Zoe for Life.... Our journey with Cystic Fibrosis....
Wednesday, May 4, 2011
Surgery, family and Great Strides!!
Sorry it has been a while....things have been a little crazy around here.
After Zoe went off of iv's, we went to her ENT Dr. to see how the CT scan of her sinuses was after the round ov iv antibiotics. Unfortunately, her sinuses are packed with the famous thick, sticky, cf mucus.
She is scheduled for 2 sinus surgeries, the first is May 17th (which happens to be my 45th bday). This surgery will take a couple of hours and she will be in the hospital for a couple of days.
Please pray that all goes well with anesthesia and the surgery procedure. Last time she had sinus surgery, she had a problem with her O2 dropping down into the 60's....quite scary for us. She required oxygen until she was able to hold her own.
On a good note...my parents, all of our adult children, and some of my siblings were able to have a get together here at our home for a few days! It was lovely!
My parents have now left to go back to Tn. with 3 of our kids in tow for a few weeks! It sure is a quiet house around here. They love to go spend time at Grandma and Grandpa's house in the mountains. They climb the mountains, ride the horse, play with their ducks they raised last time they were there, help them with their garden, and just have a fun time with them! It is awesome to me that they get to spend special times like this with their grandparents!
Our Great Strides walk for Zoe was last weekend. Team Zoe for Life received the award for raising the most money....2 years in a row now!! Yay Team Zoe! We couldn't have done it without all the people that helped raise money and the people that donated to our cause!
Thank you all!!!
Take care of you and yours.....
Jada
After Zoe went off of iv's, we went to her ENT Dr. to see how the CT scan of her sinuses was after the round ov iv antibiotics. Unfortunately, her sinuses are packed with the famous thick, sticky, cf mucus.
She is scheduled for 2 sinus surgeries, the first is May 17th (which happens to be my 45th bday). This surgery will take a couple of hours and she will be in the hospital for a couple of days.
Please pray that all goes well with anesthesia and the surgery procedure. Last time she had sinus surgery, she had a problem with her O2 dropping down into the 60's....quite scary for us. She required oxygen until she was able to hold her own.
On a good note...my parents, all of our adult children, and some of my siblings were able to have a get together here at our home for a few days! It was lovely!
My parents have now left to go back to Tn. with 3 of our kids in tow for a few weeks! It sure is a quiet house around here. They love to go spend time at Grandma and Grandpa's house in the mountains. They climb the mountains, ride the horse, play with their ducks they raised last time they were there, help them with their garden, and just have a fun time with them! It is awesome to me that they get to spend special times like this with their grandparents!
Our Great Strides walk for Zoe was last weekend. Team Zoe for Life received the award for raising the most money....2 years in a row now!! Yay Team Zoe! We couldn't have done it without all the people that helped raise money and the people that donated to our cause!
Thank you all!!!
Take care of you and yours.....
Jada
Wednesday, March 23, 2011
Off of Iv's
Zoe finally is finished with her 3 weeks of iv antibiotics! Yay! She was very happy to be free of her picc line.
The girls went back to gymnastics last night for the first time since Zoe's hospitalization. They were very excited! Poor Zoe could not finish her running warm up due to being so out of breath. It was sad. Hopefully after a couple of weeks back...she will be able to. She goes back to see her ENT doc on the 11th to see how her sinuses looked in the ct scan taken at the hospital. Hopefully they are ok and she won't need sinus surgery anytime soon.
CFF Great Strides fundraising time is here! Hopefully team Zoe will raise even more money than last year!!
Take care of you and yours.....
Jada
The girls went back to gymnastics last night for the first time since Zoe's hospitalization. They were very excited! Poor Zoe could not finish her running warm up due to being so out of breath. It was sad. Hopefully after a couple of weeks back...she will be able to. She goes back to see her ENT doc on the 11th to see how her sinuses looked in the ct scan taken at the hospital. Hopefully they are ok and she won't need sinus surgery anytime soon.
CFF Great Strides fundraising time is here! Hopefully team Zoe will raise even more money than last year!!
Take care of you and yours.....
Jada
Friday, March 11, 2011
Zoe health update....
