She's Different

A little bit of rambling is coming your way with this post because I am in a jumble.

I'm trying to adjust to what's new. She is not the same. How so? Well for one thing she was in bed at 9:20 tonight. She didn't nap today or yesterday, just lying there, kind of in and out of drowsiness. Usually, even without napping she would be up till 11 or so. But twice this week, around 8:30, she starts laughing until she's crying so the past 2 nights I have put her into bed early to head off the sobbing. It seems to be what she needs but I'm not used to the quiet evenings by myself. It feels weird and empty. All is not right with my world.
Also, I cannot get used to the stillness with which she sleeps. Yes, she takes clonazepam for sleep, but never has she slept so still. Barely moves a muscle the entire night. It feels so odd.
So many changes in such a short period of time. Right now it seems that every couple of days there is something new, different. It's really hard to keep up.
She's basically happy though, so I will focus on that. Lots of people are living in this world and they are not happy. She is, and I am grateful for it. But, I am losing my grip on her, she is starting to slip through my fingers. I can feel it. I wish she'd plateau for a while so I can have time to adjust, not sure that's going to happen though.  ::sigh::

Mid February

Sarah is doing pretty well at the moment. I am still tweaking her feed/eating routine but her weight is remaining stable at 84, so that's good. I've ditched the Isosource completely and using Real Foods Blends along with her one meal by mouth daily. Waiting to see if insurance will cover. Truly, the best thing I could do for her is to get a Vitamix blender and blend all the typical foods she used to eat. Then just push them through her gtube. That way she could 'eat' anything. They are quite pricey so it's on the back burner for the moment.

At this point, for some reason, Sarah can only fall sleep if I roll her onto her left side and position her with a pillow or two. Also, she does not move at all during the night anymore. This is new. There are so many changes in the past few months, it's hard to adjust. Each change brings about my need to assess for other issues. For instance, her newly fisted right hand means I have to monitor her skin on her palm for breakdown and keep those nails real short. Her lack of movement at night means I am wrestling with whether she needs to be rolled during the night to her other side, but that means she will wake since she doesnt like that side. Plus it interrupts my sleep, which is a very bad thing for me, I have learned. Poor sleep leaves me mentally and physically drained which makes it much harder for me to handle what's happening with Sarah. So for now, she will sleep as she wishes.

This is a really difficult situation, there is no winning here. There is no control, no definite trajectory. My hands are tied as I watch her lose more and more of her abilities all of a sudden. She seems amazingly accepting however, not frustrated at all. She is relaxed and happy, wakes every morning with a big ole smile. For myself, on the other hand, it is very sad. My emotions are all over the place. One day up, the next day down. It's terribly, terribly hard.

I have joined a couple of online support groups and have read a few books on "anticipatory grief", which is what I am going through. I didn't know there was a word for it. The thing is, I just want to stay afloat as she goes down. I don't want to drown as I lose her. I don't want to lose myself as well as my daughter. I want to live on, enjoy my sons and grandchildren, all my family members, my friends too! It's easy to lose friends when going through this kind of thing. Not gonna lie, I can probably be a little depressing at times. But they are hanging in there, for that I am grateful.

Here she is on her second birthday:

And here is my sweet girl now:

Plugging along

I am figuring out a feeding schedule for Sarah. I am aiming to give her 3 'meals' a day because that is all her stomach has ever known and I think she can handle it.  So, that means 2 bolus meals and one meal, by mouth, of mac and cheese because she can still eat that. I really dont want to take food fully away from her unless I have to, she loves to eat and looks forward to meals. No feeding pump for now, at least.
The issue is what type of feed to give her thru the GTube.  Right now I have Isosource 1.5 as recommended by her dietician. She tolerates it well overall, but when I give it for breakfast (240 ml) it just doesn't hold her well. She is hungry but can't take any more fluid volume than the 240.  So I am trying Real Food Blends.  Basically its prepared 'real' food that comes in pouches. It's much heavier than the Isosource, so I think its the answer for breakfast. For the next meal she gets mac and cheese and a banana and maybe vanilla pudding if she is still hungry. Then for the last meal she gets the Isosource because she never ate much anyway at this meal so the isosource should be plenty. The amount I give her depends on how many calories she still needs to round out her day.
So that's the latest on the food front. I'm going to keep up this schedule for a week or two to see how it goes. If she doesn't throw me any curve balls then I will see if the Real Food Blends can be covered by her insurance.
One odd thing this week, the past couple of evenings her skin gets very warm and her pulse goes up. Her hands are hot, which is unusual for her, but no true fever. So last evening I laid her down in her bed to get a better look at her and she relaxed, she cooled right off and her pulse returned to the usual. She was happy and giggly. I let her rest there until bedtime. All was well. Nothing ever stays the same right now, lots of changes with this awful BPAN.