Hi there! I’m typing to you from a laptop that is sticky with starburst fingerprints. It’s been quite the day. We’ll call it “February isn’t over yet.”
If you deal with chronic illness, especially in a child, you know that February is something to be greatly feared. Sure, I bet when you think of cold and flu season, you probably think of, oh, say December when everyone’s sharing colds around as they visit each other for the holidays. February is much, much worse. February is respiratory illness wonderland. it’s when the hospitals fill up to overflowing and they start putting beds in the broom closets.
According to Facebook’s memories, Patrick has been sick and often hospitalized pretty much every February of his life.
I wasn’t sure how we’d managed it. The children at Patrick’s school are walking around looking like death. Everyone we know has been sick. And yet, our immunocompromised superhero has been healthy.
Well… had been healthy.
This morning, Patrick did something he’s never done before. He told me, “Mom, I think I have a cold.”
Please note, this doesn’t mean he’s never had a cold. He’s had lots of cold. Doozies of colds. He’s been admitted to the hospital over many, many colds. But because of that exact fear. Being sent to the hospital… he doesn’t admit to being sick.
I was super proud of him.
And I decided to listen to him. Patrick really isn’t very sick. If he hadn’t said anything, you might not even know for sure anything is up. He is so good at pushing forward through things. But he’s been extra sleepy. A little grumpy. Restless. And has had a bit of a cough. Today, we added on an adorable nasal-y voice.
But, really sick or not, Patrick already had a checkup scheduled at the hospital at noon. And so he was going to attend less than 2 hours of school anyway. Which means no credit for the school day at all. And so – we kept him home.
One thing that all these years of medical surprises has taught me is how to throw all my plans to the wind and dive into super parent mode. I did pretty darn awesome today, if i do say so myself.
Because he wasn’t crazy sick. And because he LOVES schoolwork more than just about anything. And because yesterday we tried resting and watching TV which only led to a very restless child… I told Patrick he could stay home but only if we did school at home.
I let him take a longer bath and while he was in the tub I e-mailed his teacher to ask for a list of spelling words. I roped off Howie’s office, since he was working from home today, which is a huge temptation for them both. And then, while he played with toys for a bit, I hopped onto Teachers Pay Teachers and downloaded some freebie homework sheets for him. Some math. Some reading. A cut and paste word family page. AWESOME stuff! It is so much easier going and getting him relevant homework when I’m not trying to pull my own curriculum out of thin air.
And then, after doing a few pages of work, I pulled out the chromebook and i logged him into the websites that he works in during computer lab at school and set him to work. We had a blissful half hour where he worked independently! Then we went to the backyard and had “recess” and talked about what to do next.
Patrick voted that he wanted to eat lunch in the hospital cafeteria. Don’t fault us for unusual comforts developed over the years.
So we packed up early and drove off to the hospital. We started out in the outpatient building’s cafeteria but alas, they had a menu that was more fancy than comfort food… hospitals do that sometimes so the staff won’t get bored of what they eat. But thank goodness the main hospital cafeteria still peddles good old comfort food fare. We got Patrick a bowl of macaroni and cheese while I grabbed some deli-case sushi. (Again, don’t mock our comforts). Then we picked up two rice krispie treats and a carton of milk and booked it back to the outpatient building for his appointment.
We checked in, weighed in, checked vitals, and then set up lunch in the exam room. A family tradition.
The checkup went well. Our experiment in g-tube boluses of carnation instant breakfast has paid off in some weight gain. And, though they were a little disappointed to hear that his diet isn’t currently all oral, his doctor pointed out that “that’s why he still has a g-tube after all.” and the dietitian agreed that it might help train his stomach to want food at the times we’re giving him these extra feeds and that’s good. We talked about some longer term strategy.
And then Patrick talked his doctor into drawing him a picture of a monkey as a “prize.”
This appointment went remarkably quickly as far as GI visits go. We can sometimes be there hours. This time we were done by 1.
And so, not wanting to referee “don’t bug dad at work” time too much longer, I offered Patrick a field trip.
He’s been working on the astronomy-with-a-cute-name belt buckle in cub scouts, so we stopped at the planetarium to help him with that requirement. It was a madhouse. There were at least 2 school field trips there. But Patrick seemed relieved to run wild with the other children. And I still managed to point out and describe the planets to him, and telescopes, and other astronomy stuff. Then we stopped in the gift shop and let him pick out a bookmark/ruler with the planets on it. And amazingly, he was reciting some of the names back to me. He is very offended that Pluto isn’t on his bookmark, even though I tried to explain dwarf planets. Aren’t we all.
Anyway… home again and this time convinced him to take a nap.
He woke right on time for me to tuck him into my bed to watch Blues Clues while I threw together dinner and tidied up the house before our next appointment.
A nurse came this afternoon to officially admit Patrick for respite nursing through the Utah Medically Complex Children’s Waiver. This is on top of the other respite we already have and feels a bit splurgy. But it’s required for him to participate in the waiver. And it’s required that it be done by a nurse. So we are doing it.
Patrick was a total flirt with the admitting nurse and she played along beautifully. Meanwhile, I did my best to communicate a clear medical picture. You know you’re a medical parent when you know which diagnosis needs to be listed in each system. And when you provide a list of medications in writing so they don’t give a copy back to you.
Anyway… that done, I cooked dinner and Patrick played with the chromebook. Don’t tell him that we bought this thing largely for him. Because you can’t tell him it’s his. He wants it. But that means he wants there to be no rules about it. And besides, I like to blog here.
While dinner cooked I managed to convince Patrick to do one math worksheet. And then after we ate, we sat down and had him practice writing out his spelling words. I told his teacher I didn’t think he was being challenged and now he had 5 words again this week. Usually, that would be just right. Today though, he wasn’t feeling great and he wasn’t happy to do so much writing.
Bedtime finally came and he got exhausted quickly. We scrapped our Family Night plans and just worked together for a quick bedtime. Complete with antihistimines (he’s not allowed any other cold meds) and vaporub and a humidifier. He was asleep in minutes.
I don’t know what tomorrow will bring. Howie and I are for sure also coming down with something. And i’m not sure Patrick will be up for school tomorrow. But it’s labwork morning so we’ll be up bright and early regardless. Doesn’t hurt to see how being sick is affecting his body. And we’ll go from there.
If I don’t post soon, you can probably assume that Patrick slowly got better and needed lots of my attention, and then one day he was better and I looked around and realized just how much else I neglected while in super mom mode. Anyway – usually on this blog no news is good news.
Happy February.
p.s. If you want to know just how nasty the cold and flu season is at any moment in Utah, check out this website https://intermountainhealthcare.org/health-information/germwatch/
Patrick Hoopes 