It’s the Little Things

9 Mar

It’s been quite a while since I’ve had to make any big health related/ hospital stay updates. The past week mushes together in one big blur.

I’m not going into any big details because Ladybugs complex care team and ID team are about to round. Saturday my little bug was having a lot of tummy issues and passing mucous like blood. The wards upstairs were all full so we camped out in our cozy little room in the ER. Sunday we moved up into our new home. This is about the point that her health started to get a lot worse.

She tested positive for C. Dificille, her iv line failed, they put in an un-sedated emergency picc line, then a few hours later she’s spiked a 40.5 fever.
For the past few days she has barely opened her eyes. Any medical mama will tell you they can stay strong and give reports to the teams during rounds better than any med student ever could, while remaining calm the entire time. I could feel my eyes swelling with tears as I shared with the team that I’ve never seen my bug so unresponsive for such a long time. Even when her daddy-o surprised us for a visit the other day, she couldn’t even open her eyes to look at him. If you know us you’ll know that he is her favourite person, and no matter how upset she is, when he walks in the room she lights up. It was a very bittersweet moment.

Ladybug has been on the most wickedly strong antibiotic called Vancomycin, and yesterday started on TPN (Total parenteral nutrition is a method of feeding that bypasses the gastrointestinal tract. A special formula given through a vein provides most of the nutrients the body needs. The method is used when someone can’t or shouldn’t receive feedings or fluids by mouth).

Today she opened her eyes and was quietly cooing. It was the most magical sound I’ve ever heard. Then something even more brilliant happened. I put on cartoons for her to watch while I got ready for the day, and Ladybug started kicking, yelling, and was not happy at all. I know the Vanco causes tummy cramps but that wasn’t it. Then I remembered that when her brothers are watching a t.v. show that she doesn’t like, she has a full on meltdown until they change it to something that pleases her highness. I grabbed the remote and picked a channel called HGTV it’s pretty much a home renovation channel. Immediately, the fussing stopped and she let out the biggest sigh. As if to say “ it’s about time you turned off the cartoons, I’m a teenager now not a baby”. It was truly a proud mama moment. My little Ladybug was slowly starting to come back to us.

Today will be mostly monitoring, bloodwork, tummy acid level test, and that’s pretty much it. I’m hopeful her g-tube feeds will slowly start in the next day or two.

Thank you to everyone who has reached out to check in on Ladybug, to our neighbours who have dropped off food for the boys, and especially to Auntie Stacy who picks the boys up every day to bring to school then becomes their second mommy after school until daddy-o gets home from work. I’ve never liked asking for help because it’s “easier” to figure it out on my own. Until it’s not. With you, there was never a need to ask you for help, you and your family automatically stepped up when we needed you the most. We love you, and M, & T, and will be forever grateful.

Here’s an older picture of my little Ladybug when she was happy and feeling good. She is sitting in her wheelchair, outside on a sunny day. Surrounded by greenery. She’s wearing a floral dress, pink sparkly boots, and has a little side braid in her hair.

One Response to “It’s the Little Things”

  1. Darlene Buchwald March 9, 2023 at 9:04 pm #

    Oh, sweet little Amira Zoe… not so little… a teenager, What!! It seems like only yesterday, that we rocked and rocked and rocked in the chair in your room. Thinking and praying for you and your family… miss those ladybug snuggles!

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