Doctors & Tsunamis

We took Emma to the emergency room, due to her progressing to the point of not eating by mouth, while in the midst of a week with no feeds. So, this is that update.

Every day when I wake up, I find myself feeling more and more upset over things and over how to help Emma. I'm pretty sure I've annoyed the doctors to death with my emailing, visit requests, and repeated questions about her well being (though, they never act that way).

I just can't figure out how what I'm seeing with my eyes (an Emma that rarely leaves her bed now, sleeps more than she's awake, refuses her feeds (first it was for two weeks, then we did a little bit of feeds, and now it's for another week with no feeds), can't eat enough by mouth, requires soooo many laxatives), and how what I'm communicating to the doctors keeps ending up with nothing more happening on their end. Where is the line? Where do we decide we can't keep waiting?

We need to see GI, and that is what they are waiting for. The appointment is made. It's just not coming soon enough. I've asked them put her on their cancellation list. I've checked to see if there are any other openings anywhere else with the children's hospital, but I can't get her in any sooner. So, we're stuck here, waiting.

When I look at Emma, I see my beautiful girl right in front of me experiencing all of this, but I also see everything that came before. Because it's all connected. Open-heart surgery, years of bone marrow failure, androgen therapy, so many blood transfusions, bone marrow transplant, viruses, brain bleed, virus-driven lymphoma, menopause, kidneys malfunctioning, years of being immunocompromised, years of restrictions because of it (our "pandemic" started in 2009, then ended six months before the pandemic), eye disease, and so many more things. All the suffering, trauma, so much missing out on life, and the physical, mental, & emotional pain that she had to go through just to be here today. Only to be here today. Stuck in her bed.

It used to all come with a promise. All the suffering. If you do this, you'll get that. If you transplant, you get to live. If you follow the doctor's restrictions, it'll be worth it. But, as I watch her life play out, I see that she's not getting to that very often. The light at the end of the fight, which requires the darkness to be walked through to get to it, doesn't seem to come for her very often. There isn't much in the way of payoff with her suffering, except to almost guarantee there will be more suffering to follow, just in a different form.

I don't say this to be negative. I don't say this due to a loss of hope. I say this because this is the reality. It is what is actually happening, has been happening for years, and we have no reason to think it won't continue happening now. It's unfortunately her story, and her story is part of our story because we're all sitting in the same car going through this journey of life. Only the seat she sits in continually hurts her, and we can't trade seats or stop it, no matter how badly each of us want to. Instead, we can only watch, try to shield her where we can, and do what we can to make her painful seat more tolerable.

And, as the days go by, all of that sits there, right on my chest, and gets heavier.

We had our first birthday this year, Tyler's. We did a private escape room, but she couldn't go. I stayed with her. When we did the actual party in the living room, she couldn't go. So we did it in her bedroom to let her continue to rest.

Everyone in the family is affected by it. It's hard to watch. I find the kids taking turns with her. She can't go to them, so they go to her. Sometimes I find them snuggling with her and talking. If they're near her, they help hold her arms still, as they uncontrollably shake, to try to lessen the fatigue she feels from it. They often hang out, watching shows she enjoys, because she can't do a whole lot else right now. We've tried to offer other things, but she can't do them.

There is a beauty that pain always brings. It provides more meaning to everything. Like, even watching TV becomes something special. Talking and laughing, while always enjoyable, is much more treasured. So, while the pain is sharper, the love is, too.

So, this is where I was emotionally & mentally when, this past Sunday, Emma woke up, was noticeably feeling worse, couldn't eat any food anymore by mouth (other than a few chips), and was refusing feeds still (had been since Tuesday). She felt way too full. We had considered it multiple times before, but with the doctors checking her out often and always sending her back home, we didn't do it. This time, though, we did. I packed her up, and we headed to the ER.

Spread across hours, there was the IV, the fluids, the blood tests, the x-rays, and the chats with the ER doctors. They listened, were concerned, and took it very seriously. It was a relief to be somewhere, knowing that by the time we leave, she should at least be able to take feeds again, hopefully.

They consulted with hem/onc and GI, and then they came back to let us know that they said Emma should be discharged. DISCHARGED. I was dumbfounded. Then I was furious. She wasn't eating by mouth and wasn't taking feeds, and I'm supposed to take her back home??

And then it happened. The weight of everything that came before now, and the weight of everything now, and the heaviness of what is waiting for her, made it to where I just didn't care anymore. I didn't care what they said. I had listened to them for long enough. I had let them lead for long enough. I had trusted their expertise for long enough. All it was doing was leading to Emma suffering needlessly, and the line was drawn. No more.

If you've seen Avatar the Last Airbender, think Avatar mode. ha. If you haven't seen it, then righteous indignation maybe is the next best description. It felt like every bit me of me had woken up, every gear in my brain had switched to utilizing everything I've learned over the years as a medical momma, everything I knew about all of this...and it allllll came out. It felt like a tsunami. For me, at least. She would be admitted, and they will start to actively fix things. Now.

With Tyler on speaker phone, we talked to the ER nurse, then the ER doctor, for about 30-45 minutes as the tsunami hit. We explained why that decision was completely wrong, explained the complexity of the situation, and Tyler explained why, despite the fact that Emma's newest x-ray finally showed a "typical amount of stool", we were still concerned. After 50 laxatives that week (literally), how could she possibly have a "typical" amount in there unless there was something wrong with her digestive system. If any of us took 50 laxatives, and barely ate, we'd be in a very different condition than that. Plus, if we go back home, this is just going to happen again and drag out more. It's been five months now that she's dealt with this (started in October). We're done. Enough. Is. Enough.

As briefly as I could, I told her Emma's medical journey through life, listing each major event, from the time of birth to now. I wanted to put her in Emma's shoes. Give her a reason to understand the importance of this. Explain the exhaustion Emma is feeling from having to always be strong, just to hit another deep disappointment as the next condition hits her. There is more we can do for her, and we need to do it now while she still has time left for it.

By the end of the talk, the ER doctor seemed emotionally connected to our situation and said, "No matter how we need to do it, we will get her admitted." She even took the time to tell me (when I apologized that she received the brunt of all of that) that I was advocating for my child, just as I should, and I was doing a very good job of it. I thought it was really nice, when she could have chosen to take offense or make things difficult, that she, instead, chose to be empathetic and make it clear she thought we had just done the right thing. She said she would never fault a parent for doing that. (It's a good example why, even with how incredibly frustrated I've been, we love this hospital.)

She left determined to get a doctor somewhere to admit Emma. Even if she had to go through each speciality just to end with the hospitalist. She came back a little while later, saying she realized hem/onc really was the only one that could take Emma, due to how complicated her health is, and said when she reached back out to hem/onc, she was able to make that happen. They would take her in.

So, almost 12 hours from the time we arrived to the ER, we were finally in a room, settled, and falling asleep around 5:45am. This is where we are now (minus the falling asleep part.)

A lot more has happened since then, good things, with doctors that are really listening and moving forward with things, but I'll update about that in another post tomorrow. It's too much to include here.

To my other babies, I'm sorry. I know how stressful this is for you. This one, especially, had a really hard time knowing that Mom was leaving again with no idea when this will stop. Siblings are the silent heroes, in my opinion. Ones that often feel invisible to others because they deal with less awareness from others regarding their unique pain. But that's a blog post for another time. I see your strength, my little ones (that aren't so little anymore), and I'm so proud to be your mom. ❤️

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