Lots of Things

I’ve tried writing this post so many times (meaning, a post to update about *all* the stuff, not meaning any new bad stuff), but I’m having a really hard time doing it. It’s a mixture of having too many things to say and struggling to organize all the thoughts well enough to put into written word, as well as still feeling really lost and directionless.

F O O D

Emma is managing maybe 600-750 calories a day. One of you mentioned trying pudding with carnation instant breakfast powder mixed in to get a lot of nutrition in a small amount, and that has helped, thank you! For the first 2-3 days, and along with soups, she was getting in about 1100-1200 calories because of it. But, for whatever reason since then, she can only handle about one pudding a day, as well as soups. She’s isn’t tolerating formula at all. Currently she’s chosen to do no solid foods because it doesn’t seem like her body can handle it, and that’s often a catalyst to sending her back to the hospital.

(FYI: Typically I try to keep our diets pretty healthy and include as much whole food as possible (it’s how I “cured” myself of fibromyalgia), but Emma's body can't handle a lot of normal things. So, right now we have a get-whatever-we-can-get-inside-of-her goal.)

R E H A B

Her muscle mass is comparable to a kid out of transplant, so she’s started rehab and goes a couple times a week. She really enjoys it. Aaron is her physical therapist, and he’s really fun.

The biggest problem is we can’t seem to get enough calories into her for it, which can leave her light headed and dizzy afterwards (even up to a couple days after). The hope is that not only will this help her regain muscle mass, but maybe it’ll help wake her digestive system up more to make that easier to do. (We’re also hoping to get more answers on how to feed her better from however we move forward with palliative care and/or hospice, since feeding clinics seem nearly impossible to get into.)

L O S S O F F E E L I N G

She’s had a couple changes recently that help identify some things more definitively.

(1) Her urge to urinate is returning, hopefully permanently, proving it *really* hadn’t been there, which is something we highly suspected. She would go sooooo long between using the toilet, and then she would fill the hat up, plus more, and the crazy part is she had no idea she even needed to go. Like, she couldn't feel that urgency. That means she had over 900 ccs of urine in one 20-30 min long bathroom break (which is around 30 oz, whereas most people go when they have 8-16 oz of urine in there).

(2) Then essentially the same thing happened with her stomach. She didn’t know she was having a lack of sensation, but last Wednesday, after rehab, she was shocked at how well she could suddenly feel her stomach when she was drinking. I asked her if she felt like there was a loss of sensation in there, and she said she knows that there is. That there *still* is. (Her intestinal area "feels weird" and has through all of this, so we suspect there's some loss of sensation there, too.)

(3) She says her legs and arms feel weird sometimes, too, but then other times they’re fine. Sometimes her finger tips and toes will tingle, but then other times they don’t. I’ve told the doctors this before, as well.

I’m hoping altogether that this is enough for them to consider, with a little more certainty, that it might be nerve/spine related. Currently it feels like there are so many possibilities that it's hard for them to narrow it down more specifically.

P A L L I A T I V E C A R E

We met with a really awesome palliative care nurse before we left the hospital on 5/4 (the last admission). We talked for about an hour while Emma slept. She said she was going to check on some things and then get back to us once we got home, but she “dropped the ball” (her words) and apologized profusely when we ended up giving her a call and checking on things last week. Anyway, all that to say, we haven’t gotten it set up yet, but we’ll see them next week, find out the details, and I’ll update more then.

H O S P I C E

This is probably where we feel the most lack of direction. We haven't been able to talk to anyone about it yet. We don't understand much more than we understood before. Her hem/onc recommended it, palliative care said it looked like we wanted to do too much for her to qualify (and explained it differently than hem/onc), her PCP was surprised by it, then another specialist told us if hospice was recommended, we should do it. She said that it doesn't always mean that a person will die in that time frame, but it does mean it's a really complicated situation and hospice has a lot it can offer. What that is exactly, I still don't know! We really want more details.

S E C O N D O P I N I O N S

We feel like we’ve officially maxed out this hospital. They’ve essentially said as much. It’s an unsettling feeling, but we also know Emma’s a pretty unique case. FA seems to do that.

We’ve read your comments where you guys have discussed your personal experiences through your GI troubles, the different tests, formulas, laxatives you had to go through before you found stuff that worked better…and they haven’t done that for Emma to the same extent. I’ve asked them to, but I feel like we’re in a realm that they aren’t usually in.

So, we’ve talked with Emma’s PCP about getting second opinions through the Baylor health care system. We’ll still stay with the children’s hospital, but maybe the fact they’re not limited to pediatrics (since they're able to offer some things to adults that they can't to kids), and it’s a large hospital system with a wide variety of doctors to choose from, will get us some different opinions, medications, and answers.

E M O T I O N S

I’ll write about this in another post, but this has all been very difficult emotionally. All the conflicting feelings and grief and all of it. The future feels so unpredictable right now, but I'll write more about that later. This is already too long.

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