This Is The Sick That Never Ends

Two things that make a parent’s ears bleed in the car: “Are we there yet?” and “This is the song that never ends”…..Well, I’m pretty sure that the only thing to make MY ears bleed, is “Mrs. Martin, this is (insert name here) from school. Greyson is sick and needs to be picked up, he’s got a fever”. Truthfully, that is most likely any special needs parent’s nightmare.

We started 2023 on a strong note! Minimal sickness, Derek doing well with his new job, the kids doing well in school and me- managing a job, taking care of the kids and maintaining our home. In the beginning of March, Roslynn started with a minor stuffy nose when she came home from school, but because allergy season has begun, I didn’t think too much of it. The next day, I was already a day behind on my work, so naturally Roslynn would need to be picked up sick from school. She came home around 1 pm with a fever, so I let her relax up in her bed with her tablet. Turns out that her fever was difficult to manage, even while alternating between ibuprofen and tylenol. She slept most of the day Thursday, but because she was running a fever, she wasn’t allowed back to school until Monday at the earliest. The next day, I was occupied picking up Roslynn’s new kitten from a breeder in the Harrisburg area, so I had to drag her along in the car since she wasn’t able to be in school. Roslynn named her new kitty, “StellaLuna”, but we call her “Stella” for short. Stella is a wild Siamese kitten, with a very silly personality and a very cuddly disposition. Once home from picking Stella up, I could see that Roslynn was conflicted between playing with Stella and falling asleep. She eventually did fall asleep around 1 or 2 pm and didn’t wake up until Saturday after 10 am. WOOOOOOOOOOOOAAAAAAHHHH. This kid was so exhausted, she couldn’t leave her bed, except for the very short walk to the bathroom and back to her bed. She slept, drank bottles upon bottles of water with electrolytes, and ate only applesauce. She was consistently running a fever of 101+ for the next 3 days. Needless to say, I was preparing myself to get ill, too, since I was with her for 5 days straight taking care of her.

Roslynn was back on the bus Tuesday morning to head back to school. I was relieved to have both kids off the school, as I was now 3 days behind on my work. I am cruising through my never-ending list of client letters, when I see a call coming through from the school. Initially, I was positive it would be the nurse calling about Roslynn again- thinking she could have spike a fever again, despite being fever free at the time she went off to school. I finally answered the phone and its not Roslynn with the fever- it was Greyson. The scary thing about Greyson running fevers, are the febrile seizures that can accompany any increase in body temperature. Getting accurate temps from Greyson is nearly impossible unless he is sleeping, so I got him home from school and camped out on the couch to nap away the fever. After one too many episodes of Teletubbies, he was finally out cold. I took advantage of the moment and got a temp of 103 on him. I mentally prepared myself for a long evening of fevers, crying (probably more from me than him) and insomnia.

The virus hit Greyson pretty severely. He ended up being sick, asleep on the couch or in my arms, for the next 6 days. By the time he was clear to return to school, I was 100% convinced that I was next to be down for the count. I was around both kids for 10+ days of sickness, running on little sleep, stressed, and with my own health issues, I knew I was going to get it next.

Derek has been working non-stop recently, being the only person with his credentials at his center, a lot is placed on his shoulders. He has always joked that he has the “immune system of steel”, but Mr. Steel has not been so lucky this year. He came home the next Friday (3 days after G was sent home with the fever), and was bed-bound for the next week. After a few days of a very high fever and extreme lethargy, I suggested that Derek see a doctor, which he did early that first full week of sickness. Derek aka Mr. Steel, had pneumonia and a possible bacterial infection and needed to start a steroid and antibiotic ASAP to knock the illness out. By Friday, he was still sick as a dog, and he ended up in the ER in Ephrata. After a chest and neck x-ray, it was discovered that Derek did have pneumonia in the lower left lung lobe (try saying that really fast), and his other tests came back negative. Upon his arrival at home, he was back to his place on the sofa when he got a call from the hospital that he was just seen at. Turns out, the rapid strep test that Derek had done earlier that week in the doctor’s office was incorrect- Derek had pneumonia AND a bacterial Strep A infection. WOOF. Luckily, the docs got him on the proper antibiotic and with the continued use of the steroid, he has improved drastically over the past 5 days. Knock on wood, but I am still healthy and have not caught this bug, and I hope to keep it that way!

Flash forward through all the sicknesses, Greyson had a follow up appointment with his Neurologist today. He has not seen Dr. M since October, before she was out on maternity leave. Greyson did GREAT at the visit, other than minor crying when his VNS data was being collected (he has to sit still for 1 full minute to obtain the data onto a wand device), and the exploding diaper situation that I had to handle. In today’s society and many individuals needing to wear diapers, etc., I am shocked that there is no adapted changing station/table in a bathroom for people. I was not surprised that the changing table in the family bathroom wouldn’t hold Greyson- I almost expect that at any place we go. I was hopeful that maybe the more specialty offices and hospitals that we visit will have some sort of changing place for larger children/young adults, but until that happens, I will survive kneeling on a public bathroom floor to change my child. The outcome of the visit was that Greyson has been doing so well with his VNS, we thought it was time to begin decreasing his least useful seizure medication, to eliminate him having to take 4 different medications a day for them. Over the next couple of weeks, we will be slowly removing the Lamotrigine (Lamictal) from his system, but increasing his Onfi script just in case he begins having breakthrough seizures. I am hopeful that we will get him off the med and I hope we can slowly get him down to a handful of medications a day, if needed.

A fun fact that has happened to us recently, is that Greyson lost his first tooth (officially)! I don’t count the three top teeth he had removed in July 2022 actually him losing the teeth, since they were technically pulled. He lost his lower front tooth last week while he was at school. Funny enough, he actually pulled his teacher over to take it out for him AND he’s almost got the other front bottom tooth pushing its way up, too. His top front teeth are finally coming in and we are looking forward to a less gappy mouthed kiddo for his school pics come August.