The First ER Visit

First things first: Aislynn is doing well. She is currently enjoying a break from her treatments, after finishing radiation and before her chemo treatments start in a couple of weeks. From what I can tell, both from conversations with and reactions from her doctors and nurses, she is exceeding everyone’s expectations for her recovery. She experienced a complication post-surgery called Posterior Fossa Syndrome. Her medical team did a really wonderful job setting realistic expectations for me as far as what her recovery would look like and she has absolutely blown those expectations out of the water. I’ll definitely be getting more into our experience with it down the road, but for now, she’s getting stronger every single day and her fierce, determined personality has shone through brighter than ever these past three months.

SO – How did we end up here?

For months before her first visible symptoms, Aislynn had been complaining about frequent stomach aches. We had gone to the doctor several times looking for some answers – We tried low-FODMAP foods and a dairy-free diet. Nothing seemed to have any significant impact. I asked about celiac testing and was told that her symptoms didn’t quite fit.

On Monday, April 29, I got a call from Aislynn’s school around 10AM. She had thrown up and I needed to come get her. I packed up my stuff at work and headed to the school, expecting to pick up my little girl for an afternoon of naps and snuggles. When I got to the school however, sick Aislynn was nowhere to be found. My girl bounced out of the office at the school and the school nurse gave me a bit of an apologetic look – I got the impression that she felt bad sending Aislynn home because she didn’t seem very ill. I had a brief conversation with the nurse about keeping her home until Wednesday to allow for a full 24 hours without throwing up and we headed home.

For the rest of that day and all of the next day, Aislynn was completely herself. She played, she laughed, she fought with her brother – On Tuesday, she came to my office with me (I asked my team if they were comfortable with her coming in since I was pretty sure she wasn’t sick) and she played with our office dogs, Honey and Dixie. It was business as usual and I was assuming she had just eaten something that upset her stomach.

Wednesday, she went back to school – She was feeling fine and hadn’t thrown up since the one time she did at school. And then around 12:30PM, shortly after her lunch period, I got a call from the school again. Aislynn has thrown up again and I needed to come get her. I remember the woman from the school who called me saying that she must not have gotten the stomach flu completely out of her system. I expressed how strange that was and probably over-emphasized how not sick she had been – I’ve always tried to air on the side of caution when it comes to sending my kids to school if they are potentially sick because I never want to make someone else’s family sick just so that I can go to work, especially because I can work from home. I packed up my things again and headed back to the school to pick Aislynn up. This time, the principal was with her when I picked her up – Aislynn was dancing and being goofy for her principal, clearly enjoying the audience and making her laugh. I (again) expressed to the principal how strange this was since Aislynn hadn’t gotten sick after Monday morning and had been behaving totally fine. I also had a brief chat with the nurse again and we talked about maybe getting Aislynn checked for some sort of food sensitivity that could be the culprit. She agreed that it didn’t seem like Aislynn was sick, but I also understood that the school has certain rules they need to follow to keep everyone safe, so off we went.

For the rest of the day, Aislynn was completely herself again. That evening was the first time my gut told me that she wasn’t feeling well. Nothing specific happened, I think maybe she just didn’t eat as well as she usually did and her energy seemed a bit lower. Nothing overt, and I chalked it up to her just being tired. She went to bed around her usual time and I didn’t think much more about it.

Thursday came around and we already knew she would be staying home. The morning started out fine – She was low on energy and didn’t seem to be feeling well, but nothing aside from that. As the day progressed, it became obvious that she wasn’t feeling well and she was complaining about her stomach hurting. I remember thinking that it was odd that she would have a stomach bug that caused symptoms on Monday and then nothing else until Thursday.

Later that afternoon, she started throwing up again. She ended up being sick 4 or 5 times that evening and my boyfriend, Nick, and I set up a mattress for her in our room so that she wouldn’t be far away if she got sick that night. Fortunately, she was able to get a good night of sleep, incident free. When she woke up on Friday, I was hoping that I would have my cheerful girl back and that she would have kicked (what I thought was) the stomach flu. Instead, she woke up not feeling well – She stayed in bed and watched some shows on her phone and napped on and off throughout the morning. Around late morning, she started throwing up again. This continued through the afternoon and around mid-afternoon, she was even throwing up the sips of water I was trying to get into her. That was when I really started to get worried and decided to take her to the ER. She had started to get very lethargic and I was concerned about dehydration.

