He did a sweat test on Abby to test for cystic fibrosis, a chest xray and reviewed her sleep study. The sweat test was at the highest edge of normal. I have read that there are times when a child with milder cystic fibrosis can test high normal. Her values maybe high because of one of her medications. I know there are several mom's with CF kids who are praying for Abby. Any thoughts?
Does Abby have symptoms of milder cystic fibrosis? Sure but they can be caused by many other things. Am I worried about cystic fibrosis? Honestly, no. Her new doctor is watching her closely and will let us know when it is time to be concerned. We are dealing with enough "real" things without worrying about what ifs. God is watching over our precious daughter, loves her completely and will never leave her. God is always good.
Abby's sleep study showed 30+ episodes of apnea during the night. One time she quit breathing for over 30 seconds and her oxygen dropped significantly (70s).
He said that he hopes her central apnea will resolve when she is finished with chemo but he gently warned that it may be from brain damage from the chemo. Not what I wanted to hear but I appreciate the warning.
He is giving Abby a rescue inhaler, an inhaled steroid and putting her on a pulse/ox at night. The pulse/ox will monitor the amount of oxygen in her blood and alert us if it drops to dangerous levels. I will feel much better when our insurance approves her pulse/ox.
We have had a lot to think about and process lately. Hopefully, we will be able to step back and enjoy our weekend with our kids.
Thanks for all of your encouraging comments and prayers.
Abby dancing with Hannah and Kristin at the art show.
14 comments:
Yay for the pulse/ox!!! I had triplets who were 6 weeks early, and they sent all three home with one. The company even set it up so that there were different tones for each.
I slept MUCH better knowing that they were safer. Although the alarm would sometimes go off for no reason, I would rather have that than a child who stops breathing. :)
They are now 4 and two of my girls still need it. The other had no episodes (but she got one because the doctor knew it would help me feel calmer :)
Praying for your family.
Thanks for the update. Keeping Abby (and you) in my prayers. I am glad that her doctor is a believer. I know that is a weight off your shoulders too, to know that her doctors are on the same page spiritually.
Brent,
My son Gavin (age 13 months) has Cystic Fibrosis...there are a few blood tests, signs etc that I can talk with you about if you'd like. Sometimes genetic carriers of the disease have high sweat test results too.
Just shoot me an email! jenvanderpool@yahoo.com
Paraying for each of you. The girls look beautiful. Thanks for the update. Hard to hear but gotta hear it so better sooner than later.
Hugs to you,
Mary Ann De Martin
sure wish we were stationed closer to ya'll.
Big hugs and prayers keep on coming!
If you need a giggle...check out my blog post today. Honestly...out of ALL the children in the world... God chose China to send us...and out of all the children who needed families in China...He gave us Josiah. I told him today that he's a pill. He said "I is NOT a pill, dat is just wrong" LOL So I said you are something else buddy! And he said, "I is NOT something else either Mom. You are just weird today!"
God help me!!!!!
love,
Holly-Purpose Driven Family
We continue to rest in prayer for Abby....her sweet spirit just shines through all her pictures!
Praying for amazing Abby and your family. Believing God for His healing.
Glad to hear that you have another wonderful addition to Abby's medical team. Praying for wisdom and guidence for every decision.
Love and hugs and prayers,
Debi
I will keep praying and praying. We are inundated with medical bills from our daughter's 9-day stay. I can't imagine yours. Praying that the insurance company will pay for the pulse/ox and all the things to come. Praying for big, miraculous healing for sweet Abby.
Much love,
Amy
thank you for the update, I am so glad you got some answers, even if it brings up more questions
My cousins were on that monitor...saved their lives on many occasions. Glad to hear that you have a wonderful doc on your team!
Thanks for the Abby update. I hope you have an enjoyable weekend with the kids, too. Still praying for you all. Love and prayers, Ms.Kathy in GA
Thanks for the update:o) My goodness you have some pretty girls!
Praying!!
AWWWWWW...I wish Kya Blu was in thaat picture with three of her FAV girls!
Love and miss you guys
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