An update on Edward. Let’s see. When last we spoke, he was feeling somewhat better, his fever was more manageable, he was eating cinnamon toast, we still didn’t have his PRC Covid test back, but we had done a rapid test and it was negative. So things looked like this:
Thursday: woke up with fever; took PCR test that afternoon
Friday: fever
Saturday: fever; negative rapid Covid test; PCR test results overdue
So now here are the updates:
Sunday: fever; still no PCR test results
Monday: fever; PCR test negative
I took him to the pediatrician Monday early afternoon. She did another rapid Covid test, which was negative. She did a flu test, which was negative. She did a strep test, which was negative. I appreciated the way she then looked at him: almost fiercely, like she was GOING TO FIND OUT what was wrong with this child. She sent us to the reasonably-nearby hospital (30 minutes away) to get bloodwork and a just-in-case chest x-ray; there is a lab/x-ray in the same building with the pediatrician, but it won’t do stat results, and she wanted stat results. This was the first time I’ve heard a doctor ask for stat results, and it sure pushed us to the front of every line, so they must not use it very often. Less than an hour after we were home from the hospital, the pediatrician had the results of the bloodwork and the x-ray, and she had a diagnosis for us: pneumonia in one lung.
I am only slightly familiar with pneumonia. I had it myself as a young child, an event I barely remember, and only in little child-memory snippets (feeling too sick to keep my eyes open for the pediatric “Welcome to the Hospital!” video; pink medicine in a plastic cup; Jell-o and popsicles; my beloved BABYSITTER!! VISITED ME!! AND BROUGHT ME A STUFFED ANIMAL!!! And I had “walking pneumonia” a couple of times as an adult, but my impression is that that’s not the same as pneumonia? or something? I could look it up, I suppose. *lazy hand-wave* And my mom has had pneumonia (the diagnosed-in-the-ER kind, not the walking kind) several times.
What I thought I knew about pneumonia is that it starts with a cold or other illness, which then goes on for a long time until it turns into pneumonia. Again, I could look it up, but ehhhhhh. In Edward’s case, though, he had fever first, then more fever, then gradually developed a light cough, which then turned into a steadier more bothersome light cough. So what I am wondering is if this pneumonia is instead related to the surgery he had the day before Thanksgiving, when they used a breathing tube. Could pneumonia end up in the lungs that way? Should I look it up? I definitely should, but right now I am so wiped out. This morning I need to call his Crohn’s doctor and give them the update, and see about rescheduling his postponed Remicade infusion (and this means he’ll miss ANOTHER day of school, when he has already missed at least four). Also we got a letter from our insurance company saying they will no longer cover Remicade as of next month, and I need to panic about that, but I don’t have time right now, so I hope the doctor is already taking care of it, as I’m sure his office also got a letter, and in the past his office has been very, very, VERY good about handling insurance issues, generally taking care of them completely before I even KNOW about them. (Super, super annoyingly, the letter from the insurance company was DATED November 8th, but actually ARRIVED December 4th, which, come on.) I need to call the school to give them the update on Edward. I need to remember to call the pediatrician, who wants to see Edward back on Wednesday if he still has a fever by the end of today, or Thursday/Friday if it goes away. I need to go pick up a UPS package, which needs a signature and they tried to deliver it twice, including once when Paul was home but had his headphones on; the UPS guy tried the doorbell for like 4-5 minutes, so he really gave it his best shot and I am only glad he doesn’t have to keep coming back again and again when I am just never home at the time he gets here. I’m so annoyed (at Paul, at the situation/timing, at the business who sent it signature-required) I could cry. I still need to, like, HANDLE SO MUCH CHRISTMAS. Meanwhile I’m going to have to nag Edward through making up at least 4-5 days’ worth of schoolwork, which he is ALREADY showing bad attitude about. I am getting to the level of Overwhelmed where I am starting to make impulsive decisions to get things out of my realm (throwing away a string of lights when they didn’t immediately work, for example), and I am DEFINITELY in “where possible, use money to buy time” mode. I am also trying not to discuss ANYTHING of ANY importance with ANYONE, because I am in the state of mind where a conversation about maybe dealing with one’s own crumbs on the counter could turn into a conversation about LEAVING AND NEVER COMING BACK.
