another update

It's been nearly five weeks since she stopped taking feeds. Since the last update, she has slowly started taking more formula (maybe half of what she needs), but last night she refused them again and hasn't started back up.

PHOTO: This was taken 2-3 weeks ago when we went to have her checked out.

I meant to update right after my last update, about the emotional side of things, but I find getting time to myself to write is a rare thing. When I have four other kids that are sharing more of their "mom time" with Emma, it ends up leaving me with less personal time, since I'm having to tap into that time to turn it into more "mom time" for them.

My anxiety starts to grow and grow as the days go by, and she still can't get enough nutrition into her. It's very hard to lie down for the night and sleep when I know it's another day she won't have enough food. So, I've decided to deal with this anxiety by just listening to it and getting her checked out when needed, no matter if that's every day (which it hasn't been, as reassurance usually lasts a week or two after we see the drs). I took her to the family doctor a week or two ago, (who does whatever I ask, which is really nice) to make sure she was okay still. It helps to settle things emotionally and feel reassured that she's still okay.

But, anyway, that x-ray showed she was still constipated (after 2 weeks of 5 laxatives a day). So, I reached out to hem/onc and asked if we can increase it. They said yes, and I've been giving her some 6-7 times a day. I've also been able to start feeds very slowly. It's so slow that the feeds don't offer much in the way of hydration, and she also can't tolerate water boluses as much as needed, so I still have to take her off of the feeds to run water at times. But she has her feeds running 24/7 otherwise. We did get to a point where she was getting about half of what she needs for her feeds. But last night she refused feeds again and hasn't accepted any again. Hopefully this will be short lived. She is still taking in about 300-700 calories by mouth.

Today we had another hem/onc appointment. They've decided to cut back on her Jakafi (for GvHD) and said I could increase laxatives. I'll be giving her 11 a day for three days. Then we'll reevaluate at that point on what to do. She's very tired all of the time. She doesn't leave her bed much anymore. Her energy level is matching the low amount of calories she's taking in.

Her GI appointment couldn't come soon enough. It's hard to not feel angry at how long it's taking. It feels like needless suffering for her, but at the same time, I see that we're gathering more information and understanding of what is going on. I'm just worried that the doctor won't actually hear me when I explain what is going on, and it'll take time for him to come to the same conclusions that we have. (This seems to happen far too often.) And we're tired of waiting. Also, there needs to be more GI doctors out there! I really hope it doesn't always take this long to see him.

PHOTO: This one was taken today. By the end of the visit, she was wiped out. She had her eyes closed for a lot of the drive home. I really hope they can fix things.

Oh, and she'll also be having a PFT next week to check out her breathing to ensure it's not something completely unrelated to what is going on (because she was complaining of difficulty breathing, which sometimes happens when she gets really backed up). Hopefully that'll look good.

Anyway, so that's our little update!

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