Always a Winding Road

Well, as I stated in my last blog it’s been quite the year for me. It seemed at the time that Joe and Lil we’re going to catch a break this year. Since my last post I had hand surgery to remove a cyst from a burn and emergency gallbladder surgery. Yeah, I’m done with 2018. I was scheduled to have back surgery to clear some space where the disc was pressing on the nerves, but after a recent mri it seems the problem is with the actual disc itself, not the pressing factor. Unfortunately for my that means more time, more tests and most likely a bigger surgery. We will see how that all plays out over the next month with tests and follow ups.

Lillian has been thriving. She adores school and is doing fantastic. Unfortunately, about 3 weeks ago she came down with a cough and high fever of 104.5. After testing negative for flu, strep and uti, her pediatrician ruled it as viral. After having these symptoms for 4 days, I noticed on Halloween that her breathing seemed abnormally fast. My neighbor who’s a nurse came and listened. Lungs again sounded clear, heart rate was slightly high but that’s normal with fever. We kept a close eye on her the remainder of the evening.

The next day, she began vomiting, spiked a fever and her breathing was extremely rapid. I put my mommy foot down and we went to the ER. Again, lungs sounded clear but respiratory rate was extremely high. Again, negative for flu and strep. So, they sent her off for an X-ray. Lillian has severe pneumonia in her right lung. Her lungs were extremely inflamed causing her severe pain. At this point she was lethargic and could barely keep her eyes open. She was also severely dehydrated making all of her kidney levels get wacky.

So, we were admitted. The next 4 days were a roller coaster. She didn’t eat for 3 days, the smallest movement made her scream in pain, labs were drawn 7 times, iv fluids, nausea . My poor baby girl was miserable. This time was different for joe and I. Lillian was in so much pain and so lethargic, she couldn’t put up a fight for labs draws, iv checks, blood pressures. She couldn’t even get out of bed or stand on her own. When we’re admitted for blood pressures and UTIs, she generally feels half way decent and wants to play and doesn’t understand why she’s being poked and prodded. This time, she couldn’t fight it.

It was heartbreaking, but not having to console her after holding her down for yet another lab draw, made this stay slightly easier on mom and dad. That sounds awful but it’s true. We all knew she needed that care without a fight.

Lillian was out of school for 2 weeks. It’s been just over 3 weeks since her diagnosis and she’s still in some pain due to inflammation and doctors expect her cough to linger for another few weeks. Her school was so amazing during this time. I received messages from moms, her teacher, and her school nurse regularly. Her first day back, when her classmates saw her walking down the hall they all screamed and ran up to hug her. It made this mamas heart so happy to see the love and support from her new school.

During all of this, we have been prepping for our 3rd Annual Hope for Lillian Grace Reindeer Run. I know, I know, our plates are always overflowing. Lillian is so excited once again this year. It’s amazing, as she gets older she is truly grasping what all of this means. That all of these people that sponsor, run, pray, share, and donate- they all adore her. Her spirit, her faith, her fight, her spunk. The other night she was praying before bed and she said “Dear God, please don’t make me hurt anymore” While this broke my heart, it also comforted me that she knows she can turn to Him. She was even talking to Him in her sleep that night. 😂

She’s a spitfire. And she makes this mama so proud.

If you have time, please share our story. We would love to beat last years race attendance!

 

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