I am exhausted. Patrick started running a low-grade fever 2 days ago. Because it hasn’t hit 100.4 degrees and has only lasted a couple days so far, there’s a good chance it’s a virus. Patrick’s seeming congested, and I am hoping that’s all it is.
Photo: Patrick watching Bob the Builder, a favorite sick day activity.
The problem is, he still doesn’t feel good regardless. And all I can offer him in the way of relief is lots of love and rest and maybe some extra time with his favorite toys, books, and shows. I can’t risk missing symptoms of a line infection by giving him anything to take the fever and the icky feelings away.
Last night, I set my alarm for 1:30 a.m. so I could sneak into his room and make sure he was getting the right amount of extra fluids, make sure his belly was draining, and check on his fever and other vital signs. Most of the time, I can sneak in and do this without disturbing him and go right back to bed. But last night, his g-tube was plugged and not draining. I fixed it, but while I was watching to be sure it was right, Patrick woke up. And he felt bad. And mom was in the room.
It was all downhill from there. With his tube not draining, I’d run more fluids than he’d lost and his diaper was leaking. So, I changed his pajamas and tried to rock him to sleep.
But, when Patrick doesn’t feel well and isn’t sure that I know the full picture, he doesn’t sleep. He plays and plays and squirms and kicks and talks and sings. He doesn’t complain. But he doesn’t sleep. And I’ve been his mommy long enough to know that this is how he copes when he’s too worried to sleep.
If your child is able to communicate with you what is wrong when something is wrong, and able in turn to understand when you say you know what’s wrong and are there to take care of it… count yourself lucky. In the middle of sleepless and sick nights, I long desperately for this kind of communication.
Is it any wonder that I was moved to tears this week when my insurance company decided that the diagnosis code Patrick’s speech therapist is using isn’t consistent with their reason for preapproving speech services? When they said they’d have to send the diagnosis for a review by a speech therapy specialist who will decide whether or not they’ll continue to pay for this help? Is it any wonder that I’m worrying about what will happen when Patrick “graduates” from early intervention and their therapists will no longer come to our home? We don’t have enough words yet. We don’t have enough understanding yet.
I just wish for the words to be able to offer comfort when Patrick worries.
Still, at least last night Patrick had the words to ask for his favorite song, and for a pillow, and for a book, and for his daddy. And we’ll add words little by little. And what words can’t say, hugs and kisses will try to express.
And I’ll keep using my words to fight for him to get the help he needs. I’ll fight for him to be able to find his own words.
But today, I’ll nap. Because I went to bed at 5 a.m. this morning.
Patrick’s fever is lower today. He is happier. He isn’t as pale. I asked him if he wanted to go “night night”. His reply was “pay pay, gah-guh”.. which if you don’t speak Patrick means. “Play with my wagon.” We played till he started licking everything in sight, then came in and he went to sleep.
I’m watchful today, but I’m not worried. Just wishing for more words.
Patrick Hoopes 