in crisis mode. For one thing we certainly appreciate the prayers, especially specific ones. For another, I’ve learned a lot from other families sharing their journeys and seeing what they’ve made it through. Sometimes it is encouraging, sometimes it is just raw and honest.

 

Landon is in a crisis now, and I’ve been quiet, because I didn’t know what to say.

 

Things have been pretty serious, and there have been multiple moments when I wasn’t sure where things were headed. I’m still not entirely sure. But I will be raw and honest.

 

On Friday, after a good day and an uneventful handoff with his nurse not long earlier, Landon went in to distress around 6:30. Moments earlier we were getting ready for movie night, and were about ready to bring Landon in to join us. Instead, he started respiratory distress to an extent I’ve never encountered at home. I worked on airway clearance, maxed out our oxygen concentrator, and used some nebulizer meds but quickly shifted gears to an ER trip. With our quick effort, we were able to get his oxygen back above 90, and I called the ER (who has never met us) to tell them about Landon and help them prepare for us. They handled us well, someone met me out front and workers gathered in the room to help quickly assess. He was stabilized on CPAP. The plan was to send him to Columbus, and the helicopter would be there to pick him up around 9:30. In the meantime, I gave him his meds, they gave him treatments, and he remained stable on CPAP with moderate settings for over two hours. When the flight crew arrived, I signed paperwork, and as they were getting ready to transfer him to their flight cart, I decided to get on the road because they were going to beat me there anyway.

 

When I arrived at the ER at Columbus Children’s, they weren’t here yet. Nor were they close. Soon I was told that ER was no longer the plan, and he would be going straight to PICU. I moved lobbies and kept waiting for their arrival. I called back to the hospital, and turns out they hadn’t left yet. Landon took a quick down turn not long after I hit the road, and kept getting worse. By the time I spoke to someone, he was on a ventilator, and his blood pressure was wavering. They were able to stabilize him, and got him air born after 1:00 am.

 

While they were stabilizing him at the children’s hospital, I chatted with a doctor as well as the flight crew. I learned that despite heavy medication to assist, Landon’s blood pressure plummeted again on the flight and his heart stopped.

 

For a moment, upon hearing that, it felt like my own heart broke.

 

He was at home hours earlier. Yet here I am in a waiting room at 4:00 am hearing the unthinkable. The speed with which he crashed hit me hard, only surpassed by the punch of the words “his heart stopped”. They did compressions for 10 minutes, and once a healthy rate and blood pressure resumed, Landon opened his eyes and looked at them. Those sweet blue eyes.

 

I was reunited with Landon around 5:00 am.

 

The room looked like a medical war zone. It was filled with people wearing yellow gowns. These minions, whose names I may never know, were still actively saving Landon’s life.

 

Landon was stable again. But he was very very sick. On top of an already fragile condition, he entered respiratory distress for reasons that may never be clear, and for the first time in his almost 6 years, he went in to cardiac arrest. All within hours.

 

It’s been a roller coaster ever since then as well.

 

The arrest itself can have negative consequences, and we’re still learning what that means for Landon. We know that on top of needing a breathing tube and working his tail off to recover from what is now pneumonia, he is also showing cardiac distress. That could be acute and temporary. Or that could be new and permanent. Or it could be a problem that was building and is part of why he crashed in the first place. We won’t know the answer to that until we see how his heart handles the next few days. In the meantime, he’s also having kidney issues. The nephrologist believes this will likely be acute and caused by the arrest. But Landon is incredibly puffy and fluid filled, and we have to fix that in order for his body to attempt to repair itself. But his kidneys are injured and aren’t up for a big challenge yet. So we are starting a treatment to assist his kidneys, in order to reduce the fluid, in order to learn more about how his heart can function in a more stable/less fluid packed condition.

 

We have been having some very hard conversations here, and trying to be thoughtful about all of the possible paths. I want us to be mindful of the end goal, and never aim for quantity without quality. So we are going to follow Landon’s lead. If his body is able to recover from this, and return to a more baseline state, we hope and pray we will take him home and enjoy more time with him, with the knowledge that the sand is now running out faster than we had hoped. If his body is not able to recover from this, we will follow that lead as well, and do so knowing we’ve done our absolute best to offer him the best care and love we can provide.

 

I am devastated. And there are pieces of this that are particularly more heartbreaking than others. My face has been soaked in tears. But there’s also a peace that surpasses understanding.

 

 

While I was waiting for hours in the second lobby for the troubled flight to land, I was particularly anxious all of a sudden. I put away the laptop I had been working on, and grabbed my phone again to check the time, 1:55 am, and sought out Facebook for a distraction. I landed on a post for a prayer for when you are anxious and worried. I read it, I prayed it, I cried it, and then for whatever reason I took screenshots in case I wanted to read part of it again later.

 

Saturday morning, when the dust had settled I was reading the rushed scribbles on the window that became part of the team’s assessment. Among those notes, a scribble that Landon’s cardiac arrest happened at 1:55 am.

 

At 1:55 am, I had no idea how bad things had gotten, or that at the exact moment I was reading that prayer, that Landon’s life was on the line. I didn’t know where things were heading, but I was already getting a reminder that no matter where this heads it’s not in my hands, and that Landon’s future is secure and full of love no matter what.

 

“We believe that you are mighty, and that you are bigger than this”

“We choose faith over fear today”

“Our future is secure in the place you are preparing for us”

 

Please pray. Pray that the amazing doctors, nurses and staff continue to make progress through this storm, and that on the other side of it will be clarity. Please pray for comfort for Landon, and most of all that in the midst of all of this he continues to know that he is Loved.

 

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