Friday they told us about Emma's diagnosis (if you missed it, it's gastric dysmotility and likely gastroparesis, with potentially more diagnoses to come). They told us that if we wanted to wait to leave until she was up to her intake goal, to make sure she could do it, then we could stay. Or, if she wanted to go home, and try it at home, we could do that, too. We have an out-patient follow up with GI in a few days, so we'd have access to seeing them soon. (It's the one we scheduled a while back but couldn't wait for before getting her admitted.)
Emma wanted to stay. She wasn't feeling better, and it was too hard to get readmitted this last time. So, she felt anxious about going home. Plus, we weren't even halfway to our goal, so it felt like a big leap to head home.
Simultaneously, she had reached her limit emotionally. Friday she was overwhelmed. Saturday it was even worse. She began to refuse all of her medication. Refuse to comply with vitals. Refuse to make eye contact with most people. She didn't want any of them touching her. She didn't want any of them in her room. She didn't want to be sick. She didn't want to be there. She refused her eye treatment, her contacts, and refused to even put her hearing aids on.
She was done. I think sometimes she just has to have that. Those moments where she does get some control, after a lifetime where she hasn't.
And I could see her hope was fading. This wasn't what she envisioned fighting to live to for. She wants to be here. Just not like this. Gastric dysmotility/gastroparesis doesn't have a cure. While it's an answer to things, it's a bad one. And the new medications have bad side effects. After everything, it feels like it's such a big ask to expect her to find the strength to deal with this, too.
As an aside, I think there can be a tendency for people to sometimes only want to hear how others go through tough times with a smile on their face, never complaining, never expressing difficulties. As though it somehow makes them better because of it. But I think that's not very...nice. It isolates them. Makes them feel all the more alone in their pain. I think what we should do is expect others to have hard times, during hard times, and plan to sit by the dark pit they've fallen into, and know to reach out to hold them in whatever way we can, promising to not leave them there alone.
At one point, I asked the nurse for a few minutes of privacy, sat down by Emma, and wrapped her little self up in a big hug. She melted in, and we sat there in silence for while. I knew it wouldn't fix anything, ultimately, but sometimes I think mom hugs are a little bit healing, due to the nature of the bond, and she needed that right then. I reminded her that it was okay to feel everything she was feeling and to cry if she needed to. If she needed to talk, I would listen.
On Saturday morning, the hem/onc came in. He's a different one, not one of the transplant doctors. He was aware that Emma was refusing everything, and he said that usually this is a sign that the hospital isn't helping anymore, and she needs a break. She needs time to herself and time to recover. He was very empathetic and kind. He told her he felt like she should consider going home. If she needs to come back, she can always come back.
I have my own anxieties over how it went last time and how hard we had to push to get her admitted, and I discussed that with him. He said that five weeks was too long. She should have been admitted much sooner and that she would be in the future. I asked for clarification, and he said if she goes more than a day or two with no feeds, I need to bring her in, and they will admit her. If we take her home, and she doesn't end up being able to increase her feeds, bring her back. That felt much better to hear.
So, Emma thought about it for a bit, and that's what we did.
The ironic thing was, Tyler had booked a hotel nearby, so that he could bring the kids closer. They're not allowed in to see her, but it would allow me to go see them and be able to come back and help with Emma if she needed it. Tyler does great when he's with her, but due to her age, he can't help with all the things she needs (toilet, showering, dressing). Usually the nurses step in, but with her hitting her max and not wanting them in the room and not wanting them to touch her (and they're fantastic nurses, this has nothing to do with them), we tried to come up with another solution. Some way to keep me closer while also allowing me to spend time with the other kids. The hotel was that answer.
But then she was being discharged, and we had this hotel booked that we didn't need anymore. So, we went ahead and spent the next night in a hotel. It was pretty fun. Being around her siblings, who are her very bestest of friends, really brightened her day. Their day, too. They were all very concerned and so excited to see her.
For the first couple of hours, she seemed more like her normal self. Bright, excited, laughing a lot. It was a stark contrast to what she had been like in the hospital earlier that day. And then the fatigue hit. As much as she doesn't want to be sick, she is, and you can see it all over her face when it happens, as you can see in the photo.
(I'm running a little behind on updates, so I still have more, but that'll come later.)
I am so sad that she is going through all this she fought so hard thru the transplant and after.. I just want to say you truly are an inspiration to me with how you deal with emmas illness and everything else life throws at you Sending you hugs and prayers
(((HUGS)))
Your words are some of the wisest I have heard in my life: "I think what we should do is expect others to have hard times, during hard times, and plan to sit by the dark pit they've fallen into, and know to reach out to hold them in whatever way we can, promising to not leave them there alone." Sending lots of love, and caring so much....Dianne Ploetz
Oh I agree so much with what Lorne and Guest#957c wrote. The awfulness of all the medical. The sibling love to the max. The exhaustion. And you, too, my dear, must be utterly, thoroughly exhausted and discouraged. I hope you get some recharge moments for yourself now that you're home. Sooooo much easier said than done, I know. Sending a heap of hugs! - Rachel
The sibling love jumps off the page. So glad they had those couple hours and wishing many more in the days ahead at home as the feeds improve and Emma’s strength returns.