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Surely you won’t be too surprised when I tell you who had a fever and was vomiting today?

That’s right: my sweet Brady-Bean, Brado-potato, the Braedanator. (Please, do everything you can to restrain yourself from ever repeating those pet names in his presence or he will disown me.)

Yup, came home yesterday afternoon and crashed on the couch with a mild fever. Woke up in the night to throw up off the side of his bed before falling back to sleep. Of course, this is just an ordinary (and sometimes extraordinary) kid with an ordinary sickness; no trips to the ER for IV fluids this time. He’s very philosophical about the whole thing too, as in, “Mom, isn’t it a good thing I didn’t eat those turkey burgers for dinner because then I’d have so much more inside me to throw up?” (Yes, indeed … good thing.)

He perked up as the afternoon wore on and is now feeling totally fine, but still using the “sick” excuse to sit on the couch glued to iCarly.

Nothing but ordinary over here.

Sooooo, here’s the rundown on our weekend.  The boys and I went out to Chagrin Falls (dang, is that far away) for the Kick It event Friday evening. Their team had fun despite being a hodgepodge of ages and sizes and ability levels. We literally had three year-olds who didn’t know which way to run after kicking and ten year-olds who were slamming the ball into unsuspecting opponents as they moved from base to base.

And Austin, the boy of the hour, was completely uninterested. Clinging to Mommy, begging to be held and only kicking when bribed by one of the organizers with his very own ball to take home. I was a little bummed that he didn’t participate more, but wasn’t shocked because his public M.O. is one of shyness and disengagement.

As soon as our official game ended and the kids were organizing their own mini-game off to the side, the tornado siren went off. Huge long wails circling around the community, while those of us on the fields looked at one another with raised eyebrows and shrugged shoulders. “Is that, like, … a tornado warning?”

Suddenly the refs blew their whistles and people started running for their cars, actually running, clearly not inner-ring dwellers like us who’ve never even heard a tornado siren (did I tell you the eastern edge of Chagrin Falls is far away?). Meanwhile, the sky was slightly gray but certainly not foreboding and there wasn’t a drop of rain or a breath of wind. So we hung out for a bit as the organizers quickly packed up the tents and unclaimed trophies before making the long trek home.

A half hour later (and still not a drop of rain), Austin was snuggling with Mark on the porch swing while Braedan and I walked up and down the block to retrieve the (adorable) signs from their (successful) lemonade stand, which raised an extra $52.52 for Kick It.

Breadan was complaining about the “stupid” weather people who blew that horn and I repeated ancient motherly wisdom: We’re better safe than sorry. But little did I know how that small piece of advice would come back to bite me in the ass.

When we finished our neighborhood walk, Austin was asleep on the couch and I didn’t move him up to bed until well past 9. And he was broiling. Sweaty hair matted to his head, red rosy cheeks burning with fever. Yes, a 102.6 degree fever. Not the end of the world, I told myself, he doesn’t have a central line, it’s not an automatic overnight in the hospital like it sued to be. I gave him Tylenol and he quickly feel back to sleep.

Only to awaken an hour later throwing up. After we cleaned him and the rug and the bedsheets and ourselves, we texted Austin’s oncologist just to let him know. Within a half hour, Mark and I were standing in the kitchen hovering over the speaker phone while Dr. Auletta suggested a visit to the emergency room. Mark and I were shaking our heads and mouthing, “No way” to each other — I mean, it’s just a kid with a fever, right? — while Dr. A repeated what we already know: One traumatic event of dehydration could destroy what remains of that kidney. Austin simply cannot get dehydrated.

Ultimately, we were advised to keep giving him fluids throughout the night and if he could manage to keep them down, we could wait until morning to visit our pediatrician for bloodwork. Mark and I sat at the kitchen table long after that conversation reminding ourselves and each other that Austin is not a regular child. Even when he looks like it and acts like it, even when we all feel like life is normal, it’s just not. And it could turn on a dime.

At about three in the morning, Austin was lying between us in bed shivering uncontrollably despite the blazing heat emanating off his body. And then he was throwing up again. We swooped him into the bathroom, washed him down, stripped the bed, and then I got dressed. Glasses, cup of coffee, charged phone (not that it works in the basement ER anyway). I was most bummed to learn that the brand new state-of-the-art pediatric ER doesn’t open until July 7 (bad timing, Austin), and off down that damn hill we went, one more time through the quiet and empty streets.

We walked in the old ER (yuck) and Austin, just for dramatic effect, puked three times in front of the registration counter. Finally, we were in a room with an IV placed, labs drawn, anti-nausea meds administered. He is a spectacular patient, braver and more mature about medical procedures than about any other aspect of his life. I slept fitfully next to him on the tiny bed, while he snored and blew stinky throw-up breath in my face. At 7:30 he popped up and announced he felt “so much” better, was able to keep some water down and we were out the door and home before 9.

He was in and out all day yesterday, some moments of playfulness and others of feverish misery. But he hasn’t thrown up again and, between juice and fruit popsicles and an occasional piece of toast, he seems to be fine.

As we left the hospital on Saturday morning, one of the nurses told us to come back and see the new ER when it opens. “It’s soooo beautiful,” she gushed. “Hope we don’t have to!” I called as we walked out the door.