An update on my Moderna booster shot (after two Pfizer doses). I got it Saturday afternoon at around 2:00. I felt okay all the rest of Saturday, I think; it’s hard to remember. I was very distracted by Edward, and occupied with refreshing my email to see if the PCR tests were back yet.
Saturday night I woke up a couple of times with an “Uh oh, I feel like I’m coming down with something” feeling: slightly sore/gunky throat, slight headache, general unwell feeling. I woke up with those same feelings Sunday morning, but by the time I was out of the shower I felt pretty normal. My arm was kind of sore, but no big deal. Most of the day Sunday I felt normal.
About 24 hours after the booster, though, I started feeling kind of achy and tired. From then until around 8:00 at night, I felt increasingly achy all over, until I felt like I really needed to go lie down; while I was getting ready for bed, I started feeling like my skin was hot, and I got chills and my teeth were chattering; I should have taken my temperature, but I felt too cold and just wanted to get into bed. I went to bed and played games on my phone, and at about 9:30pm I got up to pee and noticed I was now VERY sore all over, and I was freezing/chattering again as soon as I got out of bed, and so I took painkillers and went back to bed; I woke up Monday morning feeling normal.
Monday morning and all of Monday I was extremely busy and distracted with various Edward things; I didn’t feel too unwell to handle it, and I didn’t need painkillers. I had no appetite, though, and found it difficult to eat. This morning, Tuesday, the area around where I got the booster is pink and swollen, though not in a worrisome way, and I still feel relatively normal, but also still non-hungry. I can’t tell if I’m feeling wrung out and tired because I AM wrung out and tired, or if it’s booster-related, but I feel well enough to go to work and cope with things. I feel what I’d EXPECT to feel, normally, in these circumstances, is what I guess I mean.
Proof-reading this, I think it comes across extremely whiny and exhausted and PLEASE PITY ME. And I would not say no to a little pity, but truly this is a VENTING sort of post, where I am unloading all the sad/negative things of the last few days, but ACTUALLY things are good: we have a diagnosis for Edward, and we have antibiotics, and the pediatrician was SO GOOD figuring it out, and she says he will probably feel significantly better today! I can go pick up my UPS package, instead of fretting about what I am supposed to do about no one being home to sign for it! I got my booster, and my body showed an immune response, and that is GOOD, and also it wasn’t a TERRIBLE immune response (it actually felt kind of nice to be snuggled warm in bed, just sick enough to really love being there), just sort of a satisfyingly vigorous one! And I love Christmas and Christmas things, and I even love Christmas busyness, it’s just that I am a little OVER-busy right at this MOMENT—but if all goes as we hope, I am soon going to be spending less time Tending Edward and driving him to appointments, and that time issue is going to clear right up! And yesterday there was no fun Christmas mail, but maybe today there will be some!
Ugh, pneumonia stinks. I hope Edward feels better soon!
What an ordeal!!! So sorry for everything happening but I enjoy your venting, makes me feel better about my own internal monologue! I offer you the appropriate amount of pity ; ). Hope Edward rapidly improves on the antibiotics and that you have no need for another aggravating PCR test anytime soon!
I love the venting too. This is what I try and do with my mom -vent – and it is not well received😞
First of all, I am so sorry any one person has to deal with so much!
IF this is helpful- I am a medical librarian, and I know the amount of information on google for any condition is overwhelming and sometimes inaccurate. Medline Plus is a great resource to quickly find information about a disease, illness, medication, etc. I could go into all the reasons it’s a trustworthy source, but you’re already so busy I don’t want to overwhelm you further. If you decide to research pneumonia, it might be a good place to start! (Also, since you work in a library, if your library doesn’t already send patrons here when they are looking for medical information, it might be a good resource for that as well!)
Best wishes to everyone in your family!
… I have no qualifications whatsoever, but as a consumer also like the Mayo clinic site — I can generally get there by googling “Mayo whatever” (this works for “Mayo pneumonia”) and find it can be useful for getting a quick, informative overview of something I want, well, a quick overview of.
Mayo Clinic is great too! That’s our second go-to. :) Mayo is more of an informational source while Medline works for information AND organization (it provides links to different trusted sites so you can read more if you want to). Both great resources!
Thank you for this tip!
Oops, I commented below but I meant to comment here thanks for the tip I’d never heard of that site.
