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Sunday April 12 (Easter)

Thanks for all the Easter messages <3 I hope everyone has had a good day.


Our first holiday without Julia was about as expected. We're doing OK, but thoughts of "Julia should be here" pop up randomly. Most often when it comes to Gabriel. Like today when he was playing in his sandbox and doing his Easter egg hunt. If things were right in the world, he'd have his big sister pestering him. But everyone is doing OK, considering. We talk about Julia a lot, and all the sweet things she did <3


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Shortly after we came home from the hospital, Reed got sick with something. He said it felt like a cold, but he had a persistent fever. At the time, coronavirus testing was reserved for fever + shortness of breath, so he didn't qualify. It lasted about 2 weeks and then he got better. But near the end of his illness, I got sick with a sore throat and stuffy nose as well. By now we hadn't left the house in at least two weeks, so I assumed I just caught his cold.

Then I lost my sense of smell and taste. Then I got pink eye. So of course I completely freaked out (because that's what I do). Then last Sunday I tried to get some sleep and put ear plugs in, and with my first breath I heard some sort of weird crackling down in my lungs. It sounded like logs in a fire. When I woke up it felt like there was a band around my chest and breathing was difficult. So I freaked out some more. It came with a severe cough, right about the time I expected to be recovering from my cold. I called my doctor and we agreed it sounds like pneumonia, despite no fever.

They prescribed antibiotics just in case it was bacterial, even though we suspected viral. I completed the course with no improvement. When things got worse, they prescribed an inhaler. I've never used one before, and it makes my heart race, so that's fun. I've not gone in for a chest x-ray mostly because I know nothing can be done about it unless I actually need to be in the hospital, so there's no way I'm exposing myself to germs... or others to my germs.

So this past week has been absolutely awful. I feel like there is something squeezing my lungs. Breathing is hard. I get sharp pains all over my chest and back randomly, not necessarily aligned with breathing. My upper back aches at a 7/10 constantly, with mild relief from painkillers and a heating pad. I'm out of breath if I talk and certainly if I move. And so much coughing. I could totally deal with it if the pain wasn't centered around a vital organ.


I take my temperature constantly (so far none), and I have a pulse-ox that has stayed at 97+ except first thing in the morning it's lower, ~95. I learned a lot with Julia about how to assess respiratory status, so I try to apply that even when my anxiety has the better of me (which is pretty much all the time).


I did call my doctor a few days ago around 2am when things were especially bad, and he recommended half an Ativan (not my full dose since it can slow breathing), Motrin for inflammation, and a hot shower. After about 45 minutes, I felt I was able to breathe slightly better. So I was happy that that med + hot shower combo worked. I was looking forward to doing it the next day and our hot water tank broke. Seriously. Because that's my luck. Luckily someone came out and fixed it the very next morning (for $1000), so I didn't have to go more than a night without that assistance.


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So, that's where we stand. Reed has recovered, I have not. We have no idea if it's coronavirus, though it's hard to really believe it's anything else. However, my obsessive Googling (and trust me, it's been obsessive), might point more toward bronchitis than pneumonia. I've never had either. And I read that bronchitis can also cause this shortness-of-breath / productive cough / upper back pain / chest tightness. Although that seems to come with a rattle/wheeze sound rather than a crackling sound... so that's what holds on to my nerves. And it did come after (we assume) a cold, which seems to be standard. And it often has no fever, which I don't have...


It's certainly bad enough that were we not in the middle of a pandemic, I would have absolutely been to the hospital already. Knowing that it's not necessarily safe to go there now is a huge added stress. But I'm avoiding it at all costs. If my body is struggling to fight off a cold, I definitely can't afford to catch anything else.

I want to HESITANTLY say that today wasn't worse than yesterday, as far as breathing goes, which would have been the first steady in a week (several weeks since the 'cold' started). It's not better - everything is still tight and it hurts, and I'm aware of my breathing effort constantly, but I'm hoping I might be at the worst right now and things will improve from here.

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Right now Gabriel is asking Reed to "Go outside for Easter hunt?" even though it's night time. He had a lot of fun today. We didn't have an Easter basket, but Julia had some basket / bathroom organization thing that did the trick. There was candy in all his eggs, and then a big pink squishy dinosaur in the golden egg. We had a nice Easter breakfast. And for our Easter dinner Reed says he's doing hot dogs. I haven't had an appetite since this all started, but maybe I can have one fancy Easter hot dog =) And Gabriel has had "last chocolate?" like, 50x today.


Gabriel has been making great use of Julia's iPad. He's now an expert. He knows how to get to all the cartoons and has found lots of fun games. While Julia loved a variety of daytime soaps, Gabriel is only interested in Paw Patrol. And he knows how to find the pictures of Julia on it and he pulls those up a lot. He always says "G is for Gabriel and J is for Julia".


But he is doing just fine with the life transition. He was only 11 months old when his sister left the house, so he's not missing her like a typical sibling might be, just with his young age, her length of hospital stay, and their separate living arrangements. He's very happy to run around and make a mess, and cuddle mommy and daddy. Lots and lots of cuddles. And 2am bedtimes.

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So, hopefully I start feeling better in the next few days, because I'm about maxed out on stress+stress+stress. I think I'll go through all our Easter pictures and put some up in an album to share <3




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!