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.