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Austin is having surgery this Friday at Akron Children’s. Surgeries, actually, two procedures rolled into one. They’re minor and non-cancer related.  Just a long overdue tonsillectomy and finger repair. You may remember that his swollen tonsils (besides keeping us all up at night) prevented him from being sedated for his May MRI, requiring us to go through the surgical department for full-blown anesthesia. While we hope he’ll have no future reasons to be sedated, we also realize that’s pretty unlikely given his history (and his future). And the poor finger . . . well, that thing’s been bothering him for more than a year as it’s now clawed and  unable to fully straighten. The lovely surgeons at Akron have coordinated their schedules so he only has to have one surgery, which I think (I lose track of these things) brings him up to eleven.

The interesting thing about this time is how nervous Austin is. He’s been so young every time in the past that all these crazy things happened to him without his full (or at times, even partial) understanding.  This time, he is well aware and asking many many questions: “What day are we going again? Is tomorrow when we leave at 6 in the morning? How long will I have a cast on my hand?” I don’t think he’ll have a cast on his hand at all, more like a bandage, but he’s definitely concerned about not being able to write at school.  His teacher has assured me this won’t be an issue (he is in kindergarten, after all), but Austin is a participator — he joins in to any and every activity possible with his full self, so standing on the sidelines will be tough. Especially when it comes to missing his regular Wednesday and Saturday tumbling classes. I already have to set silly rules to contain the near constant acrobatics, like no cartwheeling while crossing the street and no flips after 8pm. Of course, I think it’ll probably be his tonsils that cause the most pain, but that seems a bit too abstract for him to worry about. And I don’t exactly want to encourage him to fear something else!

Sp we go in early Friday morning and will stay over that night. Of course these are both typically out-patient procedures but since Austin is in no way typical, they want to observe his blood pressure and hydration. This will be our first overnight in the hospital in a record-breaking two-and-a-half years, since an unexpected fever in August of 2010. I just reread that old post, “Interruption,” not quite remembering the circumstances of that particular stay. Its closing lines were right on. It finally seems that, despite swollen tonsils or Franken-fingers, we have indeed made it safely to that wide-open future I could only hope for back then. We are living it.

 

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.

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February 2020
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