Three weeks ago, I spent a day learning how to inject my five year old daughter with intravenous medication. Three weeks ago I learned how to troubleshoot a PICC line, and manage a portable IV pump. Three weeks ago, we brought her home from the hospital. After sixteen days in the hospital, she was released to outpatient care and we were finally able to be home together as a family again.
Of those sixteen days, I spent fifteen at her bedside, only missing the very first one because of the logistics of transporting her to the hospital and caring for our other little one, who is two. I spent fifteen nights on a hard, narrow parent bed in her room, and as much as that was not ideal, at least it was a bed. I left only for a couple of days of work, getting ready in the morning in the bathroom off her room, and coming back at 5pm, in time for dinner and The Backyardigans. Those two weeks were easy and hard and totally bizarre all at the same time. We created new routines, new ways of coping. And just when I was reaching my breaking point, the good news came: she was ready to go home.
She didn’t get fully discharged, though. Her doctors were never fully able to pinpoint the source of her infection, and as a result the most aggressive treatment protocol was put in place. For her, that meant she had to continue with IV treatment every eight hours for the next four weeks. Thankfully there is an outpatient option, but that puts the responsibility on us, her parents, to manage everything to do with her treatment.
Every day. Change the medication bag. Reset the pump. Change the connectors. Flush the line. And the flushing? Injecting something directly into the heart of my baby girl. Honestly, if nothing in this world scares you, the idea of injecting something into the heart of your child will at least make you shiver the first time you do it. We had support, of course, but even with a nurse standing over your shoulder the first time you do it, it’s still a terrifying idea.
To be fair, we haven’t had it that bad. There are children out there so much sicker than our Eliza, and she has adapted so well to having her “robot friend” (as she has named her IV pump) in a small backpack on her back at all times. Coming home, even three weeks later, is still a challenge, though. I still wake up at night in a cold sweat if I thought I heard her pump beep (which would be a problem), or if I hear her moan as she rolls over in bed. I still check her line and her dressing every few hours to make sure it’s still intact. I still pause before I inject the first saline flush, because it still makes my brain twitch to think about where it goes. I find myself getting restless in the late afternoon, because my brain won’t let me get too deep into anything lest I forget to go through the whole medication change at precisely 5pm. And every time I pass the calender, I still look to see what needs to be done today, if it’s a line change day or just a medication change day, and I check my supplies even though I order them a week in advance and I assess our inventory before we order. Of course I have enough saline syringes, cannulas, chlorhexidine wipes. But I still check.
Eliza, on the other hand, has managed this whole experience as a truly brave soul. She runs and plays and goes to school (almost) as normal. She even tries to explain her situation to her friends, calling her PICC line “the Big Poke”. We have tried so very hard to keep things as normal for her as possible, but there’s only so much you can do. We had to pull her from swimming, we have to monitor her activity. Overly physical games, or anything that involves throwing is right out. But she’s a trooper, and she is not afraid. Not like I am.
But we only have one more week. Seven more medication changes, saline flushes, pump resets. Seven more times I will internally freak out as I push the first injection of saline into her line, and seven more times I will look her in the eyes and smile as I do it because if I show even an ounce of fear, she will be afraid too. Seven more nights I will sleep only lightly in case she pads down the hall with her backpack beeping. Seven.
In seven days, she will be free to get dressed without our assistance. She will be able to sleep on the top bunk again, without fear of getting her line caught somewhere. She will be able to play dodgeball again. And swim. And roll on the floor without her backpack getting in the way. In seven days, she will be her old self, without having to be mindful of the pump on her back 24 hours a day. In seven days, we will have a celebration of her strength, and let her pick an activity (I have a feeling we’ll be going to the wave pool). And in seven days, I will probably cry. But this time instead of fear, it will be relief.