“MOMMY! I. WANT. GO. HOME! GO NOW!”
A fourth, a fifth, and a sixth time. Rae continued to cry out most of the morning. She was begging and pleading with me to let her leave the brightly colored halls of Children’s National Medical Center. She cried even before a tall slender woman put on some blue gloves and started Frozen on a TV for her. She knew it was coming.
She is so over it. And so am I.
She had an appointment with an immunologist this morning to discuss her recurrent staph infections around her gtube as well as all the other countless colds, upper respiratory infections, ear infections, sinus infections, stomach bugs, fevers and bouts of lethargy she’s had over the past year. It feels like she is ALWAYS sick. There’s always a runny nose to wipe, a low grade fever to keep an eye on, a hacking cough or an ear pull with her. So we were told last appointment, back in December, with Infectious Diseases that her lymph nodes were not swollen, in fact they were tiny. “Barely there,” she said. Which, to my non-medical degree brain, I thought, OH GOOD! In fact, I said it out loud and her new doctor whips her head from looking at Rae while feeling down her neck and says, “No! Not good!”
Apparently this is an indication that Rae’s body doesn’t produce enough antibodies. Antibodies that she needs to fight infections. I just thought swollen=bad.
So they ran labs several times in the past few weeks. They are looking at antibody levels, and various other blood disorders. They told us to follow up with immunology, which is why we were there today. Her doctor today said we’re looking at some sort of immune system issue, whether it be something she can grow out of and deal with on her own, we don’t know yet. They would run more labs and test to make sure her immunizations actually took. Otherwise she could be susceptible to those diseases. They would recheck her antibody levels and depending on how low they are we would be talking about antibody therapy at our next appointment next month. These therapies could mean anything from an injection once a week, to infusions every other week in the hospital over a 4-6 hour time period, or a central line placed in her chest where she would have her therapies at home. Best case scenerio, if they’re borderline low we can watch it for a month or two and see if the numbers come up as she gets older.
Rae and I walked the hallway back to the waiting room to wait to be called back for labs. We walked past a room filled with big blue chairs, about 8 of them, lining up against the wall. It was the infusion room. I couldn’t bare to think of taking a second glance to wonder if one day Rae and I would be in there. We sat waiting to be called back for labs and again she started.
“NO! NO! MOMMY! NO! MOMMY! MOMMY!”
We’re no rookie to labs. In the past year she’s had labs between 1-3 times a month. There are few doctors appointments we leave without a script for more blood to be drawn, more marks to be left. The sounds of absolute fear and pain and hurt comes bellowing out of her tiny little lips and she says my name. She cries out begging me to help her. She’s seeking an end to the fear and the hurt that comes with the unknown and she’s asking ME to help her.
But while she’s crying out my name, I’m crying out His.
“Dear Lord, please continue to keep her safe.
Keep her well, as well as she can be.
Help guide the doctors to know what the right call is for this and every other issue that may come Rae’s way.
Help her grow.
Help her thrive.
Help me do what’s best for her.
Help me be strong when she can’t be.”
Labwork isn’t unknown to us. It’s not the be all and end all of her medical issues. It’s not the biggest concern we have for her. We have a fear for whats next, whether it be orthotics (her appointment for this is next week), possible antibody therapy, or a mito diagnosis that’s hanging over our heads that we’re hoping slowly slides off the table and turns into a confidence that she will no longer need any medical assistance. But, man, if those labs today didn’t just rip into my heart and beg me to cry out to the only One who can possibly make all of this feel okay.
“Be joyful in hope; patient in affliction; faithful in prayer” Romans 12:12