Clinic visit today

Today was another day at the hospital for us. Madeleine needed her blood levels tested, especially considering how low her hematocrit was before chemo even began. She is such a hilarious girl and has finally started acting like her old self again! She’s eating well again, as this round of chemo made her much more nauseated than the previous two. She is hyper as can be at times. Oh my goodness! It is so funny.  For example, today when I was giving her her miralax for her constipation, she figured out how to gurgle the water/miralax mixture and kept gurgling it instead of swallowing. I had to try not to laugh and instead look serious and tell her to swallow. But it was so funny – I know I burst into laughter a few times. Legs were kicking and the right leg was even lifting a bit (more in a separate post in after this one). She was wiggling and kept using the chair leg in the dining room* to pull herself closer to the kitty. Haha! It took half an hour to get 2 oz of water into her. Let’s just end it at that.

However, this is a clinic visit update, and I got side tracked. We went in for labs first, per the usual protocol. She is so much more animated that getting her port accessed was a bit more tricky, as she was trying to grab the swabs as she was disinfected, while also wiggling and moving her head around. Given that her cheeks are the size of grapefruits, this poses a problem because the grapefruits collide with her chest where the port is and then re-infect the part that was just disinfected.

Picture this scene: I was holding her in my lap, with her back to me, while holding both of her hands and using my right index finger to push her grapefruit cheek away from the port location all while the tech was disinfecting her one-handed while holding the metallic wrapper to the side so Madeleine would look away from her port – thus helping those grapefruits to stay out of the way. OYE! It was a bit ridiculous, but we got it done. She is just so curious and wants to know what is going on down there.

And then it was time to wait. And wait and wait. They were running behind today, so we read books, played with toys, looked at fish in the fish tank, cuddled. It was great.

Her stats were good today, she has lost 1lb 5oz since she was weighed last week, so she’s now weighing in at 20lbs 15oz. I’m so relieved that some of that ridiculous weight gain is coming off. I had thought she was feeling lighter, and I was right!

We met with Tracy, one of our ARNP’s and she told me the not-so-great news. Madeleine’s hematocrit (red blood cell count) was low. They transfuse infants at 21 and she was at 18.3.  The good news is that she is not acting symptomatic. She is lively and active and not lethargic and droopy. Her heart rate is slightly elevated, but not excessively so, so they told me that she wouldn’t be required to get a transfusion today. They said since she was acting ok, that she could wait to get a transfusion until tomorrow. So, tomorrow morning we’ll be heading back to the infusion clinic to get blood.

Otherwise, she is doing very well, as I already mentioned. After her clinic visit she went to get her nulasta shot, which will help her white blood cell count shoot back up.  Keep your fingers crossed that her platelets stay stable as they are now and don’t drop so she doesn’t need another transfusion.

She’s been enjoying some delicious foods, now that her nausea has subsided. Last night a friend brought over Thai chicken curry. She has been having that for dinner the last two nights, only the vegetables minus the chicken and she loves it!

* Yes, we have to do the miralax drinking on the floor, otherwise half of it ends up dribbling down her chin, thus lengthening the experience. Not either of our ideas of fun.

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