One of these days I'll be able to write good news in this blog! I'm positive it will happen!
Zoe was re-admitted back into Wolfson Children's Hospital yesterday to try and help her persistent Atelectasis. The left lung has many very thick mucus plugs causing her left upper lung to stay collapsed. She is being treated with a new IV, it is targeted for the Aspergillus that is present in her lungs. Also her Dr. ordered her an IPV machine to help try a different approach with breathing treatments and chest physical therapy.
We are hoping and praying things will turn around for our sweet girl....she is such a little fighter!
Thank you for all positive thoughts and prayers....again!!
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.....
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.
I can't believe I haven't updated the blog since Christmas.....I'm so sorry!
Zoe was admitted in January for IV antibiotics. She did 3 weeks of them...and was still coughing. She then moved onto an oral antibiotic for 4 more weeks....she was finally cough free again! She has now caught a lovely upper chest infection causing a wet cough....so she is back on Omnicef and 5 days of Prednisone. Hopefully that combo will kick it before her clinic visit next week.
Our son, Austin got married last month to his fiancé of almost 2 years! He has a great job and they relocated to where his shop is...a few hours from us.
The kids are all still doing their Kung fu and CSW...they love it!! Alex is an orange belt and all 3 girls are yellow belts now!
We have had many visitors to the Ose House...and we love it!!
Zoe's Great Strides walk is next weekend....in lieu of it I am going to post a poem...from a CF parents perspective.
Some Thoughts From Us Parents of CF'ers.....
There are so many people that have no idea how lonely CF can be or how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake...watching your child struggle to stay above water and you have no idea how to swim!
We live everyday hoping for a cure. We live in fear that our child won't live long enough to experience it. We watch our kids take pill after pill and medication after medication everyday. We do breathing treatments and chest physiotherapy several times a day, taking almost 3 hours. We give our child 15 different medications each day...and that's when they are well. When they are sick they are in the hospital for 2-3 weeks on IV antibiotics. We watch our child scream as they get held down, poked and prodded by the staff. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that takes over their lungs. It makes them work so much harder to breathe. It makes their lives shorter. Our children have an over abundance of mucus in their bodies, it also overtakes their systems. Some of our children cannot run around all day because they get out of breath easily.
Even though our children are so sick, they always seem to smile even at the hardest times. They are tough.
We listen to the comments from people that think our children "look" healthy, therefore, they must be fine. But yet, their lives are withering away right before our eyes. We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious.
We stay awake all hours of the night listening to our children cough so hard that they can't even get a breath in between spasms. We stay in the hospital holding them, waiting for them to get better, hoping that they aren't too weak to fight.
We live in fear because we know one day our children will get sick and not get better. We pray it won't be this time.
We watch families we know lose their children to this battle. We pray everyday that we never have to go through that pain, that we won't have to hold our child until they take their last breath.
We hold onto hope even when things seem impossible. We sometimes feel useless. We fight everyday, with our children, right by our sides, in the hopes that we will not lose this battle.
We keep fighting for our children. We stay strong for them.
We are the parents of a child with Cystic Fibrosis.
Take care of you and yours....
Please consider donating by clicking on the Great Strides badge on the right...every dollar counts!!!!
I guess the old saying, "No news is good news" applies to my posting blogs....
I didn't mean for it to be over 3 months since posting....but it is actually because the saying must be true!
Zoe has been wonderfully well since her 3 weeks of antibiotics in August!! I'm pretty sure this is the longest she has gone without oral antibiotics to treat a cough/infection in... I can't remember how long!!! :-)
We truly feel blessed!
Alex, Madison, Sydney and Zoe are all taking Kung Fu, Jiujitsu, and Gung fu...they all absolutely love it! It's been amazing to watch them learn the different stances. They have already received several stripes on their white belts.