Glad you got some solutions to the not-so-good things! This is a stressful time of year. (I mean, I always wish Xmas was in January, as in I need a few more weeks to get stuff done. Although if it was in January I’d probably just procrastinate more.) I had a similar reaction to the booster 24 hrs after getting it – chills and achiness for a few hours. Hope Edward feels better ASAP.
Oh, I hope he’s feeling better today! A friend works for CVS corporate and he told me that the labs are completely overwhelmed with PCR testing right now because of travel requirements. I know here in DFW there is an active extortion market with people paying hundreds of dollars for private-pay PCR tests just to move to the front of the line or guarantee a certain timeframe. One more thing we have gotten wrong in the pandemic!!
Also, I really hope someone is working on research about why some people get vaccine side effects and some don’t. I mean, it’s not a priority obv, but that is so interesting to me. I Pfizer/Pfizer/Moderna also!
I had the same reaction from the Moderna booster. I felt like I’d been run over by a truck about 12 hours after the shot. It lasted 12 hours and then I felt normal. I also had redness and swelling at the injection site. It wasn’t painful but took about three weeks to fully go away, so just a heads up on the timeline for that.
I have been so busy worrying about Covid that I forgot about all the other shitty viruses/bacterial infections. Ugh. So glad you have a diagnosis for Edward and can now TREAT him. Everything sounds VERY busy and stressful at the moment, and I hope that the moment is coming to a close.
Your last week sounds absolutely exhausting! You deserve some consoling for sure, and maybe a commitment from Paul to pick up that package since he’s the reason it wasn’t delivered!
I’m feeling you on the kid-missing-school thing: my son has had a headache pretty much since the beginning of September and if he makes it to school more than 2 days a week it’s a major victory. There have been many weeks where he made it only for a day or a half-day. Over the years he’s seen his doctor, a pediatrician, and a pediatric neurologist. He’s had an MRI of his brain that didn’t show any abnormalities. We’ve tried food elimination diets in case it’s related to something he eats. He’s tried 3 different preventative daily drugs with no results. And this was when he was only missing a day or two of school per week, which was his “normal” for the last few years. We took him to a chiropractor for the last couple of months who did some “neurological training”, but still, nada.
At this point I’m hoping that the nosedive into almost constant headache is because of hormones – he’s just starting to hit puberty – and will lessen naturally at some point even if we can’t figure out how to help him. I have a friend who gets botox shots around her scalp for migraine, so I’m also starting to consider that as a possibility.
He does, however, recognize that he has to do his schoolwork to catch up when his headache recedes enough to let him. He doesn’t want to be held back, which he’d have to be if he didn’t do the work at all.
I hope your son’s headaches resolve themselves or you find an effective treatment soon! School can usually wait but (please forgive the unsolicited advice if it is unwelcome) you could look into accommodations available at your school district. It’s rare, in mine but sometimes the board will hire a certified teacher to do housecalls and coordinate with the school’s teachers for a student whose medical condition leads to protracted absences. I had a student with IBS who got this accommodation.
Oh, Swistle. Similar over here.
It’s excellent that you have this place to vent. Good for your mental health, keeps you from defenstrating family members! Good for us, we can commiserate and feel less alone in our own struggles.
Win-win.
I always appreciate the sharing.
Ps- scheduled for moderna on top of pfizer tomorrow so I extra appreciate that info.
It’s funny, I felt like I was almost cheating on some sort of Pfizer Club membership to get the Moderna booster—but there are so many of us, it now feels like it’s just a new club! Pfizer-with-Moderna-Chaser Club!
I’m a Moderna with a Pfizer chaser!
I feel like these two clubs would be buddies.
I think we are very inclusive of those who are vaxed and those vaxed and boosted, regardless of the combination.
Okay that is a lot! Vent away! I wish that when your child was sick enough to stay home from school that the doctor’s office had a main line to the school and could just email a note, with all attendant paperwork. I work in a large school and it’s so, so hard for us as parents to get information in and as administrators to get the info, surely there’s a better way! I had pneumonia as an adult and the one thing I can say is that once those antibiotics kick in, I start to feel better and it’s such a relief. I am thinking good thoughts for you and reminding you that it’s the time of year when we can drink our coffee “holiday style!” :)
Good call!!
YESSSSSS HOLIDAY-STYLE COFFEE
I’m here with all the compassion, friend. It’s a lot. You’re dealing with a lot. As far as the origin of pneumonia, I say don’t go overboard looking for answers. If Edward has to have a breathing tube again in the future you could bring it up and ask about the possibility of connection but for now it’s probably more helpful to be thankful for antibiotics and the fact that he will certainly be feeling better soon. Hang in there and keep venting away, I think it helps us all feel less alone!
