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| Sam's new "sidecar" running all the meds |
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| Machines delivering meds to Sam as she rests |
Keep on keeping on....
Tuesday, April 8, 2014
More Access - Day 2
So on the last post, I mentioned how even though Sam had a "double lumen" picc line and a g tube, she does not have enough access to get in the crazy amount of medications she is on round the clock . Her chemo usually runs over five to seven hours per day and her pca for pain is continuous. Both of those take up a line so getting in her several other antibiotics every four hours, anti nausea meds, steroids, and pre meds has become an issue. In two days she will start cyclosporine and more medications running 24 hours continuous to help decrease her body's rejection of engraftment of kaedens marrow. Many of these can't be mixed lines with other meds blah blah blah....SO....
This morning she was surgically given a second picc line in her other arm. It went fairly well and we are upstairs now and have started her chemo for the day. Tomorrow is her last day of ATG. She has had very bothersome itching in her diaper area and a bright red rash with diarrhea. We aren't totally sure what this is from but the doc's best guess is her skin is just breaking down very easily all over because of her low white counts and her body is excreting the "poisons" of chemo and all the other things going into her... She gets Benadryl, steroids, and Ativan for this...
Kaeden will have a pre surgical tour tomorrow afternoon and get to ask questions he is nervous about. We have kept him home from school this week to limit exposure to germs etc. Early Thursday morning he will arrive at the hospital for his bone marrow extraction procedure. He will be under general anesthesia for approximately 2 hours while they do about 20 to 40 needle insertions in his back hip area to extract 200 to 250 cc's. He will remain on the outpatient clinic floor most of the day recovering and may be allowed to sneak down to Sam and I's room for a bit. It is difficult for Brandon and I to work out meeting both kids needs on that day as their procedures will be different floors etc. Baba, uncle Kurt , and aunt Bex will be here so there will always be a loving family member near, but as Mommy and Daddy you ideally want to be at both places at once because they are both our babies!!!
Keep on keeping on....
Keep on keeping on....
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How is she doing being isolated? How are you holding up in that room? Is she just pretty wiped out so not needing to move around too much? As always, xoxoxo to all of you!!
ReplyDeleteWOW!! That is quite the set-up! I was wondering the same things as Shannon. How much of the day does Sammy sleep? What about her tugging at all these lines? I imagine it has gotten increasingly challenging to cuddle with her with so many IVs - do you sleep in a bed beside her?
ReplyDeleteThanks for the updates, Stac. I am just daxed by what you guys are experiencing.
She hasn't walked in 11 days and prefers to just be in bed. Some days she sleeps more than others depending on what meds she gets when. She sometimes thrashes around in bed and gets all tangled in her lines but this has gotten somewhat better. Her legs are very weak and she is wobbly even when I support her briefly in the bath etc. Will need physical therapy for sure to get back to her linebacker status that she was at before all this :) I am almost always in bed with her so I may need some too! Depending on her level of pain or anxiety at the moment, she will let me get up, shower etc. As long as she can still see me and I don't close the door
DeleteShe will just pat on the pillow next to her and whimper "mommy" when it's been too long that I've been up:)
ReplyDeleteHonestly the isolation isn't driving me that crazy. There is always someone coming in and out, my mom and Brandon rotate coming daily, and in a way it's very busy. The truly hardest part is not getting to see kaeden when he wakes up, make him lunch, put him to bed etc. All those mommy things for him I miss terribly.
Just seeing your replies! OMG, she pats the bed and just wants you to lay with her! That is sooo sweet and so heartbreaking, too. You are her rock and her proof that things are ok and truly her best and most favorite medicine. When all is said and done, this experience will be so meaningful for you, even though there are many things lost along the way like those very "normal" encounters with Kaeden and the rest of your fam. Lots of tears being shed every time you post. You are doing such a great job, Stac. (And Brandon, and Kaedan, and Mama Spenc, and Kurt, and EVERYONE ELSE). <3
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