It's day 14 which means it is the halfway point of steroids. Can we do 2 more weeks?! Her cravings have changed and it makes it a little bit more challenging being in the hospital. The hospital... looks like we will be here a while longer. Since the cultures were positive we have been waiting for the specifics of it all. We still don't have exactly everything, but we know it's probably staph aureus (good thing it's not MRSA). The on call pediatrician has been communicating with me and I wish it could just be Marsden all the time. I guess he doesn't want to work 24 hrs/day all the time! :) The vancomycin antibiotic should be killing the bacteria... but we won't know until the new culture that they just drew comes back in 48 hours. They also drew some blood from her arm to see if cultures grow from that blood as well. She was NOT happy. She knew what was coming and was pleading for no butterfly (the needle). Yes, it still breaks my heart when I have to hold her down while someone "hurts" my baby even though they are really trying to help. They also told me they weren't sure if she would be able to receive the vincristine on Monday due to this infection that she has. I am hoping she still can because her numbers are still ok and this chemo is not count dependent. I guess time will tell. Time... my worst enemy!
She has been asking to leave and to go to Grammy's or the Stevensons. I think just anywhere but here! We have been trying to keep her entertained.. Tabes bus (Tavia) came by with smoothies and some sweet drawing skills. Drawing ballerinas... weird! We decided to draw family members. Grammy's picture was a request and an EXACT request from Taleah (which comes with a side note).
Side note... Taleah is very observant and listens to everything/everyone. She overheard Teeny (a few months ago) telling my mom that she had "saggy boobs"... probably not the exact terminology I wanted my 2 year old to use but she heard it... and then repeated it. Of course everyone laughed so it is now engrained in Taleah's mind. She says Grammy has saggy boobs which explains the picture of Ballerina Grammy with "saggy boobs". Don't judge me... or her... let's blame it on Teeny! :) And I guess Tav for drawing it for her!
She also has an obsession with telling people they have stinky arm pits. Bizzare I know. This girl has quite the personality and I will soak it all on (especially today). We drew lots of people/ballerinas with stinky arm pits including Teeny, Uncle Paul (pumpkin), Chloe, Tay Tay and Izzy. This lasted for about 20 minutes and she was tired again.
She seems pretty tired today but much more herself than I have seen in a long time (2 weeks but feels lilke forever). I have received some smiles that mean more to me than a lot of things. Who would have thought that a simple smile from your child would feel so good.
She has not been running a fever for almost 2 days. Her labs were pretty good considering... WBC 1.8 Hct 29 platelets 115,000 ANC 1200
Go away infection. We want to go home!
yay for her cute personality.. i am so not kidding taleah reminds me so much of kinsey (michelles little girl.. chelle says it too by reading about her on your blog) anyways, we are praying with you for good results to go home! love the "side note" story :) miss you
ReplyDeleteJust wanted to drop you a quick line to tell you that your little girl is BEAUTIFUL! I am so impressed that you are blogging so diligently through your trials. I think it is so important to soak in every moment you have together and you are doing an amazing job doing that with your little ones. You don't know me but I'm a mom of 3 and I'm rooting for you and Taleah! Best wishes for a quick recovery. Stay strong!
ReplyDeleteOh my goodness! She is so freaking cute! She makes me laugh.
ReplyDeleteI'm sorry you guys are still there. Time in the hospital moves so much more slowly. So. Much. You may be there for only a few days but it seems like months.
I'll be thinking of you guys. And hoping you'll be out of there ASAP!
Dang! I'm sorry you are in the hospital again! I have a friend out here who's daughter is on steroids right now as well. It sounds like Taleah and Drew are acting exactly the same. I am so glad she is half way! So many prayers and hugs coming your way!! Love you!
ReplyDeleteHoping you get to go home tomorrow! Loves and hugs. (Wish they could be real ones). Living a half hour away has never felt so far away before!!
ReplyDeletehahah Love the saggy boob picture! I'm glad she's able to laugh and have fun people to be around through all of this. Hoping you get good results!!
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