I have found this a useful Coping Thought today: that I don’t need to find out HOW he got it. I can take that task right off the To Do List!
That is A LOT.
I have info about pneumonia! It certainly could have come from the breathing tube although you are correct, it is usually from some kind of sickness first. However, the breathing tube could have introduced a bacterial pneumonia. I am so glad he’s got the antibiotics, I’m sure he’ll start feeling better in no time. Very stressful for all involved though.
I hope you get tons of happy Christmas mail today!
I’m glad you have a persistent doctor and a solid diagnosis. Antibiotics are surging into the infection now! Yes! You deserve a nap or a gin or a gin- nap for sure!
I am sending a refreshing dollop of pity and also something nice to buck you up a little in the midst of all this nonsense. I feel as though that’s really Paul’s job, and I am pretty sure he is not going to come through.
Maybe the mail will, though. Come on, mail!
I have had viral pneumonia and mycoplasma/walking pneumonia but never bacterial, and I too thought that was the one that started off as some sort of other respiratory infection and then got worse.
First of all, your insurance company can just fuck right off. What do they even expect you to do with that information??
I’m glad they figured out what is wrong with Edward! When my daughter had pneumonia (she was five, and this was in the Before Times), it took five days and three medical professionals to diagnose, which was maddening. I was more worried then, than when we knew what she had, because diagnosis -> treatment plant -> hope of improvement. And she did indeed start getting better right away on the serious antibiotics that had to stay in the fridge. I hope Edward feels better soon. It sounds like you have a good relationship with his Crohn’s specialists, which is so helpful.
Here’s my holiday happy for the day: I promised myself I would buy a chocolate orange the next time I saw one, and I did. Furthermore, I noticed that the DARK chocolate orange is actual chocolate, not “chocolate confection” like the milk chocolate and toffee ones. Win. I know what I’m having for dessert tonight.
Your first sentence is so delightful, I’ve read it half a dozen times just to continue enjoying it. Really the second sentence is also very enjoyable.
Also I am definitely going to need to get a dark chocolate orange now. And perhaps a toffee one as well. (I already have a milk chocolate orange.)
OMG, had never heard of toffee chocolate oranges so I googled and and they are available in Canada! Going to get one! Or two! Or maybe 3!
Swistle, is there an address (PO Box, etc) at which you’d feel comfortable receiving mail from your blog readers? We’d be very happy to send cards etc your way. I wish there was more we could do. This is hard on you. If you were a local friend I’d swing by with food and the keto ice cream bars I’ve been devouring lately.
TELL ME MORE ABOUT THESE KETO ICE CREAM BARS
Keto Pint Chocolate Ice Cream Bars! Linked it via my name. They were $5.50/4 locally.
They taste AMAZING, I honestly can’t tell the difference vs regular ice cream, and I’ve never been able to say that before! I feel energetic and cozified after eating them. And the ingredients are really clean, so I’m not allergic to any part of it.
10/10 would recommend, even at the full website price, but you may be able to order them with your usual curbside order if they’re at your stores.
The worst part of being an adult, in my opinion, is that whenever you get hit with a physical illness or overwhelmed by family crisis or whatever, you don’t get any grace from the world. Everything you don’t/can’t get done just piles up and snowballs into more work waiting for you. (Missing the UPS delivery because you were at the hospital so now you have to go sign in-person is the perfect example.)
And actually it’s not just about being an adult, but rather about being a parent, because you’re not just responsible for handling your own personal sick days, like Edward who got pneumonia and needs to make up his schoolwork. You need to be the adult for all of Edward’s stuff, *and* for your own shot side effects. It’s exhausting.
I’m so sorry you got hit by so much all at once. I hope you can triage out some stupid stuff (throw out the dodgy string of lights) and get through this. And I hope Edward has a fast full recovery!
Ermagherd, your week. It has got to improve.
Also, I think you may be right about that breathing tube business. Behold this enlightening Mayo clinic info!
Hospital-acquired pneumonia
Some people catch pneumonia during a hospital stay for another illness. Hospital-acquired pneumonia can be serious because the bacteria causing it may be more resistant to antibiotics and because the people who get it are already sick. People who are on breathing machines (ventilators), often used in intensive care units, are at higher risk of this type of pneumonia.
