Another Mystery, Another Stone Turned

Having been through a terrifying delivery and subsequent surgeries for my son at the beginning moments of his life have given me a pretty good “don’t sweat the small stuff” mentality to parenting. Most things pale in comparison. When Finn has a cold or goes through bouts of fevered teething I’d like to say I handle it pretty well for a first-time mom. So when Finn was turning 10 months old and got sick, I at first thought nothing much of it — it was just more of the “small stuff.” He was fussy and spitting up a bit more than usual, and wasn’t eating as much as he usually did. His eyes were red and a bit watery, but this wasn’t unusual. (Since Finn’s surgeries, we were still applying a pretty frequent regimen of eye drops to help prevent infection. It wasn’t all the time, but occasionally he would exhibit some redness or irritation in one or both eyes and we’d administer a week or two of prescription drops until it subsided, which it always did.) I checked his temperature frequently and there was no fever so I assumed he might be teething again or just have a stomach bug that would quickly pass. Unfortunately, I was wrong.

After a couple of days, Finn started vomiting everything he ate or drank and he was becoming increasingly lethargic. I was used to spit up, of course, but this was full-fledged projectile vomiting multiple times a day. We called the pediatrician and took him in immediately. Our pediatrician did an exam and said it was likely a virus that many kids were coming in with, but he did point out that it was odd that Finn had no fever or diarrhea, which was the case with most of the other children with the virus. He sent us home and told us it should clear up in a few days and to try to get Finn to take in as many fluids as possible, but if it were to get worse at all, to call him after hours. The next day, Patrick was heading out of town for a separate family health emergency in California. Despite the terrible timing, I urged him to go ahead with his trip believing it was just a virus and would clear up. He hesitated, but proceeded with his trip. Later that day, the vomiting got worse and Finn was so lethargic that he was sleeping in my arms all day long. He could barely lift his head and was completely lifeless. Panic started to set in. I called the after hours number for our pediatrician and the on-call nurse suggested I go straight to the ER. This was the first time I’d been to the ER with my son and though I was still somewhat calm on the outside, I was terrified on the inside. I was instantly transported back to the fear and panic I felt in those earlier moments of Finn’s life.

Upon entering the room, Finn vomited all over the floor and me. I gave the staff his medical history (blindness and surgeries included for what it was worth) as well as a debrief of all of the symptoms he’d been having that week and our visit to the pediatrician. They immediately took blood (my least favorite thing to watch him endure, but he was so lethargic he barely flinched this time) and took it to run tests. They then did an ultrasound on his bowels to see if there was an obstruction of some sort. Finally, they did X-rays on his stomach, mentioning something called stenosis (a narrow or blocked channel between the stomach and the gut), which could only be cured by surgery. The word surgery fell heavy on my mind and heart — the panic increased. Please let it be something more easily fixed I silently begged. After an hour or so, they came back and said all the tests came back normal — they ruled out appendicitis, infection and thankfully, stenosis. They administered anti-nausea medicine and made me wait a half hour to see if Finn could hold down Pedialyte. He did. I was relieved. They monitored him for a while longer, taking his vitals and making sure the vomiting had stopped. After a few hours they ruled it likely a virus, though again, they said the same thing our pediatrician had said — that it was odd that there was no fever or diarrhea accompanying his other symptoms. Yet once again, no true diagnosis  — Finn was a unique case. (I was beginning to feel like my child would never fit any of the normal symptoms for anything and would always be a medical mystery.) They sent us home with a prescription for the anti-nausea meds and told me to follow-up with the pediatrician. I took him in the next day – at this point Finn was still lethargic and not eating solid foods, but was vomiting less and holding down fluids. The pediatrician examined Finn again and said it was basically a wait until it passes game at this point. He didn’t seem to love the anti-nausea medication for a baby so young, but agreed it seemed to be helping so he suggested we use it only as long as we had to and to follow-up with him again in a couple of days.  This had been a full week now.

As I sat at home that evening I felt completely helpless once again as Finn’s mom. As you know from my other blog posts, when I feel helpless, I’m a leave no stone unturned kind of person – at least I’d turned into one when I became Finn’s mom. The mention of the oddness of no fever or diarrhea from multiple medical professionals kept playing over and over in my mind. Virus didn’t appear to be a perfect fit and so for me, it just didn’t sit right. I got a strange hunch in my gut that told me to reach out to Dr. S, Finn’s eye surgeon. He’d given me his cell phone number from the first time we’d met with him and I’d used it only a few times before – mostly follow-up questions regarding Finn’s healing after surgery and maybe once to gloat after my UNC Tar Heels had beaten his Duke Blue Devils in a high-stakes basketball game (the rivalry of our competing alma maters was always a well-appreciated ice breaker during our appointments with him). It had been a while since I’d had to use that number, but I was at a loss after seeing every other doctor I could think of and yet, still sat with a limp, rag doll son in my arms. It was late, but I sent the text — I reminded Dr. S of who I was and explained briefly what was going on. Within minutes my phone rang and he was asking me for more details. He told me to bring Finn in at 7am the following morning and he’d take a look. The next day I arrived downtown with Finn at Dr. S’s office promptly at 7am. After a quick examination, Dr. S knew exactly what was wrong.  It turned out that Finn had some bleeding behind his right eye that had created eye pressure so high he’d been having severe migraines which caused all the vomiting. I couldn’t believe it. I was so thankful yet again for this doctor coming into our lives and having some answers. At the same time, I was riddled with guilt once again — the thought that my infant son had been enduring such severe headache pain for a week that he was continually vomiting broke my heart and was a punch to the gut. Why hadn’t I thought of his eyes sooner???