Zoe cannot do the full impact parts, like sparring or the Jiujitsu due to her Port A Catheter. Which, by the way, has been amazing for her!! Her anxiety about going into the hospital is pretty much all gone. We apply a numbing cream to her Port site an hour before any needle is put into it...so she feels zero pain. IV's are no longer a horrible anxiety issue for her.
We spent a lovely Thanksgiving in south Florida with Scott's wonderful parents. They spoiled us with tons of amazing food, fishing and boat trips! They are such a blessing to us!!
We are now gearing up for Christmas! House is finished being decorated...now the baking and shopping starts. All the kids will be here this year except Dalton. Donna and our grand baby, Ella, will be here though. Dalton has a job opportunity to get his foot in the door at a business close to us....hard choices have to be made sometimes in order to look out for your family's future. We will miss him terribly!
I hope and pray that you and your's are doing just as amazing as we are right now....it's crazy how 3 months of your daughter not being sick can make you "almost" feel normal.
Well just a quick update.... After three weeks on IV abx our Zoe looks, sounds, and feels well! She actually blew a 106 fir her PFT's.... Nice! Thank you for all the prayers, positive thoughts, and support as we help Zoe in her fight against this horrible, genetic, life-shortening disease we call cystic fibrosis.... Take care of you and yours!! ~Scott
Born April 7, 2004. Diagnosed with Cystic Fibrosis on the eve of her first birthday....
This blog will be a story of Zoe's journey with Cystic Fibrosis. We will try to keep up to date information on Zoe, our family and Cystic Fibrosis news. Thank you for your interest in our lives.....may God bless you....
Cystic Fibrosis is a life shortening genetic disease. CF causes the body to produce an abnormally thick, sticky mucus, which clogs the airways and leads to life-threatening lung infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to break down and digest food.
There is NO cure!
Zoe's Current Medications and Treatments
~ Zen-Pep ~ 3-4 capsules with all meals and snacks digestive enzymes to break down and absorb fats ~AquAdeks ~ 1 daily special fat soluble vitamins ~Prevacid ~ 15 mg. once daily proton pump inhibitor that helps with the efficacy of her enzymes
~Azithromycin ~ 250 mg. Mon., Wed., Fri., used for chronic lung infection, Bronchiectasis ~DHA ~ 500 mg. once daily omega-3 fatty acid to decrease inflammation
~Calcium ~ due to CF patients being prone to Osteopenia and Osteoporosis at a very early age
~Mometasone ~ a steroid used in nasal rinses to reduce inflammation and polyps ~Albuterol ~ 3 ml. by nebulizer 2-3 times daily inhaled bronchodilator to open the airways ~Hypertonic Saline 7% ~ 4 ml. by nebulizer BID an extra salty sterile solution used to help clear mucus from the lungs & in Zoe's case we are using a face mask so the medicine will go through her nasal passages hopefully keeping her sinuses clearer ~Pulmozyme ~ 2.5 ml. by nebulizer once daily thins the thick secretions so they are easier to cough out of the lungs
~Flovent ~ A steroid to help reduce inflammation ~Incourage Vest ~ 30 minutes in morning after all 3 nebulized meds a chest physiotherapy vest that fits on her like a ski jacket, it inflates with air, then vibrates at different frequencies, to help loosen the mucus so she can cough it out ~Manual CPT or Percussor 5000 ~ in evening after nebulized meds manual CPT is clapping on her lung areas front and back with your hand or a soft percussor cup, the Percussor 5000 is an electric handheld percussor, these are both done for 15 minutes
~Monthly Port a Catheter flushes ~ administered by her home health nurse. 5 ml of 100 unit Heparin
~Food ~ Zoe requires around 2500-3000 calories a day to maintain her weight at a healthy level ~Love ~ Zoe requires tons of kisses and hugs everyday!!!! XOXOXOXO
Zoe's Genetic Mutations
Delta F508 (class 2) 1717-1G to A (class 1) classes of CF genes range from class 1-5, 1 being the most severe disease causing to 5 causing little to no symptoms
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