Today was a down day for Lea, in that she decided to be depressed about her situation. She was very quiet about it, but she told me, when I questioned her about what was bothering her, that she “couldn’t move.” I don’t think that is what she meant; I think she meant that she doesn’t have full use of her limbs. And, just to prove it, she wouldn’t move them at all today.

Yesterday she was able to move her limbs much more than today, and when she was receiving physical therapy she was able to move pretty well, but she just wouldn’t move on her own at any other time. She wouldn’t attempt to squeeze an exercise ball, and wouldn’t give her frown muscles a break by smiling.  It was just one of those down days. She’s entitled, for sure.

She asked me to spend the night with her, but interacted with me as little as possible throughout the day. My brother observed that she had decided she was going to suffer, and I should have to suffer with her. Most of the time she had a grim frown planted on her face, and stared at a spot on the ceiling. When I talked to her I would position my face in front of hers, and she would look at me with a blank stare as though looking past me at something else.

She is depressed, and we knew she would have some of these days. I will spend the night with her, sleeping in a chair next to her bed, between visits from the nurse and the respiratory therapist. Tomorrow morning my brother is going to come sit with her while I go get some rest. I plan to wash her hair in the morning, as we usually do, but I think I’ll leave tomorrow’s bath to the day nurse.

Clinically she is doing very well. She has been breathing on her own, with minimal ventilator support, since Wednesday. If she can keep this pace she has set for herself, she will be on low enough ventilator support that a speaking valve can be installed, and she will be able to speak. Installation of that valve is tentatively planned for Monday afternoon!

Once that valve is in place, a “swallow study” will be conducted to see if she will be able to eat with the valve in place. She has already requested “red Jello”, so we’ll see how that goes. If she can tolerate eating, and her system can handle processing food again, we can be looking at the removal of the feeding tube and stomach pump in the very near future. That means the only tubes left would be the chest and abdomen drains and the IVs. Once those IVs are replaced by medications in solid form, and the drains are eliminated, she will have complete freedom once again.

Can you imagine what an awful road this would have been for someone who didn’t have his Father to lean on? Having felt the weight of the down days, and the tremendous highs followed by devastating lows in the same day, I can’t imagine anyone being able to handle it emotionally without the blessing of His peace. Your emails and other types of support were also extremely valuable in helping me through the bumps in the road, as well as the potholes that seemed like bottomless pits.

She doesn’t currently have any other real problems, other than her muscle weakness, and I’m sure tomorrow will be a little brighter. We will continue to encourage her to exercise, and will closely watch her other needs to make sure she gets the support she needs to continue moving forward. Thank you for your support, as always. I look forward to being able to report a better day tomorrow, full of her sunshine and dynamite smile!