Elevated eye pressure often accompanies eye conditions such as glaucoma, but Finn had never exhibited any issues with pressure thus far — and since he doesn’t have a diagnosis it wasn’t something we were on the lookout for. As with so many things, it was a case of you don’t know until it presents itself. Dr. S sent us home with three eye drop prescriptions to be given several times a day and instructions to keep Finn upright until the symptoms subsided. This is a lot harder than it sounds — I attempted to get him to sleep in his car seat or stroller at night or for naps, but of course that would only last so long so I ended up sleeping with him in a chair, both of us sitting upright for several days. Dr. S said within a day or two we should see progress and he was exactly right. Within a couple of days my pitiful little baby was coming back to life, regaining his appetite and no longer needing the nausea medication given at the ER. Of course I was still kicking myself for taking so long to realize his eye was involved and causing the other symptoms, but I reminded myself that neither Finn’s pediatrician nor the ER doctors ever said or thought this had anything to do with his eyes either, despite knowing the full history or that his eyes were a bit red and watery. We had another follow-up with Finn’s pediatrician a few days later and after telling him what transpired, he said to me, “I feel so helpless when it comes to your son and I’m so sorry.” I replied, “Don’t worry, I feel the exact same way.”

The fact is, babies who are born completely blind are extremely atypical. I’ve tried to find statistics on exactly how many, but there really aren’t any statistics that can tell me how many Finns there are in the world. The statistics lump together “legally blind” with “completely blind” and those “born blind” with those who “become blind” and then those who have a clearly diagnosed condition have their own statistics. So, I guess that tells me just how rare Finn is. When a 10 month old comes into the pediatrician’s office or ER with vomiting and diminished appetite, 99 times out of 100 it will be a virus or a food allergy or something else common. What are the chances that it’s eye pressure causing a migraine? Pretty damn slim, especially when the child has never shown an eye pressure issue up until that point. Further, neither the ER near us nor our pediatrician’s office are equipped with the tools to check for eye pressure — I’ve since asked.  It’s just not part of their routine scope of work. I’d texted my doctor and nurse friends during all of this, and even mentioned Finn’s eye being red and watery, but no one until Dr. S, who is trained specifically in the eye issues Finn has, realized what was actually going on. So I don’t fault Finn’s pediatrician or the ER staff or even myself (for the most part), though I’ll admit it annoys me that my son’s symptoms were such a rare case that even our ER would have had to refer us elsewhere to have his eye pressure checked. Finn is unique little boy growing up in a world where we’re all trained to fit everything into typical boxes.

This terrifying episode was yet another lesson for me as Finn’s mom. I learned that sure, my son at times will check all the typical boxes that other children do – like when he spikes a fever while teething or battles an ear infection, but I also know I can’t let my guard down. I have to always ask myself, is this typical kid stuff or is this something related to his very atypical eyes? Of course, now that eye pressure has presented itself, though thankfully it hasn’t since, I’ll know what to do if there’s a next time and I’ll act faster. But I now sit and wonder, what other things haven’t presented themself yet? It’s a scary thought and all I can do is follow that hunch in my gut when things just don’t seem right. If doctors are saying “it appears to be this, but doesn’t quite fit” I know it’s time to start turning over more stones.

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Just before heading to the ER
My poor baby in pain
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Checked into the ER
Waiting for test results

5 thoughts on “Another Mystery, Another Stone Turned

  1. Alison, Another beautiful addition to Finn’s story. I remember because Patrick was coming to be with me for chemotherapy. You continue to inspire us all. Love Dottie

    Sent from my iPad

    >

    Liked by 1 person

  2. I had not known of this traumatic time for all of you until reading this. Your feelings and all the details are so well expressed in this blog, Alison. And I agree with all the previous comments…you are an All Star Mom! I love the recent video of Finn laughing at the sounds he was hearing! He is a precious little boy with awesome parents!

    Liked by 1 person

  3. Alison. I plan to read your entire blog. I’d started out but got distracted. You are an AWESOME MOM. Don’t underestimate yourself. You are doing a fantastic job!!! You’re both terrific parents. Congratulations on your new baby girl.

    Liked by 1 person

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