To help the kids remember what and when they need to do important things (especially for when we are not home to help), I made before bed checklists that are taped to the bathroom mirror, and a take to school list, which is taped to the door. It's worked out pretty well so far. Well...seems that Danny and I need a list now too! Danny has an "emergency kit" that he must have with him at all times. This bag contains a spare controller and two spare batteries in case of controller malfunction, or low battery power. Since we've been home, we have forgotten to bring the emergency kit with us when leaving the house. So far that hasn't been a problem...but we certainly cannot forget that in the hospital Danny had two controller malfunctions wherein we had to switch to a backup each time. That only works effectively if we have the spare controller!!! The other thing that has not become habit yet is to always have a raincoat and umbrella on hand. Danny went with me on a little errand yesterday just to get out of the house and we didn't even think of the cloudy sky until after arriving at the grocery store. Getting the controller wet would result in electrocution and possible death. These are things we just cannot forget anymore!! So, Danny and I will have our own checklist on the backdoor...
1. Emergency kit 2. Rain gear
It's still hard getting used to being attached to a power cord at night. He really has to make sure he is ready to stay near the bed before switching to AC power because going back and forth between AC power and battery power is a pain!
Danny tires easily, but is trying to regain some stamina by walking in little amounts each day. He seems to be sleeping a little better at night now...I'm not though! He is taking up most of the bed because he likes to sleep at least in the middle, if not a little more toward my side, to make sure his controller doesn't fall on the floor. We are trying to figure out the best way to deal with this issue. Remember, it's a computer that is attached to his driveline, which is attached to his LVAD (heart pump), which is attached to his heart! So, the controller falling on the floor would hurt! Right now, he is putting the controller in the pocket of a pair of shorts but it keeps falling out. I'm thinking of getting a pair of comfy gym shorts and sewing (having someone sew) a pocket on the outside of the shorts with Velcro on the top. This would keep the heat from the controller away from his skin and the Velcro would prevent the controller from falling out. We could also get a pocket sewn onto some sleep pants...Lots to think about and it's tricky to find ways to make his life feel as normal as possible. Having a mechanical pump attached to the heart is really far from normal!
Danny's fine motor skills still need some work...he's very shaky and controlling a mouse and typing are not up to par yet. Part of his self-designed therapy is playing computer games with the kids....they are actually beating him right now and are loving every minute of it!
Danny will be reactivated on the transplant list as soon as he is recovered enough from the LVAD surgery. Receiving a transplant could be very soon or a few years...but that's God's timing. We go back to Ochsner Thursday (weekly appointment) and as always, the possibly of being admitted for blood work issues exists. I'm so thankful for every second we are home because life right now is truly about being on constant alert that Danny could be readmitted and soon, we could get the call for a transplant. Life can be "normal...what's that?" and then the extreme opposite of normal just like that.
Thankfulness...that's my overwhelming feeling today!!! Life, family, friends, strangers, community, medicine, technology, coworkers, God's faithfulness and peace, rest...I could go on and on.
To those who have (and are continuing to) prayed, supported financially, supported by taking care of our kids, cooking, and the other many and behind-the-scenes ways, thank you!!! We love you and are so blessed by you!