Thursday, September 11, 2014

Update...

We're still here in the hospital. Both Lilly and I are going a little stir crazy. Lilly's pancreatitis definitely got worse before it got better. It's a slow process. In the first couple of days she gained 8 lbs from retaining so much fluid. She was in horrible pain. Lilly had to be on oxygen. She had so much pressure on her lungs from the swollen pancreas, that she couldn't take a big enough breath. They put her on a PCA pump of morphine. It's a continuous drip of morohine and she also had the option of pushing a button and giving herself and extra boost if she needed it. She also got TPN and lipids once a day to replace the food that she was not eating. The first couple of days she just laid in bed and slept the day away to try and not think of the pain. It was awful to see her like that. Pancreatitis is something that just has to heal on its own. There's no magic medicine that can be given to fix it - and it's no fun! Last night she was feeling great! She was painting nurses nails, teasing, laughing... It was fabulous. But, through the night she did not sleep well at all. She has a blister that's developed on her lip and it's painful and it drove her crazy all night. This morning, the doctor checked in her mouth and her mouth is covered in sores! :( Mouth sores can be a complication of certain chemos, but she's never had mouth sores before. Ever. So, it's weird that she's started with them now. They're testing her for a virus, but have already started her on the anti-viral medication to get it in her system. And, on top of all that, her tummy started hurting really bad again this morning! I kind of feel like we're taking three steps back instead of progressing to get better. They are testing her for C-Diff. It's a bacteria that some cancer kiddos get that makes their tummies crampy and they have severe diarrhea. (Sorry TMI) We're still waiting to hear results back from that test too. But, the good news is she's off the morphine. She's taking oxycodone for the pain and it seems to be helping. Plus, she can go home with oxy, but not morphine. She's also off of all her fluids. She's drinking a lot on her own, and she's eating a little bit, which is an improvement from days past. Our goal is still to go home tomorrow, but we'll have to see how our day goes. 


We shaved Lilly's head again. After her last round of chemo on Friday, it started falling out like crazy. It was itching and driving her nuts... But, she's excited that this will be the last time she loses her hair. (We hope)


Lilly's pediatrician stopped by last night and we had a nice visit. Lilly asked him if she could paint his nails!?! Dr. Bosworth has NEVER had his nails painted before - so it was fun for Lilly to get to be the first one to do it!!! It made Lilly's night! ... and his! LOL

6 comments:

  1. Oh sweet girl!! We'll say an extra prayer for all of you!! Love you

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  2. Thanks for the update. Sure have been thinking about you and praying for Lilly to feel better fast. I hope you can go home tomorrow too!

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  3. So sorry to hear that Lilly is still in the hospital and having so many different things going on. I have a friend who's son was diagnosed with CDiff. He was very very sick and had to return home from BYU and delay his mission. After 2 years of fighting it they tried something that is new... a fecal transplant. Yes I said POOP. His little brother donated it and they transplanted it into his body. Completely cleaned out all the bad stuff and replaced it with good. Sounds gross but IT WORKED! It was a miracle. He just left for his mission to Sweden. I hope that is not the case for Lilly. Praying for her. She has been through way too much! Really hope she gets to go home soon! Love and Prayers always.

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    1. Sherrie, I'm pretty sure this is not the same as what you just described. She's already had it once before and took antibiotics to get rid of it.

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  4. So sad to have Lilly go through so much this time around. Hopefully she will get feeling better really soon and get to go home. Love her mohawk, it looked good on her. Lilly you are such a strong and brave little girl who will beat cancers butt. Love you so much, hope to see you soon.

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  5. Hi there. I have been following this blog for a few months. I found you from a link from Michalla's blog. I was wondering if it would be OK to sponsor an awareness and fundraising event for Lilly? I have a big following online (you can look me up on Facebook by searching Sierra the Barefoot Girl or look up sierrathebarefootgirl.com) and someone recently suggested to me that I sponsor a barefoot day. I was thinking maybe I could do this in connection with showcasing this blog and have a link to donate to Lilly's care and Millie's Princess Foundation. If you would like to discuss the logistics of this, please let me know! Praying for sweet brave Lilly!

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