Today is Sunday 4/22 we have been here for a week today. We have another 8 days to go.
The Upper GI went well. Her tummy looked much better and the blockage and bowel had completely corrected itself. I guess that it was so blown up due to the amount of stool impacted inside of it.
We decided to get her a PICC line the next day to avoid anymore trauma while being in the hospital. She is getting daily IV meds and a regular IV would not last our entire stay. It was scary letting them put her under but she did well.
Ayla has been going to the bathroom (pee) quite often and while we were here they did a diabetes study where they randomly took her blood sugar and ended with a glucose test. She passed so we don't have to worry about CF related Diabetes just yet. There is a little boy who is 10 next door to us with CF and it looks like he may have it.
These kids undergo so much dealing with this disease. Right now there are 5 kids with CF in the hospital here. They are mostly in for tune-ups there was another little girl obstructed like Ayla.
I found out the type of fungus Ayla has grown in her lungs was Geotrichum Species. It's a dangerous type of mold and the treatment could be even more dangerous b/c the meds are very tough on her liver. Having Billiary Attresia her liver is already at risk-so they want to rebronch to make sure it's there and necessary to treat. From what I have read it doesn't sound very good. I am praying that when we retest, it will not be there.
Ayla is feeling much better now-getting very antsy being cooped up inside and over the next week it's going to get worse! Hopefully we can find ways to keep all of us sane!
My mom and Larry have been taking turns staying here and at the Ronald McDonald House so we have all been taking turns keep Autumn and Ayla. I am still nursing so it's been a little challenging. But we are managing quite well.
Before we leave here the Doc is going to talk to us more about the mold and what we need to do. Until then it's going to be days full of eating, doing Chest Therapy, and Physical therapy and IV meds...and trying to keep her as busy as possible!
Thank you to all who have prayed for our little girl. She is so strong! At times too strong...It's hard being here and seeing the ages of the other kids and thinking about what her future might look like...but for today we will just be glad for today...
6 months ago