Thursday, September 26, 2013


It's good to be home...but I've been surprised by a few things and I haven't yet learned how to manage them. Danny still needs my help and support regularly. When we were in the hospital, it was pretty simple for me to meet his needs because he was my only responsibility. When I'm at home the kids need me also and obviously that can be demanding depending on the need! Last night Maggie needed help with homework/study organization, etc...and it was already late, so I felt like helping her was priority so she could get to bed. Right now, I think Charlie feels "neglected"--for lack of a better word", because he's not currently struggling like Maggie is, so she takes more of my time. At any rate, while I am caring for whichever child needs me, Danny is laying there waiting on me to do what he needs. That could be making sure he's taking the correct meds at the correct time. (there are so many we like to double check) It could be holding his controller so it doesn't fall and pull open the exit site in his abdomen, or maybe helping him move when he is too weak...there are so many things. Clearly Danny's needs are important and should not be neglected or put off. But the kids' needs are important too! So that's what I'm dealing with. I've got three people (and a dog :-) ) who all want/need me at the same time. Who do I choose and even though the priority is usually pretty clear to me, how do I put off the other two without them feeling some degree of sadness? I know this is just a day in the life of a mom with 1+ child, but it feels magnified since Danny is so sick and I haven't been home in a while so the kiddos' needs (from me) have stacked up over time.

Eye openers/reality checks:

This used to be a typical morning in our house...Danny jumps out of bed while everyone else (except Charlie) is still sleeping. Danny tells us to hurry up and get dressed so we can get going. Then, we are off to run errands, or watch kid sports, etc...My first morning home I got out of bed and proceeded to the kitchen without a thought. Danny can't reach the kitchen sink when he's still plugged into the wall at night. He can reach our bathroom and the refrigerator, but not the rest of the kitchen. The power module (the power unit that the controller plugs into) has to be plugged directly into the wall extension cords or power bars of any type. This means Danny's mobility is truly limited to how long the cord is. There's a routine of data keeping Danny must do each morning before getting dressed for the day. It's not as simple as throw on something and let's get going. The morning routine takes him at least an hour, depending on how he feels/fast he can move.

I'm trying to imagine how it would feel to be attached to a power cord and limited to its' length without switching myself over to battery power. Even if I didn't feel restricted and miserable before, I think that would do it for me.

We've also been discussing our action plan in case of a power outage. He is on the priority list for power restoration since his life is dependant upon power, but that doesn't necessarily mean it will come back on right away. In talking through how a generator works, neither one of us feels safe using a regular gas one to serve as his power source. Here's why...the power module or battery charger must be plugged directly into the wall--no extension cords or power bars. That would mean the LVAD equipment would have to be directly plugged into the generator, which would be outside. His equipment is not in any way water fact, Danny will get electrocuted if it gets wet. Neither one of us is wanting to bring the plugs for his LVAD equipment outside where a generator would be because power generally goes out during storms where water is present. It's just a risk that causes us both stress just to think about. So, we're looking into a whole house or partial house generator, but are definitely unsure and frightened of the cost.

This morning I looked at him and the outside corner of his left eye was all bloody. We think it's just a popped blood vessel, but are waiting for the doctor to return our call.

Danny appears to be retaining fluid's like he has a layer of blubber all over, which is unusual for him. His breathing seems to be more labored than it was when he was discharged. Of course, his eye is scary--but maybe no big deal at all...waiting to hear from the doctor.

Is he going to get better? Stronger? Will it really be safe to leave him alone at some point? Will I even be able to function at school when I do go back? How can I be three people at once for my family who needs me right now? Caring for Danny was much easier at the hospital because they were right there should any problems arise. I'm so scared something will go wrong. I'm so scared I can't handle an emergency. I keep reminding Maggie that no matter how out of control she feels reality is that God is right here with her. She is not alone and He is never going to forsake her. We have to live by faith sometimes/often times because our feelings aren't right--they don't line up with what the Bible says.

Father God, help me to be still and know that you are God. Help me to trust in your control over Danny's health and rest in the peace that can only come from you. Help me to not worry about tomorrow but be thankful for today. Help my faith be so evident that our kids see it and want more of their own. Help me to train the kids in your ways by example and not by words alone. Keep Danny his eye and prevent any bleeding elsewhere in his head. Give us both rest as we are exhausted. Help Danny sleep at night and take away nightmares. Use this time to draw our kids closer to you than they thought possible.



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