Now that we're off the chemo treadmill it's "all aboard" the nausea racer with all its ups and downs and twists and turns.
As mentioned in previous posts, she's not a fan of Zofran, Kytril or any of the other anti-nausea meds and I for one can not speak for their (non) effectiveness. I can only go by what I see... and what I see is Emmah wanting to just jump to the finish line and not take the steps needed to get there. It's easy enough to do for any of us no matter the circumstance. If ever there was a time to make that leap though it'd be now. I'd say that she's earned it... I just wish I could carry her there and not have her have to do it herself. Ahhh, and now we see the problem... she has to do it herself. She was doing well... and she still is... it's just the stepping has slowed and there's a lot of standing around gazing in the direction of said finish line.
I can only imagine what it's been like... after all she's still a child fresh off her 11th birthday and I've only experienced it vicariously through her. I have tried to strike a balance of what is perceived as medically helpful and what is mentally helpful to Emmah's state of mind... and let me tell ya, it ain't been easy. Obviously some things have to be taken... and they have... but I usually back off and let the staff do the dirty work or be the bad guys since I still have to go home and live with her. A side note... the staff at Hope and CMH have been great and have (for the most part) let us call the shots regarding what she does and doesn't have to take. That being that there are things that are considered helpful and thus optional and we were never pressured into taking them... so kudos to both staffs.
The eating has fizzled to a stop... actually, it's more like she wants to take flight instead of crawling to run and running to fly. She wants to bypass the blandness of crackers (and the like) and go right to the hard stuff... Spaghettios. My pleas of taking it slow fell on deaf ears... she wasn't having any of it. So the other night I obliged and made her some... half a can of which she ate half that. We got the chance to see it again a few hours later. She then was saying that she wanted a Pizza-Hut personal pan pizza. Huh? I said that from here on out, we need to slow down a bit. She agreed, but I know she doesn't want to. She was doing better... in my opinion anyway... when grazing on crackers all day long, but who can blame her for not wanting to make it a staple of her diet... even if they are Club crackers? I'm pretty certain that the body will tolerate the crackers, it's the mind that wants more.
She's had few other incidences of hugging the pink tub since coming off the chemo and she's put herself back into the Ativan/Benardyl mindset. Getting her to eat anything from here on out will be a challenge. Somehow though, I did manage to get Zofran in this morning... right before her Ativan and I know that she will "blame" the feeling better on the Ativan and not the Zofran... I think the Zofran does do something, but it is limited in what it can do.
Okay, I started this post this morning... as the day's gone on, there's been some change. Her throat is sore, no mouth sores yet... just the throat. We were told during the first rescue that they look for what they call an engrafting fever. Perhaps it's on its way... she had a temp of 100.00 but the next one was back in the normal range. The fact that she had one at all... to me anyway... is a good sign. Generally fevers are not a wanted thing, but in this case, it's a sign that the cells have landed and are seeking residence... provided it doesn't get too high. Whenever she spikes a fever of... hmmm and I should know this by now, but I don't recall, I think it's 101.5... they have to draw labs and get it cultured to ensure it's not an infection. If that is in fact the case here... that's it's an engrafting fever... then she's on about the same schedule as the last rescue.
I know I've said this about a thousand times already... so once more won't hurt. I will be glad to get this over and done... to put it behind us never giving even so much as a sideways glance back. She's using the suction tube again since it's hurting to swallow, but it's nothing like the last time. She's also requested morphine again... not on the PCA... so it's not a constant feed but just on a need be basis that she's getting. She's spent the better part of the day in a drug induced sleepy state... sad to see, but if it helps her get through, then that's what we'll do.
Until the next time I'm feeling "inspired"
1 comment:
Well you knew the roller coaster ride was coming! It's normal for her to want to bypass the baby steps and go for the leaps and bounds....I know, I've been there, but hang in there, she will come to the realization herself (if she hasn't in fact already done so)of what she needs to do to accomplish the long range goal. Give her a hug and kiss from me...Luv ya, Mom
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