We were seen relatively quickly every time we visited the ER, which was definitely a blessing. We were brought to an available room to get comfy and the nurses and staff were wonderful and compassionate. She’s never been officially diagnosed, but I would guess that she suffers from trypanophobia (fear of needles) and I knew she would need IV fluids, so I was mentally preparing myself for the experience. The doctor wanted to run some blood tests in addition to the fluids and a wonderful woman from child-life at the hospital came to assist with the IV placement – Aislynn started to get worked up and then.. Just didn’t. That’s when I knew she was REALLY not feeling well and was out of it. The blood draw and IV placement went surprisingly well and she and I snuggled up to wait.

Her blood work came back looking relatively normal, with just a few abnormalities that could be attributed to an infection and dehydration. The doctor ordered an ultrasound so that we could rule out appendicitis. This is one of the vivid memories I have of this visit.

We went down to the ultrasound room – The tech was a woman. The ultrasound images only have her initials on them, but I’d like to find out her name some day, in order to thank her because I’m sure she has no idea how much our conversation stayed with me. While she performed Aislynn’s ultrasound (which she explained incredibly well, so Aislynn wasn’t nervous at all!) she and I talked about Aislynn’s frequent stomach aches. We talked about her symptoms that week and how I felt like it was a progression of her stomach aches, but I kept being told that frequent stomach aches were just a normal kid thing. I talked about how maybe now someone would listen since she was actually throwing up and that didn’t seem normal – But I was worried because all of the tests were coming back normal and I felt like we were just going to be told that her frequent discomfort was just “normal.” And what she told me next is a moment that has stayed with me. I had heard it a thousand different ways from a thousand different people, but for some reason, this moment stuck. She told me that mom’s know their kids better than anyone else and if I felt like something wasn’t right, that I should keep pushing until I got answers.

It seems like such a simple thing to say. And it was amazingly impactful. I think that may have been the first moment where I felt seen – Where it felt like someone believed me when I said that something was off, even though I couldn’t say what it was or why I felt that way. Maybe frequent stomach aches ARE normal for kids. But all I knew was that MY kid was getting them and “this is normal” wasn’t good enough. I couldn’t imagine looking my daughter in the eyes and telling her that her almost daily discomfort was “normal” and that was just what life looked like for her. I don’t know that I realized it at the time, but I think that is the moment I resolved to keep pushing until Aislynn wasn’t getting the stomach aches constantly anymore.

The rest of the ER visit is kind of a blur – All of the tests came back normal. Her blood work looked good. The urine sample was clean. The ultrasound was negative. The only thing was that she WAS fairly dehydrated, so we ended up being admitted to the hospital overnight so that they could keep her on fluids. Those fluids made a WORLD of difference very quickly – She started to perk up shortly after they started and she just continued to improve. Between the fluids, the anti-nausea meds and a good night of sleep, she was back to herself on Saturday morning. I would even go as far as to say that she ENJOYED her stay at the hospital – The nurses and staff loved her and she loved the attention. Unlimited popsicles, “room service” and a TV in her room were all perks that she thoroughly enjoyed.

We were discharged that afternoon and headed home with a diagnosis of Acute Gastroenteritis. This is the first moment that I wish I had handled differently. I wish I had pushed back on the diagnosis. It didn’t feel right – But how do you argue with a doctor, who has YEARS of education and experience, that a diagnosis doesn’t “feel” right? I didn’t have any evidence or particular reason – The presentation of her symptoms just didn’t seem to fit quite right. I have never seen gastroenteritis present with intermittent vomiting over a few days (with episodes spaced out by over 24 hours) that then drastically picked up in intensity and frequency, eventually resulting in dehydration. The IV fluids DID seem to help though, and the explanation of the blood work and other testing they had done made sense and lined up with what I could find online. And so I accepted the diagnosis and headed home with my perky, mischievous little girl, thinking that all was normal.