April 22, 2016

Don't Know Where We Are Going

Things have gotten really bad, really fast, and I can honestly say I'm not sure what will happen this weekend.

Aiden has been completely unstable, and seemingly out of no where. For the past couple of days he has seemed to be deteriorating and we are all grasping at straws as to what could be happening.

On Wednesday evening he had a huge break down. He purple cried for a good 20 minutes. This type of crying causes his body to clamp down on his ventilator tubes, which in turn makes him unable to take a breath, which makes him panic more... It's a huge snowball. The nurses couldn't get him to calm down. His heart rate was shooting into the 220's and they were having to give him manual breaths, so they had no choice but to give him a quick dose of heavy duty sedation and knock him out.

We thought it could be a sedation and stress issue, and tried adjusting his meds accordingly. He did ok that night, got him back to where he was before. Come Thursday around noon, he had another episode. But this one was much worse. His heart rate dropped really low, his CO2 went dangerously high into the 100s, and although his oxygen was at 100%, he was only satting at 75%. They once again had no choice but to knock him out.

We were able to get him stable later that afternoon, although they also had to go up on his ventilator settings to keep him under control.

Thursday evening at shift change, he was starting to follow the same pattern and begin to break down. I was able to sing to him and keep him calm, but he still had another brady desat episode when the respiratory therapist only touched him.

Today has been awful and scary.

He had a period of time that he repeatedly had brady spells, one after another for a good few minutes. His heart rate went as low as 47 at one point, and we had people standing by in case they needed to resuscitate. During this time his CO2 levels skyrocketed into the 100's again.

Something was going terribly wrong and he was deteriorating fast. We had to up his ventilator pressure by another 7 to force open his lungs and push the CO2 out of his body before his blood turned acidic.

We got a chest xray to find his lungs were completely collapsed and looking like they were surrounded by fluid again. The doctors grew very concerned his heart was failing and ordered an echocardiogram.

Waiting for that echo to come back was horrible. We gave him a diuretic in the meantime to put his kidneys into overdrive and push out all that fluid. Between upping the pressure on his ventilator and getting his body to release some of that fluid, we were able to stabilize him a little bit and slowly get his CO2 levels to come back down.

Thankfully the echo came back to show he doesn't have heart failure. But that didn't leave us any better off. This realistically means his lungs are failing him.

Right now the plan is to continue addressing the extra fluid. We will give him another dose of the diuretic and give him less food to help alleviate that. And we are going to keep him extra sedated to help him not get agitated and stay comfortable. We've all agreed with his medical team that we are going to give him the weekend and reasses his situation on Monday.

David and I have been at an emotional crossroad. We have given him blessings and we have received blessings during these past few days that state the very opposite of what's happening. Seeing him tempt death so many times the past few days has forced us to wonder, are these blessings our own wishes for him? Do we need to be realistic and consider letting him go? Is this his way of trying to tell us that he's done and wants to go back home? Do we keep on insisting we drag him along although he's clearly suffering?

We are trying so hard to hold on to that last string of faith, but it's also so hard to do that when his body repeatedly starts to shut down. I still have hope, but also feel so completely lost. I've been begging Heavenly Father to give me some sort of answer about whether we should keep pushing him, or if his time on earth is coming to a close and we shouldn't let him suffer anymore, but I haven't gotten one.

These past few days have completely shaken everything we've gone through with him so far. And if his body can indeed bounce back from this, we will be starting over with his progress.

I guess at this point we will have to see what the weekend brings and what his tired little body can handle.


  1. Trust your mother's instinct! I believe you and David know what is right for Aiden! You are stronger than you think!

  2. Prayers on our end will not cease. *hugs*