Thank you so much for the kind words and encouragement on Friday. Each comment and e-mail felt like a warm hug.
We had a very long (almost 2 hours!) and thorough appointment with a wonderful gastroenterologist. Test results remain reassuring; based on some relevant markers it appears to be a virally induced response (probably his 48-hour flu bug back in November). The solution?
Time.
It could take weeks – or months – for his body to fully heal.
That said, we walked out of the appointment with a game plan (including some at-home supports aimed specifically at children with chronic abdominal pain/nausea). We’ve also been brainstorming how to best support each other as a family, and have lots of great ideas – many coming from the kids!
I’m not going to lie. Nights are still very bleak. But we’re working on those, too. As Nicole so wisely said: There will be a time after this.
Indeed there will be a time after this; in the meantime, while I’m in this time – with its worry and frustration and lack of sleep – thanks for coming alongside and offering support.
Header photo by Manuel Cosentino on Unsplash
Oh goodness, I am so glad that you have some answers and a plan at least.
I had a similar experience recently…loss of balance due to residual effects of jet lag and the resulting lack of sleep. I was told it could take a few weeks to several months to recover. Here I am, almost 5 months later, and I am about 95% better. But it’s been slow and frustrating. Hang in there! I hope that the remedies that you have, and the plan for support, will help his healing. I’m hoping that having your family nearby can offer you some respite, knowing that this could be a slow process.
You have had a long haul with that (and then the related complications with the fall). I’m so glad you’re on the mend, but how frustrating it has taken that long!
We’re so thankful to have family handy this winter and now that we have a clearer picture of what’s ahead, it’s easier to plan and ask for help accordingly!
I am so glad you got to see the children’s gastroenterologist on Friday and left with some answers and a plan in hand. It’s frustrating to know that it will take the gut some time to heal but hopefully you’ll be moving in the right direction now.
Yes! I’ve always been hoping for a “smoking gun” where we can find a definitive and specific issue and a definitive and specific solution. But, so much to be grateful for and given time, this too shall pass!
glad to know the issue is getting resolved and you have a game plan. knowing what it is is a first step toward finding a solution. at least you know what you are dealing with.
Thanks, Coco. And yes, it’s so much easier to handle things mentally when we have managed to rule out some major medical issues!
Weeks or months, oof. Well, that’s frustrating BUT great to have an answer at least. Viral induced, I mean, what can you do other than wait it out? I’m glad you’re figuring out ways to get through this difficult time! We are all here to support you, Elisabeth. I hope you can figure nights out too and get some rest. You’ll get through this, but you poor thing, you must be absolutely exhausted.
Yes, I don’t love the idea of months obviously, but maybe it will be weeks?! He is already 2 months in and it is helpful to know we continue to rule out major issues. While there is no closure on it yet, having a game plan helps me feel more in control of things mentally.
Last night was so much better. We have a series of things in place to help him self-soothe back to sleep because, for now at least, it seems night wakings are going to be inevitable. He WAS awake, but he stayed in his room until morning and managed a whole day of school today. This is HUGE. I know we got to this point before in early January and then he relapsed so I’m still always so cautious in “celebrating”, but slowly but surely…we’ll get there!
Oh. Oh, Elisabeth. So, so many big hugs, my friend.
How I wish there had been a “THIS is what it is and THIS is the best treatment and THIS Is when he will feel better” diagnosis.
But. You have a plan. And while time is the main tincture, apparently, time will heal.
You have a gastroenterologist at one of the best children’s hospitals in the world.
And, it sounds like you have support. Yes? Have they connected you with someone (social worker, counselor, nurse practitioner/nurse, someone) who can help your family navigate this? (Not required but would be oh-so-nice to have someone on speed dial…particularly when you are in the throes of parenting alone with a kid who has a lingering illness.)
I hope your weekend brought rest and maybe a few bits of healing for Levi.
I hope that you can see a glimmer of light at the end of the long tunnel you have been in.
I will be, as always, keeping you all in my thoughts. And when Levi is feeling better, I will be sending a large bag of those dried cranberries just for him. <3 (And, um, maybe a big can of those nuts for you…)
Another hug, my friend.
I love this comment so much. Yes, someone on speed dial would be very helpful.
I was thinking about your sleep, E, and wondering if you ever have the chance to nap? I know you work, I believe from home…if your parents could come over and be with Levi, and you could lay down for an hour? Or longer if you work part time? Or take an hour or two of sick pay? Just thinking about the cumulative stress of not sleeping, and possible solutions to get you through…
I did nap yesterday and it was great. I’m not usually good about napping, but I’ve taken 3-4 naps in January out of necessity and they have been so restorative.
