October 9, 2021. 1st Post-op.

We parents had a possible Covid exposure and we were masking at home for a while, but thankfully we’re negative for COVID.

Brother’s surgery went well. He is home recovering. Kids thought it was strange I referred to him nameless, and I spent time discussing how later anonymity could be a great gift that he may appreciate in a few years, that he can define himself on the internet rather than by mom and sister via this blog. And so, I refer to him as brother and try to be vague about him.We discussed with Alyssa with the massive ongoing interest in her condition, for my sanity to streamline disseminating information, and I write carefully, often with her approval first. Al says it’s still good to ask for prayer, so we still touch on prayer requests for brother.

We had a scare Thursday where he went to ER for chest pain, turned out to be muscle spasms. Glad it was nothing serious. He got an EKG to check out his heart, and since we had recently talked about heart healthy foods, he realized it’s scary to get a heart attack, even in 50 years. We reassured him that it takes 50 years of bad habits to get there, and then he looked at me and questioned how long I’ve been eating bad. 😅 Then he wanted a salad. So I ran out and bought ingredients and made a salad. I’m not going to poo poo on his health kick!

Alyssa’s procedure went well, after another migraine at 1am that thankfully cleared up with medication, ice pack wrapped around her head, cold water, Mountain Dew, and more sleep. Her procedure was done quickly, TWO bumps were discovered and sent to pathology (most likely nothing serious but just in case), and she has an antibiotic oral rinse. She has mild pain that is being managed by Tylenol and has one stitch in her mouth and she’s pleased. Stitch untied in a few hours, but doc said it’s ok and expected since tissue was so superficial. Stitch string should dissolve away in a few days anyway. Her wound was sealed. She is now eating soft, bland food for 3-5 days.

Alyssa’s ophthalmologist visit went well, as expected. It is a routine visit to monitor her eyes, as she is at risk for some problems such as drusen, due to protein depositing in her eyes, not just her kidneys. This is not an urgent concern, as she does not have advanced renal failure and heavy protein deposits, as she is in early stages of her condition. Also, we watch for glaucoma, as she is on prednisolone.

Thank you for the offers for meals and help to babysit and reaching out for encouragement. I’m going to have to pass on a lot of these because I find that coordinating receiving these is more stressful than helpful. The best way to help is to only text me if urgent response needed. What I really need now is rest and be able to sleep when I can. My phone medication alerts go off for everyone about every 3 hrs continuing throughout the night.

Alyssa’s diet is too difficult and limiting yet she’s an adventurous eater. She gets sad watching us eat what she can’t eat, so it’s easier to just cook larger amounts according to what she can eat and eat along with her. Brother also has a peculiar diet due to his soy allergy that he’s not grown out of yet, plus he’s very particular with textures and temperatures. Explaining these in detail sucks the life out of me faster than watching Al’s scary shows.

But you know, my situation isn’t even bad. I actually have time to write and rant. Friends who have more medically complicated children have a very heavy, unrelenting burden and need home nurses or other regular support. Here’s an interesting article about their kind of struggle since the pandemic. https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html.