Sunday, July 28, 2013
After 4 xrays over the last month....persistent coughing while Zoe is sleeping...she's sooooo tired. She went to her CF Dr on Friday. They repeated another chest X-ray. Dr. came in room saying he was going to give Zoe a manual on how to make a lung xray look better...it was a joke....but I knew that meant her xray wasn't better..
He then proceeded to tell me that her Atelectasis (collapsed lung) is worse. Not good news. He then told me we needed to do a sedated Bronchoscopy. This is a bit scary due to the collapsed lung.
So, tomorrow morning we will be at the hospital at 6:30 am....checking in for her procedure. If you don't know what a bronchoscopy is...please google it....
We really appreciate your prayers, thoughts, love, etc.....
Take care of You and Yours!!!
Monday, July 1, 2013
The CFF Great Strides walk was a success! There were many supporters for our little Zoe. Bonefish Grill brought their Zoe for Life team...it's always so wonderful to see their smiling faces...we love them all!!
My brother, Andrew, his wife, Courtney and their 3 children made a surprise appearance all the way from Tn.! Had a few tears shedding with that!
Zoe started getting sicker again after the last post in May...the Omnicef and Prednisone helped temporarily. Then they tried oral Bactrim...she just got worse. By the weekend of June 9th, she was unable to participate in swimming or her martial arts. Her cough was bad, she was tired.
Tuesday, June 11th, her Dr wanted to see her. When they checked her O2, it was only 93. Her O2 is almost always 99/100. Number 1 reason she was so tired. Then it was time for her pfts (pulmonary function test). Her best pft in the past year was 106%, it was 59%, that is a huge decrease in lung function. Then her Dr listened to her lungs: Crackles and full of mucus. Time for an xray and direct admit to Wolfson Children's Hospital. She was admitted on IV Cefapime and 3 breathing treatment/chest physiotherapy sessions a day.
On Day 5 of the IV Cefapime she broke out in hives. They discontinued that IV med, started IV Zosyn. She broke out in hives again the next night. Her Dr. switched her to a complete different family of drugs. She started IV Tobramycin and IV Cipro, with a 5 day course of Prednisone. Her cough wasn't getting better yet.
Then came the night that was very scary for us...her O2 dropped to 91 and stayed that way. There had to be a reason for this sudden decrease in O2. Her Dr. ordered another chest X-ray that day. When he came in our room at 5:30 that day to discuss her X-ray...I knew it wasn't 'good' news. She had a condition called Atelectasis (partial collapse of lung).
We discussed what needed to be done. She would be doing 30 minutes 3 times a day of her vest (chest physiotherapy machine) and 10 cycles every hour of a spirometer. Hopefully that would 'open' her lung back up.
Thank God it worked! Her O2 went back up to 94/95! We were so happy and grateful...there were a lot of people praying for our sweet Zoe.
It was a long 10 days in the hospital with many ups and downs! She is a fighter though! She was released to go home on: IV Tobramycin, IV Cipro, an Epipen, Prednisone, 3 times a day breathing treatments and CPT, and a home O2 monitor.
She is presently still doing IVs. She still has some coughing going on. We are praying for this to completely go away and allow her to have a carefree summer...
Cystic Fibrosis is a fight. A daily fight. Zoe has never missed a single treatment since her diagnosis at the age of 1 yr. It's not an option in her life...it is just the way it is. This hospital stay showed us how quickly CF can raise its ugly head. We will battle on.
Take care of you and yours....
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