I do work from home, so I can nap during the day but I find it hard to turn my brain off and relax enough to sleep, especially if other people are over. I sleep with one eye/ear open sort of thing and can end up feeling more anxious, ironically. The biggest solution for me is going to bed earlier and I’m not always good about that either. I’ll get the kids to bed and should turn out my own light, but then spend time unwinding which is nice…but not as nice as waking rested.
I have to say, though, between the 1.5 hour nap yesterday and a solid night last night I feel so much better in terms of energy. I have a sleep debt from December/January for sure, but it feels hopeful to know I can get some concentrated catch-up now that John is home.
Thanks, Anne!
Yes, a plan is definitely very helpful for me (and Levi). We have various levels of support at the school, and our own family doctor is wonderful (plus, we can call the gastroenterologist at any point if things decline again).
The weekend was exhausting (mostly because of so much disturbed sleep)…BUT today went well and he stayed in his room all night last night and felt up to doing a complete day at school). So lots of glimmers of light. We’ll get to the end of the tunnel eventually.
Thanks for all the well-wishes and e-mails and regular check-ins, Anne! It means a lot <3
Well, I’m glad it’s nothing more serious. Knowing that will probably make it a little easier to deal with. I feel bad for Levi, but at least he’s the only one who got it! I hope you’re able to get a little more sleep soon- life is just so hard to cope with when you’re constantly tired. Hang in there.
What a good point – while it’s hard to watch him going through such a tough time (and as a parent it impacts my own life dramatically) this would feel IMPOSSIBLE if we were all sick with the same thing.
We’re hanging in and today was the best day in well over a week, so that feels optimistic. I have to celebrate every good day that comes along and when a day goes badly (which I know is inevitable) at least now we have a “game plan”!
I am glad it isn’t something serious/concerning and that you had such a thorough appt w/ a specialist. But ugh – time is a tough solution… I hope the solutions they came up with to make things more tolerable work for you. Stomach issues are especially awful because, in my experience, they can start to be almost psychosomatic? I had a horrible teacher in 4th grade – I think I mentioned him in a comment. He tipped my desk over with me sitting in it. Anyways, after that I horrible anxiety that would present at nausea/vomiting. And then I kind of got in a pattern of always feeling nausea/fearing I would throw up. I should have been in therapy but that wasn’t a thing back then. But I hope you guys can break this cycle and get Levi feeling better. It’s just such a horrible feeling to be nauseated and fear you will throw up. My heart goes out to you guys!!
First, your grade 4 teacher sounds HORRIBLE. I’m so sorry you had to go through that, Lisa. Ugh.
Yes, there is definitely a psychosomatic compounding issue now. It has been such a long haul for him, so anxiety over feeling nauseous…brings on nausea. We’re working on both the strict pain management and coping mechanisms for the mental battle of dealing with a chronic issue. The gastroenterologist pointed us in the direction of audio supports that are really great. And having a clear plan: he’s the routine we’ll do at bedtime to help you ease into sleep, here’s what to do when you wake up in the night, here’s what you can do when you feel unwell at school. Also, his teacher is SO supportive, so we have a game plan for helping him stretch out those days at school so he feels confident.
We eventually go similar news about Harry’s heart episodes. And! While thankfully in both cases, it is noting more serious, TIME is also… a hard solution. Hang in there.
Time is a hard solution (and patience isn’t my best quality) but we’re taking things one day at a time…and today was a good day! And that’s what I have to focus on for now and then tomorrow…well, we’ll tackle that tomorrow!
I’m glad to hear that the tests were all clear. It’s so hard, though when your kids are in pain. I’ve prayed for a speedy recovery, and patience for everyone, and that you’ll get some sleep.
Thanks, Melissa <3
At least there is a game plan that gives you back some control. Hang in there.
Thanks, Tobia <3
I am so, so glad you guys have a plan and that all major issues have been ruled out. I know it’s frustrating to know this could be more weeks or months of Levi not feeling his best (not to mention the toll it takes on you!), but I hope he’s on the tail end of this sickness since it HAS been two months already. <3
Thanks, Stephany. I feel like we’re making slow and steady progress. And while we’ve been here before…and then he regressed…I feel more confident we’re not missing a major condition that requires interventions (i.e. surgery). Getting sleep more consistently is the biggest boost to my mental health right now! It makes such a difference.