But we probably will. Better safe than sorry, after all.

… of sorts.  Tomorrow it will be one year since we moved into our new house. And while that makes me feel a bit guilty about the number of boxes still stacked in the guest room, I could not be more pleased at the drastic difference between our lives then and our lives now.

We were stuck in those awful months of never knowing where we would sleep each night. I remember the Friday before we moved, eating dinner with Mark’s parents who had come by to help us finish packing, when I went upstairs to wake Austin from an unusually late nap. And he was burning hot.

Oh, the dreaded fever. Anything but a fever right now! But a fever it was. So I called the oncology department and they told me what I already knew: pack a bag and get on down here.

We spent the next two nights in the hospital, while random friends came over to pack up our house. I had had grand plans of weeding out all the useless stuff instead of moving it along with us. But no, I opened boxes over the following weeks stuffed to the brim with everything from matchbox cars to pots and pans to shoes too small for either of my boys.

I had to beg and plead and cajole and threaten the doctors and nurses to speed everything up so we could spend our very last night together in the only home either of my children had ever known. We made it, Austin and I released on noon the day before the moving trucks arrived.

What a lot of drama for one family to endure, my god. But today, this is home. And we rest assured that we will get to sleep here each night.

If it’s not one thing, it’s another.

Now that the hand has (mostly) healed and the kidney is (mostly) bouncing back, we’ve allowed ourselves to fully embrace our normal lives. We’ve allowed ourselves to believe that we lead normal lives.

But we don’t.

When Austin had all his scans two weeks ago, his hemoglobin was low. Not below the threshold that required an immediate blood transfusion, but on its way. His doctor recommended coming in the following week which I pushed off until this week because I didn’t want him to miss camp. And then over the weekend, he got sick. A fever, sore throat, complaining about his ear hurting, long and fussy nights. So yesterday, we had to go to the clinic anyway to match his blood for the transfusion and I asked for a doctor to see him just to be safe.

Weeeelllll: Fever, ear infection, suspected dehydration (which didn’t turn out to be the case, luckily) and most likely, anemia. So, you know what comes next, right? They placed an IV in his arm, started him on fluids and IV antibiotics, and we waited. And waited. I sat in a small chair with this big sleeping boy, sweating out his fever, in my arms. The hours ticked by until they found us a room on the over-crowded in-patient floor and over we went.

Another long and restless night, with Austin waking up every time his blood pressure was taken or every time he rolled over and became tangled in his IV line. Then he’d request that I join him in his bed, which was many times more comfortable than the rubber bouch (bed-couch) I usually sleep on. But by now he was sweating out the IV fluids and soaking the sheets underneath him, so I was back and forth, back and forth between bed and bouch, until we both finally slept soundly from 5 until 8 (Austin until 9:30 actually).

His fever has passed, and his kidney numbers look fantastic (which, of course, is all that really matters) and he is finally, just now, starting his transfusion, after a long and boring morning quarantined to our room. The blood, lest we forget, takes seven to eight hours so it may be past his bedtime but I will fight to be released as soon as he’s done.

One more night, one more time, one more brief trip down this dark road. Every time I dare think we are passed the danger zones, every time I dare imagine that we have a wide open future ahead of us, fate or bad luck or something steps in and snaps us back to reality. Not so fast, it says. You may feel normal every now and again, but you are not.

But, despite hospitalization for every little ear infection and sore throat, I hold tight to the belief that we have a wide open future ahead of us. That one I will let go of.

We’re hanging in there, thanks to an army of friendly volunteers helping wrap, pack, carry, load, move, feed and care for. Austin is still in the hospital, but should be released tomorrow which means that, yes, thankfully, we will have our last night together here on Edgehill Road, a minor issue in the grand scheme but one that seems extremely important to me nonetheless.

His fever continued to rage throughout the night on Thursday, due in large part to his adamant refusal to take Tylenol. He doesn’t usually mind Tylenol (and, in fact, sometimes he downright loves it . . . ) but on that particular night, he simply would not take it. I think it was the one thing he was able to exercise some control over and he would not give that up. Finally, around 2 in the morning, the nurse and I held him down and forced it into his mouth.  He, of course, spit half of it out but enough made it into his system to begin the long slow (and very necessary) process of lowering his temperature. Early the next morning, I told him we wouldn’t be allowed to ride the tricycle in the hallway if he had a fever and he happily and quickly downed another dose. He then turned to me and said, “Ok, let’s go.”

He was briefly allowed out today after twenty-four hours of no fever but only while wearing a mask (because of his cough). He was surprisingly okay with this rule and donned his Mickey Mouse face mask while cruising the halls:

His counts have been slowly rising but we need to wait until his blood culture continues to be negative for bacteria growth. I think the deadline is midnight tonight so if all goes well and no last minute symtoms arsie, we should be sent home before lunch on Sunday.

The small fact of our being together in our home one last time somehow makes all the insanity of these few days bearable. And trust me, there has been insanity. Take, for instance, the gas leak at the new house in the main line from the street that required a full crew out there on this 15-degree morning digging a new hole and placing a new pipe. But, it’s fixed now, the heat is up and running yet again. And, as is somehow always the case, this too will be okay. We will be out of that damn hospital and home together. Home here and then home there. And that is all that matters.

February 2020
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February 2020
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