Thank you for all the good well wishes. Unfortunately, Zoe's pft's are even LOWER than before hospital. Sooooo, one more week of iv's. 79!!! I was quite shocked. And saddened. I have being doing research on bronchiectasis since she has it now....I've been discussing the fact that Staph seems to be a bacteria that directly causes it with her docs...so, how come we don't treat it if there are no symptoms at the time of culture?? Zoe cultures Staph a lot, has since 2007. I think we need to change protocol. Sad day for me...I thought it would be years before I saw pft's in the 70's in my baby girl. CF....you've got a battle on your hands now!!!
Sunday, March 6, 2011
Hospital Update...
Zoe came home Wednesday evening! Yay! She will continue doing another 9 days of home iv's and checking her blood sugar levels. Hers were high in the hospital. Endo was super nice though and gave her a pink blood sugar testing monitor, super cute.
She was so happy to be home with her siblings and Lilly, her puppy!
Her ct scan did show that she has Bronchiectasis now. We weren't too happy to receive that news. We are doing all the nebs, without fail, she has never missed even one....so the other thing they added to try and help is MWF Zithro.
She is also doing Nasonex as a neb now. It has it's own machine...supposed to work better than the nasal spray.
Sinus ct still scheduled for the 11th, then consult with ENT to see if sinus surgery is needed. I hope we can wait a little longer. We will see.
Thank you for your thoughts and prayers for our little Zoe.
Take care of you and yours....
Jada
She was so happy to be home with her siblings and Lilly, her puppy!
Her ct scan did show that she has Bronchiectasis now. We weren't too happy to receive that news. We are doing all the nebs, without fail, she has never missed even one....so the other thing they added to try and help is MWF Zithro.
She is also doing Nasonex as a neb now. It has it's own machine...supposed to work better than the nasal spray.
Sinus ct still scheduled for the 11th, then consult with ENT to see if sinus surgery is needed. I hope we can wait a little longer. We will see.
Thank you for your thoughts and prayers for our little Zoe.
Take care of you and yours....
Jada
Saturday, February 26, 2011
Zoe is in the hospital
Well, we had a good run...2 years without being in the hospital! Zoe has been off and on oral antibiotics since October. She has SOB (shortness of breath) when doing minor activites...literally like crawling across the floor or running down the hall. Her pft's have gone from 105 to 83 in the last 2 months. We all agreed (her doctors and Scott & I)time for a good dose of IV antibiotics.
She had a PICC (peripherally inserted central catheter-an intravenous access that can be used for meds & blood work for a prolonged period of time) line placed, with a little help from our friend Versed (sleepy med). It took two tries to get the line placed....but it is good to go now.
She had her ct scan of her lungs yesterday to check for Bronchiectasis. A ct of her sinuses will be done after the full 2 week course of IVs.
Unfortunately, things didn't go as smoothly as hoped today. Her Dr. came in and informed us that her sugars are high. She was tested for cfrd (cystic fibrosis related diabetes)two years ago and was borderline at that time. So he ordered the 3 hour glucose test for tomorrow. We are really hoping and praying her numbers are good. Adding cfrd to cf is tough.
She is in pretty good spirits. Had a little crying session last night. WHY do I have to be in the hospital, WHY do I have to have a PICC, WHY can't I be at home....it is heartbreaking.
Will keep you posted on her hospital stay...
Take care of you and yours,
Jada
She had a PICC (peripherally inserted central catheter-an intravenous access that can be used for meds & blood work for a prolonged period of time) line placed, with a little help from our friend Versed (sleepy med). It took two tries to get the line placed....but it is good to go now.
She had her ct scan of her lungs yesterday to check for Bronchiectasis. A ct of her sinuses will be done after the full 2 week course of IVs.
Unfortunately, things didn't go as smoothly as hoped today. Her Dr. came in and informed us that her sugars are high. She was tested for cfrd (cystic fibrosis related diabetes)two years ago and was borderline at that time. So he ordered the 3 hour glucose test for tomorrow. We are really hoping and praying her numbers are good. Adding cfrd to cf is tough.
She is in pretty good spirits. Had a little crying session last night. WHY do I have to be in the hospital, WHY do I have to have a PICC, WHY can't I be at home....it is heartbreaking.
Will keep you posted on her hospital stay...
Take care of you and yours,
Jada
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