Leah came home from the hospital late Monday. It is nice to have us all under the same roof! Please pray for us as we transition home. We met with home health to get Leah's IV medicine set up at home. We are working on getting home bound instruction started with Leah's school. We appreciate all your prayers and cheers as Leah continues her NTM treatment at home!
We wanted to say a BIG thank you for all the support you have shown Leah! She has felt great love and encouragement from all the notes, videos, pictures, and visits she has received! On her hospital room door she has an encouragement sign from her CF Care Center Team. They are the best! We love them.
Leah has been taking her medications like a champ. She seems to be adjusting and handling the medication well. Her port site is still a bit sore, but is starting to heal. We expect to be discharged on Monday. We will continue her IV/oral medication regimen at home.
Leah got to go outside for a little bit this afternoon and enjoy the spring like weather while visiting with her cousins. We took a walk by the Ronald McDonald House across the street from the hospital.
Thank you so much for all your prayers! We are blessed to have so many praying for Leah and our family as she tackles this NTM infection.
Leah's been singing Fight Song this weekend, thinking about making up her own fight song, knowing she is getting ready for a BIG fight!
This is my fight song, take back my life song, prove I'm alright song
My power's turned on, starting right now I'll be strong... Cause I've still got a lot of fight left in me
Here we are... ready to tackle the NTM infection that has no business being in our little girl. To do this, Leah has to be strong and courageous and ready to FIGHT. It is going to be intense and very hard on her body, but it has become clear that it is time to begin treatment.
Although Leah has cultured the NTM (Nontuberculous Mycobacteria, M Abscessus) since April 2014, up to this point there was not enough evidence indicating an active infection to begin treatment, as the treatment is very intense and taxing on the body. But since her pulmonary function dropped significantly in October and did not improve with treatment of the typical CF pathogens, which included three weeks of IV antibiotics, along with other clinical symptoms (increased cough, fevers, not feeling well), doctor strongly recommends beginning treatment at this time.
Recommended treatment for M. abscessus pulmonary disease in CF involves two phases:
We begin treatment this week. On Tuesday, January 17, Leah will have a central line port placed and be admitted into the hospital to begin the initial intensive phase of treatment. We expect to be in the hospital for probably about a week as she begins her IV antibiotics to monitor how she handles the different medications. We will continue the intensive phase of IV medications at home, with close monitoring/testing for culture response and drug toxicity.
We are still not sure what this means for her schooling during the initiation phase. We are considering homebound instruction or partial days, depending on how the medications affect her and what the treatment schedule allows.
As a show of support, would you take a few minutes this week to let Leah know she is not alone in this fight. Maybe....
And please pray!! Bottom line is we are desperate to see God's hand of healing move and restore Leah's health. Our family has witnessed first hand God's miraculous healing this year... and we are on our knees praying for a another miracle of healing for Leah. This is a very serious infection and is known to be highly resistant to treatment. Please join us in praying for the medicine to be effective and eradicate this infection from Leah's lungs. Please pray for our faith to be strong and our trust and confidence to be firmly in God as we go through this time!
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.