I learned that doctors don't run "fire drills" for their patients.
This morning (after the kids had been gone for about 20 minutes, thank goodness), Danny and I switched him over to battery for the day. When he was on battery, Danny did a controller self-test, just like he does every day. The controller went through the self-test and at the end, it alarmed and the screen said "system controller hardware fault...change controller...call hospital contact". Danny and I hesitated for a moment in complete shock. We then jumped into action...paged the LVAD contact on call, called the nurse, and grabbed the emergency bag with the spare controller. The LVAD coordinator called me back as the charge nurse was coming in the room. The coordinator stayed on the phone while I went through the steps to change out the controller and the charge nurse hovered very closely (I was grateful for the hovering!!). It was extremely intense and not as quick and smooth as I would have preferred; however, it was the first time in this serious emergency and in the end, we did great.
Afterwards, the three of us (Danny, charge nurse, and I) sat there together, completely stressed out and exhausted. The nurse admitted that changing out controllers is by far the scariest thing she does at work! I said that at first I thought it was just a test ("fire drill") to make sure we could handle an emergency and she said NO WAY...they would never scare us like that intentionally!!!Think about it...The controller is the computer that runs the motor that functions as Danny's left heart. I had to unplug the driveline (power cord that attaches to the controller and the heart pump) from one controller and plug it into another controller. That means that his heart pump was not working during the time (seconds) the driveline was not connected to either controller. If that changeover process takes too long, Danny dies. Even now, about 9.5 hours later, my stomach still hurts when I think of the pressure and consequences involved in that.
The coordinator came to the hospital to bring us a new controller to act as our spare and took the broken one to send back to the company for an "autopsy" :-)...
When it was just Danny and I left in the room, I grabbed Danny's hand and got on my knees in praise, fear, helplessness, thankfulness, dependency...I'm flooded with praise and thankfulness that God gives me the ability to handle an emergency in the moment and break down later. I'm helpless and stricken with fear without the strength and comfort from the Lord, and completely dependent on Him for every part of this. As we prepare to go home, this experience hit me like a ton of bricks that just like we, as parents, are given our children as gifts from the Lord, but he gets them back one day...in the same way God has given me Danny to be my husband and our kid's father and his parent's son and his sister's brother...but the truth is that Danny is God's child eternally and there is a time when God will call Danny back home. It wasn't today. Thank you Lord that it wasn't today. Help me and all of us who love Danny so much trust you that your perfect plan for his life is perfect. I don't know how to live without Danny and I don't want to. I just can't bear to think about it. BUT...I know that whatever the outcome is of this LVAD and future transplant, "as for me and my house, we will serve the Lord!"
I'm not living in fear of living without Danny. We did have a scare today but the backup plan was successful. Thank you Lord for the technology you have helped man create! It's amazing! Thank you for life and life through technology!
Switching topics to the infected driveline...
The driveline exit site is still red and a little inflamed, but the drainage has dried up. The doctors think it was just irritated by the newer dressing change kit, which uses alcohol instead of soap and water. We are going back to soap and water until the site is much further on its way to being fully healed.
I THINK we are going home tomorrow (Monday). That was really exciting news for us until Danny's controller failure. The controller doesn't ever have to be changed for most LVAD patients and Danny hasn't even been discharged from the initial surgery yet...I anticipate routine prayers and standing on 2 Timothy 1:7 "For I did not give you a spirit of fear, but of power, love, and of a sound mind..."
When I'm not thinking about being scared of Danny's electronic parts failing, I'm sooooooooo excited to think about home! I'm going to be the best wife, mom, cook, cleaner, picker upper, ironer, organizer, yard worker, teacher, nurse for Danny, and anything else I ever may have not appreciated as much as I should have!!!
|We know a young guy (Charlie's age) who decided (on his own) to make these bracelets and sell them to raise money for Danny. Wow. That's a special kid with a precious, caring heart. Thanks sweetie...I can't wait for my next hug!!|