Goodness, it's been interesting around here! This is gonna be kind of long - my apologies in advance. First off, the good: Oliver had a great appointment at Shr*iner’s Hospital a couple of weeks ago. His x-ray is still unchanged, which has been a happy surprise, and means one of two things: #1: He has somewhat asymmetrical ossification of his hip bones (which looks just like early Perthes on an x-ray and would make that very likely in combination with hip pain) combined with recurring transient synovitis, a painful occasional condition in one of both hips that happens for some kids after colds. It’s fairly common, and harmless in the long-term, and he’d grow out of it in a few years. His most significant pain has come after colds, so that points in that direction, and it would also explain the episode of pain in the other hip. However, he had no pain after his recent cold. Or #2: He does have Perthes, but an extremely mild course of it that is unlikely, at this point, to get significantly worse.
Either possibility is much better than the scenarios we’d been given to expect since his diagnosis – he’s surprised the docs, but in a good way. Someone asked me if I was “mad at the misdiagnosis” –but let me be clear: we don’t at all feel that he’s gotten anything less than the best care he could have – his progression has just not been typical. Thank goodness for that! Both the Gill*ette doctor and the Shrin*ers doc had the same opinion and feel he does need to refrain from high-impact activities for now. The wheelchair is going back to the supply company, and he can walk as long as he wants now – so traveling, summer hiking and camping seem to be in the offing again. He will need continued monitoring and does still have pain here and there – but that’s it for limitations. He can swim, CC-ski (if we ever get snow!), climb, and many other things all he wants. So hooray! When we get the final go-ahead for him to run, we want to have a “running party” in the park to celebrate, and hope you'll come if you're close by.
Unfortunately, x-rays aren’t the only thing that has surprised doctors about his little body lately. The day after the Shri*ner’s appointment, Joel took him to the doctor for wheezing, and she put him on prednisone. This isn’t so unusual for our Mr. McWheezy once a winter or so – he does have asthma – but he was worse the next day. His (extremely experienced) pediatrician was rather floored by how low his oxygen sats were – most kids would be audibly wheezing and have chest retractions with O2 at 86/87, and she gave him an emergency neb treatment and sent us on down to the hospital a couple of miles away. He was within the “call an ambulance” range at that point, but I got him there faster than they would have. He spent the next three nights there, continuing to produce numbers that were much worse than he looked. It was quite honestly, terrifying a couple of times – that first night, after we’d settled into bed after hours in the ER and him getting a full 2 hours of straight albuterol (can you even imagine? I feel all jumpy after one squirt), his O2 dropped to as low as 82 and bounced from 82 to 85 for a full half hour. The whole medical team was called in, ready to intubate, but that only helps to force open the airway, and his wasn’t closed. He was actually moving air, and just lying there sleeping. They turned his oxygen up incredibly high, and were clearly confused as to what was going on – with numbers that low, they said he should have been wide awake, gasping for breath. All I could do was hold his hand and pray.
Thankfully, his numbers did creep back up with the extra oxygen, and while he gave us a couple more little scares here and there, he slowly improved over the next few days. We brought him back to the ER for a check a few hours after going home because he didn’t seem great to us and it’s just so darn hard to tell with him – but he checked out OK. He’s back in school, was at first still getting albuterol every 4 hours, but now he's doing fine on just his daily preventative inhaler.
It's scary, though, knowing that the typical checklists that keep most kids safe won't do that for your child. His doc said that had we called the nurse line rather than bring him in, that might have been a fatal mistake, because he wouldn't have shown us any of the red flags they look for, and they would have told us he was fine to stay home. This is not my first rodeo with this child - I've been well aware for some time that he can be much worse off than he looks. I can take the annoyed looks by urgent care doctors when they tell me I don't need to bring him in for a cold. I hit us rather hard, this time, though, that Oliver’s had a lot of bumps in the road in his short life. We just want the kid to catch a break for a little while! What a winter – not that we ever for a moment resent caring for him, but it’s been emotional, logistically demanding, and exhausting.
One, or two, or even three, you can kind of absorb and move on from after the crisis has passed, but man, significant medical care is, frankly, one of the defining elements of his childhood. That’s now how we’d like to view it, but I think that it’s a reality we need to understand and accept in order to fully support him. He had a rocky beginning, a very serious case of sepsis at 6 months that could have killed him had he gotten antibiotics any later, several episodes of significant asthma needing ER care or hospitalization, a tonsillectomy combined with the flu that required almost a full month before he truly recovered, Perthes disease (or something), and last week’s roller coaster. It’s been tough –we love him so very much, and while I never think it’s a good idea for a parent to insist on protecting a child from every adversity, we just want things to be a bit easier for him for a good length of time. I think it affects Noah too – he worries in his own somewhat private way, and I’m not thrilled that he sees this kind of thing as almost routine at this point.
Thankfully, Noah is really thriving in school and life right now – so is able to roll with things pretty well. But it is what it is – we do the very best we can to prevent health problems, but we don’t really control these things. I think it’s important to treat children as resilient people, capable of handling challenges. I try to draw on that when interacting with Oliver and resist this overwhelming sense of how vulnerable he can be, because it’s important that he doesn’t just see himself as “the kid with all the medical issues”.
On the advice of someone I know who has dealt with many medical issues with her child; I try to emphasize how he overcame his challenges or how he was helped by others with them more than the challenges themselves, in addition to emphasizing their temporary nature. I also try to find him ways he can feel good in his body – being outside, swimming, and such. I can’t wait until we can get back to all that – spring can be the worst time for pollution, and pollution is one of his big triggers. I feel badly about that, raising him in a metroplitan area that has high-pollution days. We did purchase a really good HEPA filter for the house to try and minimize that, and I get daily pollution counts from the web, as does the school nurse.
I know others deal with far worse. We do have a lot of loving support from family, church, and friends, and that makes things immeasurably easier. His class was so sweet –they sent a big card, and his teacher said a few were really very worried, and needed some reassuring, so she checked in with us regularly so she could update them. That kind of broke my heart – perhaps some have dealt with losing a relative in the hospital or something. We have a good plan to prevent asthma exacerbations more aggressively, and see his awesome ped again on next week – the one who knows that with this kid, you really have to go by the numbers. We are to get a :sat check” with every cold, and may eventually end up with a pulse-oxometer at home. I try to remember that his medical issues aren’t permanent (though mild asthma might well be here to stay at this point, it really should get better eventually, as the worst years are usually 6-8) and there is good reason to hope that Oliver will grow up to be a healthy, thriving, deep- breathing, running young man and still have that beautiful smile of his, as will his brother. Let's just pray that the excitement is over for the winter.
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