This one we saw coming... Leah had not been feeling good for a while, so we were pretty sure that we were headed for a hospital stay. Late Sunday night, Leah was admitted into the hospital for a cystic fibrosis exacerbation. We expect Leah to be hospitalized for a full two weeks to complete IV antibiotics and receive increased respiratory treatments. After looking at her x-ray and seeing the drop in her pulmonary function, doctor was glad we brought her in when we did. We are hopeful that the hospital treatment will help decrease some of the inflammation in her lungs, clear out the extra mucus, improve her lung function, and help Leah to feel better.
As you may remember, Leah has been in the continuation phase of her NTM treatment for m. abscessus. She has been on three oral antibiotics and one inhaled antibiotic since March 2017. Doctor decided to administer the three oral antibiotics as IV antibiotics while in the hospital. However, we needed to stop the inhaled antibiotic due to continued hearing loss. Up to this point, her hearing loss had not been in the language sounds. Unfortunately, her latest auditory test showed hearing loss in the lower language sounds.
While Leah continues to feel a bit crummy, she has been in pretty good spirits. Even as she does her treatments, she likes to have fun and play games. Since Respiratory treatments take a while, she has been playing games, doing card tricks, or having play-do wars with her respiratory therapist. They each create something from a given theme and then they try to guess what the other person made. It can be quite amusing.
Can you guess what movie these play-do creations represent? (Hover over picture to find out answer!)
People often wonder if Leah gets bored in the hospital... well sometimes she is bored, but her days are quite full. They want to keep her up and moving during the day. Between four respiratory treatments, IV medications, Doctor and nurse check ins, Physical Therapy, PFT (Pulmonary Function Tests) on M,W,F, Child Life bringing in games and crafts, Music therapy, and eating meals/snacks... she is quite busy. Today, she also had a visit from a magician and we got to take a quick walk outside in the sunshine.
I also picked up her school work today, so we can add that into our schedule. Thankfully, Spring Break is next week so she will only miss one week of school. That should make it easier to get her caught up on what she is missing.
We appreciate your prayers for Leah and our family. Although we have learned some helpful lessons on how to navigate hospital stays from our past experiences, that doesn't mean it is easy. And sometimes, Leah refers to the hospital as her second home :( But we are thankful for a place with great doctors, nurses, and staff that care for Leah and our family. If you want to send a note or picture to encourage Leah, you can reply in the comments or send us an email.
Leah is super excited about rallying the troops for Great Strides this year! Please check out this video she made and edited!! GO TEAM!!!
This is the ninth year that Leah's Front Line has walked in the Great Strides walk. This year we will be walking in the South Suburban Great Strides walk on Saturday, May 12 at Commissioner's Park in Frankfort.
Please consider joining us!
We think of our team as being on the Front Line next to Leah, helping her fight this battle against CF! Whether you walk, talk, or look at the clock.... we want you to be part of her special day ;)
To join our team or donate, please go to:
Even if you can't physically join us, here are some of the other ways you can get involved:
We will keep fighting to add more tomorrows for Leah and everyone living with cystic fibrosis! Will you join us?
We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows.