We made it thru the 1st two days of treatment, which if you count hydation and the other IV meds was about 36 hours of IV 'treatment'. This morning lily was sedated so her stitches on her leg could be removed. We were awoken at0600, which isn't terribly early unless your last wake up call was just 2 hours prior. Lily starts the no owie chant. As we are going down the hall we get a call that they are not ready for her and to delay for a half an hour. We move into the playroom and lily is still working herself up. I am feverishly trying to calm her, last night she got so worked up about taking medicine that she ended up throwing her meds right back up. She starts hiccupping. I look for something to catch the inevitable...too late. While one hand is failing to catch puke, the other grabs a toy construction helmet. It'll have to do. I get her taken care of and they are ready for her downstairs. We get the sutures out and we head back upstairs. Lily is fairly punky and we have several doses of meds to catch up on. The problem is that she can't get oral meds down without throwing up. We've exhausted the usual tricks and she's even refusing ice cream. Julie walks into the room and lily declares that she does not want to take medicine forcing Julie to spend the next couple of hours NOT getting her to take medicine. Lily gets about 7 new beads, coloring pages, books and when they take vitals her blood pressure is through the roof. She gets some happy juice(IV of course) in hopes of getting her to take her meds. She is completely goofy, consumes julies potato chips , my chips and when we sneak in meds, she pukes on Julie's hand. And this is what happens every time. There has got to be a better way. Lily is smart and Wiley and keeps the staff here laughing. Like when she was passing the nurses station and she was being complemented on her purple dora robe and matching slippers . Lily grabs each side of the robe and flings it open, no shirt, no PJs... Yep she flashed the entire staff. That's our lily. She's resting now until the next round of meds in an hour. So much more to share , so little energy. Thank you for all the support. Every gift, meal, card, kind word helps. It's gonna be a long year, but we can do this.
I am in awe that with all you have been through in the last 36 hours, you have managed to make this post about how Lily's first round of treatments have gone. What a trooper she already is and you too -- the picture of her sleeping with her quilt brought tears to my eyes. I know getting a toddler to cooperate is so hard and you are doing it knowing it won't feel good for Lily, but all of this is necessary for Lily to get better. It must be so agonizing because she is smart enough to know that the treatment makes her feel bad, but can't grasp that it will make her feel better down the road. I wish we could speed this next year up for you and Lily. But know we are thinking of you so much!! A BIG hug for you today from Las Vegas. Thinking of you!
ReplyDeleteHi honey. I love you very much. Lily looks like an angel in the picture. Hugs, Mom
ReplyDeleteIt always leads me back to the quote from my mother-in-law about how to eat an elephant...one bite at a time. You made it through yet another BIG bite, my friend. Our thoughts and prayers are with you every single step of the way. Just wishing we could be there to walk those steps with you... Love you!
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