Daily Dose: January 4th, 2021

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Beaudin’s appointment last week with the Apheresis team went well. Actually, really well. The team was very kind and attentive, crouching down and engaging in the solving of cube as though they actually thought they stood a chance of beating Beaudin’s current time (26.4 seconds). There were bountiful snacks that are often not found in our household (fruit roll-ups, goldfish, applejuice) and as expected, endless new movie selections on the in-hospital on demand movie channels. It’s funny how even in the trauma that is the hospital, you can find a lot of comfort.

Inpatient 2019, we came to love the gluten-free waffles on the breakfast menu, The Minions Movie, and the rabbit pellet ice. They were like a security blanket. And even so, if I hear one of the kids use a minion voice, which seems to be all too often, I recall how scary it was then to have the safest thing be the replaying of a movie about small yellow creatures. Scary and comforting, always both.

Anyhow, there we were. Back at it, seeing that the hospital life was something we were unfortunately or most fortunately accustomed to.

And the actual appointment went well too, ha. The team has been using a new method for the t-cell collection which includes placement of a device called a PowerWand. It’s more of less a glorified IV and allows for higher volume movement. He will have one placed in both arms, above the elbow. The procedure is sometimes done bedside, aka without sedation, and we’ve decided that with a proper amount of anxiety meds prior, and a lathering of lidocaine cream, that is something we are willing to try out. The pic team, who places the PowerWand line, came to meet Beaudin at our appointment and check his viens, via ultrasound and as could be expected, they were very, very nice, and left us all feeling warm and fuzzy about things. And by warm and fuzzy, I mean that we (I?) no longer felt like the task at hand is absolutely impossible, but instead just felt like, with enough sedatives we (I?) may be able to eek through.

Beaudin will have the PowerWands placed Thursday morning, early. Then the t-cell collection will begin. That process takes about 6 hours. He doesn’t feel much, though some patients feel tired so we will plan for lots of in-bed activities, aka watching every movie the hospital has to offer.

8 comments

  1. Wow! I know you as parents are going thru a lot with these appointments and procedures but I really can’t even believe the amount that Beaudin has to go through. It seems so unbearable to me. I’m glad his spirit is strong. Love you.

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    1. It’s interesting to consider who is going through more. God Bless a kids naivety. When Beau was diagnosed the doc said, “this will be harder on you emotionally than on him.” And I thought that was so insensitive, but now I see what he meant. Beau is so eager to trudge ahead, and isn’t weighed down by all the “what if’s….” that are so hard for Josh and I. I am glad that he is able to trust us, and his team, so deeply that he can be brave and strong, and we can hold all of the unknowns. xxxx love you.

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  2. Gods blanket of peace be wrapped around you and Beaudin on Thursday. Lots of prayers for Beaudin , you and the team!!

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  3. May gods blanket of peace and comfort surround you and Beaudin on Thursday! Lots of prayers for Beau, you and your family and your team!
    Love Kathleen

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