Health care-acquired pneumonia
Health care-acquired pneumonia is a bacterial infection that occurs in people who live in long-term care facilities or who receive care in outpatient clinics, including kidney dialysis centers. Like hospital-acquired pneumonia, health care-acquired pneumonia can be caused by bacteria that are more resistant to antibiotics.
Or don’t! Don’t behold it! It’s 3:00, so basically sunset, and cocktail hour!!!!
This was my (slightly alarming) thought too. If it IS hospital acquired, he may need to have additional testing/culturing done to make sure he’s getting the right antibiotic.
I can answer the pneumonia question!
Pneumonia is basically a term to describe an infection/inflammation of the lung – it can be caused by many things, often a virus or bacteria. There are certain bacteria that cause a bacteria pneumonia, and that is treated with antibiotics. Various medical conditions/illnesses can cause someone to be more likely to be infected with (and that infection to take hold ) said bacteria – immunocompromised individuals (from medications or medical conditions) are at higher risk. Being in hospital/having procedures like you described can put a person at risk (there are lots of sick people with bacterial illness in hospital, etc). So while the bacteria causes the pneumonia, where he got the bacteria from is very hard to say for sure – could be just the grocery store, could be introduced during the procedure!
So. Much. This. ” I am getting to the level of Overwhelmed where I am starting to make impulsive decisions to get things out of my realm …and I am DEFINITELY in “where possible, use money to buy time” mode. I am also trying not to discuss ANYTHING of ANY importance with ANYONE, because I am in the state of mind where a conversation about maybe dealing with one’s own crumbs on the counter could turn into a conversation about LEAVING AND NEVER COMING BACK.” I left work early yesterday to force myself to make a few decisions which I needed to snowball into a thousand decisions. $500 later, I am much further ahead on planning two parties and much further behind on sleep and work. I really hate the holidays. I love/hate them. So much twinkly, cold glittery goodness and yet SO MUCH STUFF. TOO MANY PEOPLE. Sky high expectations. Built in disappointments. Besides which, the assorted family problems plaguing me from summer are still hanging around and that feels very unwelcome in winter. Whew. Thanks for reading my mind.
Holding space for you. I’m of the opinion that Paul should have to handle getting the package and also handle helping Edward get the work done.
My husband, who has Crohn’s, recently had severe upper back pain that sent him to the ER, where he was diagnosed with…pneumonia in one lung. I had no idea it could present that way. Immunocompromised people! Go figure!
It does NOT sound whiny at all, but I do have a lot of sympathy, because that all sounds exhausting at exactly the wrong time of the year for exhausting out-of-the-ordinary shit to happen. And I wish I’d asked for your address so I had sent you a Christmas card already (but I still can if you want to give it to me).
This would be enough for me to take to my bed, even at non Christmas time and without a Covid19 booster. I hope Edward is feeling better already and has a quick recovery.
Hi! I hope Edward feels better soon! I’m going to tell you a story about pneumonia (not to freak you out, I hope) to commiserate how weird and overwhelming it can be. My husband got pneumonia three years ago in December. His also didn’t start with a cold but with a fever, just like Edward’s. He felt bad, aches everywhere, just like he had the flu. I mean I legitimately thought it *was* the flu. Until he started wanting more and more painkillers. Until he told me he couldn’t sit up by himself to take those painkillers. Until he told me that his entire chest hurt. (At that point I was thinking something like a heart attack and we had a doctor (our GP) come by because he was too sick to just move. (I’m in Europe for reference.) Doctor suspected pneumonia immediately and had him taken to the hospital. It turned out to be some kind of bacterial pneumonia and we have to this day no idea where he picked it up. He had to take antibiotics and so did me and my then 1 yo for preventive reasons. It’s so weird to not know how he got it. I just want to flag though: my husband has ulcerative colitis (which is sort of like Crohns but the inflammations are confined to your intestines. Because he takes immune suppressing medication (which the doctors obviously knew about) there was some weird interaction between the meds he was on, his disease and the pneumonia. He was in the hospital the entire time and as such closely monitored so that felt very safe but it was still a bit scary to go through for all of us. All of this just to say: know that that might happen and that it doesn’t mean bad things will for sure happen. My husband is now fully recovered and we went on to have another child. ;)