Most days, Grace's day doesn't differ much from Remington's. Most days, they both play, go to school, and have a good life. Sure, she takes a couple of different medicines daily, but that is a tiny blip of their lives, and nobody minds it.
But when she has a fever, the difference becomes strikingly, heartbreakingly clear.
Remington, like most kids, has had a few fevers in his 4 years of life. He is hot, we give him Tylenol till it is better, and do our best to keep him happy, at home, and drinking liquids. In a few days it passes, and he doesn't mind sick time so much, because it is lots of mom cuddles and extra TV.
I wish we could give Grace the same. I would LOVE for that to be her fevers. It isn't.
Thursday night, Grace had a fever. Sickle Cell protocol says she has to get checked- i.e. a blood draw- any time she has a fever over 101.3. It was over this mark, and after clinic hours, so it was to the ER that Blake headed that night. Hours and hours in the ER to get a blood draw, an IV and an antibiotic in the IV. [Poke 1]
(Side note here- her body should be able to handle a virus- but a bacteria could be really bad for her immunocompromised body. So all of the protocol revolves around this fact. )
The blood draw will say if she has a bacteria her body is fighting. She usually has to get a follow up antibiotic shot the next day, just in case. In this case, for reasons still somewhat unclear to me, they wanted her to see a pediatrician in the morning on Friday. It was still too early for her 2nd antibiotic shot, but hey, we are rule followers, so we went.
There was a mix up. Because of course there was. Long story short- we got to the doctor's office at 10:30, found out around 11:30 that we were supposed to go to a different location, but that we would be squeezed in there, didn't actually see the doctor until 1:00. Fellow moms, you will appreciate the misery that is keeping a 4 and 5 year old occupied at the doctors, without food, for 2 and a half hours before ever seeing a doctor.
After a short exam, she consulted with the hemotologist on the phone, and confirmed that yes, she needs a shot, and no they couldn't do it yet... so could we please bring her back to the doctor that night at 8:00pm. Fun.
What was the point of that visit? I'm not sure. Moving on.
She gets the antibiotic shot in the leg, super painful one [poke 2]. Oh, and they tell us that we need to go back in today, Saturday, if she still has the fever. Why? Because, my friends, we are still afraid of the big bad bacteria. Since we don't know the cause, we can't just avoid the antibiotics in case her body needs them.
She was limping today from last night's shot, but still had the fever in between medicines... so back to the doctor she went.
This one really breaks my heart. They got the results from her nose swab- para influenza, i.e. flu like virus. This is good news. However, since the results aren't back from the bacteria... they decide to give her ANOTHER shot to protect against a possible secondary infection.
For those keeping track, she has spent hours at night Thursday night in the ER, with a poke for an IV, spent hours waiting at the doctor on Friday, only to return Friday night for a second poke, a painful one, then is dragged to the doctor again on Saturday for another painful poke. My little fighter had had enough at this point, and fought this shot like a tiger- taking 3 nurses to hold her down. But we need to protect her, even if she doesn't understand that yet.
All of this misery these last few days, not even counting that she missed school, a playdate, and a school festival. All because of her irregularly shaped cells and a little fever that doesn't even have other symptoms with it.
Nobody sees this part of her disease but us. You can't tell at school or gymnastics. But we see it, and we feel sick over how hard it is on her, but we fight through it with her, knowing that it is important that we do so. Because the sad, vital truth is that certain bacterial infections, left untreated, could be fatal to our sweet Grace. That makes every shot, every visit, every quantity of hours worth it.
http://www.sciencedirect.com/science/article/pii/S1201971209001453
