a little more information

Thank you all for your responses and love. It means a lot. It's been a lot to process and a lot of feelings appearing along with it. It probably took me 4-5 hours before I could even get myself together enough to make the five minute trip to the cafeteria and back without raining eyes, which I did unsuccessfully.

Tyler ended up coming today so that we could talk with the doctor and better understand everything. That was a big part of my lack of explanation in the last post. I didn't know what to say because I didn't understand their reasoning well enough. And the questions I did think to ask (there weren't many), I couldn't even remember his answers to because my brain wasn't working by that point (though, he hadn't explained what I am about to explain). But the other part to this, too, is that this is something that needs to be communicated as thoughtfully as possible to her to get her feedback and direction with all of this, so we'll be pulling in Child Life tomorrow to do that (by the time we chatted with the doctor today, it was late & they were gone). But due to the lack of that needed conversation, and the fact that the eyes of our offsprings read this at times, I'll be a bit more vague in this than I will be in a later posts.

(PHOTO: It felt really good to have him here to hug for a while before he had to leave.)

EXPLANATION

If you saw my update yesterday, there are certain things you likely understood about it, and we learned that the pediatric version of all of that means all of that, too, but there is a bit more of a "we aren't sure, but we feel like we might be heading down this path, and we don't want to miss the opportunity to provide the right support for it," as well as "this can be better for her mental health since it removes the hospital from the equation." That's a big part of her struggles, when she's sick enough to be hospitalized, is that she has to be here.

He also said their kids that transplant at this hospital are automatically put into palliative care for two reasons: (1) they have really complex care needs, and (2) it covers the what ifs and prevents regrets. So, they go ahead and build all of that into the structure of care that they provide. The hope is to reduce the "if only we knew to provide this" part to it all and make sure they really provide the best care they possibly can for all potential situations. It's the same idea for her situation.

On top of that, he wants to add hospice for her because of the additional access it gives to us for whatever care she might need. While there are the current health issues I've discussed over the past few months, she also has the major underlying one. And that needs to be factored in when things like this are happening. They want all the pieces in place to give us access to everything to provide the best comfort and to respect her needs the best we can.

He also said she will still have access to all the doctors, further testing, feeding clinics, continued exploration of solutions, and things like that that we have now. Those things won't go away. It just means that we're being more aware and that care is being transferred to a home setting with a couple different teams that are made for this and all the possibilities. While a very emotional change of things (should she agree to it), we appreciated his reasoning for it and felt like it made a lot of sense. It doesn't mean "it" is going to happen soon, but we're acknowledging it's on the table and making sure we provide the best care for whatever direction this goes.

UPDATE

We're still here. She'll hopefully be discharged tomorrow. We started feeds today. She needs to be up to 30ml an hour to go home. Physical therapy came. We'll probably get her signed up for that at home. I can't remember if I already said she is physically (fat, muscle mass) like a child right out of transplant. So, she has a lot of muscle she needs to rebuild.

Anyway, I'll update more when I know more, but thank you again for all the hug, love, prayers, and support. It's meant a lot over the years and continues to now. ❤️

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