One More Week

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.

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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.

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13 thoughts on “One More Week

  1. Brandee

    This has been such an ordeal for all of you and I admire the strength you have shown through it all. I glad that the time is ticking down and will be over soon and you will all be able to move on. Have your cry, go take out your aggressions or fear or frustrations on the hockey rink and keep moving. You’ve done a great job.

    Reply
    1. Samantha Post author

      Thank you, Brandee. Your support means so much. To be honest, sometimes it doesn’t feel that hard… you just plug on doing what you have to do. But when I think about it, it just breaks me down. I really cannot wait for this to be over.

      Reply
    1. Samantha Post author

      It’s interesting how I’ve bottled them up… I usually wear my emotions on my sleeve, but I didn’t realize how freaked out I was about it until I started to write.

      Reply
  2. Margaret

    I’m so glad that you finally have a countdown. The seemingly unending stretch in the hospital, the prospect of extreme care at home has certainly taken their toll on you and the family unit. I am so proud of you, and the ability to keep us all informed so eloquently, has been amazing to behold. Thank you for allowing us to see into, and experience your world these last weeks. Hopefully by the time spring comes and summer is on the horizon, you will be able to post ordinary issues and activities for a growing, healthy family.
    Love to you all,
    Auntie Margie

    Reply
    1. Samantha Post author

      Yes, here’s to a normal spring and summer! Now if only I can keep the other one from breaking his arm again… we have had enough visits to the hospital!

      Reply
  3. Maija @ Maija's Mommy Moments

    Wow! It’s amazing how strong a mother can become when her child needs her the most. Big hugs!!!

    Reply
    1. Samantha Post author

      Strength out of necessity, there is no alternative. If I can’t keep it together, I doubt she could!

      Reply
  4. Alex

    I’m so glad it’s all almost over for you guys. It’s just so scary, all of it, and even though there are children sicker , that isn’t much consolation, I’m sure. She is an amazing little kid, with an amazing mama.

    Reply
    1. Samantha Post author

      No… but I almost feel bad for complaining when we really have gotten off quite easy. But still, it’s scary for us, regardless of the situations that other families face.

      Reply
  5. Finola

    Wow, what a terrifying thing to happen. There’s nothing worse than when kids are sick, and that’s a long time in the hospital. I’m hoping from the pizza pictures above where she looks so gorgeous and healthy that things are almost back to normal. Scary.

    Reply
    1. Samantha Post author

      We are very close to normal. Her recent blood tests have been the results of a perfectly healthy 5 year old, so we are confident that this aggressive treatment has eradicated the problem. It was perhaps more aggressive than it needed to be, as it was being treated as the worst possible of all the options. And we are also lucky that her infection was caught so early, so she never had the opportunity to get as sick as most do.

      Reply
  6. Jenifer

    Wow! That was so well written!
    It literally took my breath away how brave you are being and how awesome your daughter is.
    Enjoy the wave pool!

    Reply

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