Happy 2009!!!

Mixed emotions on a new year....I feel old. How can another year pass so quickly??? How can my Zoe almost be 5???? How can this happen so fast??????

We had a wonderful Christmas! We spent about 4 hours watching everyone open their presents one by one. It was terrific! New Years was quiet. Just Scott, me and the little girls. Everyone else was gone. We had a nice dinner, Scott gave me a great massage, then we went to sleep by 11.....hence missing the midnight phone call from Mel & Terri.

Zoe is doing awesome!!! She isn't coughing and her nose is drying out some. Today she had a ton of energy, we take that as a good sign that she is doing well. Now just to get her weight back up! She is looking thinner to me, not as full in her arms, legs and cheeks. Always something.

I liked how some people recapped 2008....I'm going to recap a few things...

My kids did awesome in swim team...2 of them earned the most points for their age group!!

I got to fly to NY, stay with Mel, meet in person: Terri, Jane, Joni, Graves, Jeanne, Amy and Peter. I had the best time, fell in love with Jazz and Mel.....

Zoe was hospitalized 4 times between December and November.

Team Zoe for Life raised almost $10,000.00!!!!!!!!

I got to meet and become friends with Tammy Cochran.

We lost our house due to finances...moved closer to Scott's work...now he drives 100miles one way everyday instead of 140 miles.

Graves visited us...ate dinner...spent the night...we had a great time!

I have some very wonderful people in my life that I could not do without.....

My dad and mom visited...I love them so very much and wish I could see them even more!

Life is terrific....I cherish every moment and am going to try really hard this year to look at things more positive.

I pray you all have a very blessed 2009!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Good Surgery!!

Zoe's 2nd sinus surgery on Monday went very well! She still had some packing in her sinus cavity, so they removed that, cleaned her out again, took cultures and finished up in less than 45 minutes. Her O2 was great right after, holding around 96-99! She had her regular CF clinic appt. on Friday. These cultures came back clean also! So, she is still antibiotic free as of right now. She is recovering well, Dr. said she has a lot of 'boogers' in her nose for just getting cleaned out, but her ENT doc said she will have some drainage, etc... for a couple of weeks.

The yucky news was that Zoe had lost over a pound. Since her diagnosis, when we got her caught up on the charts, that was the last time we have ever heard anything about her weight. She has been in the 75-90%. It took a lot of work to get her there...but she has steadily been gaining since diagnosis. I think one of the things that has hurt us the most is that about 2 months ago, she decided that milk and Ranch dressing all taste weird now. She won't drink milk at all now and quit dipping everything in Ranch. She had always drank 8oz. of whole milk mixed with half & half at every meal. Now all she will drink is WATER!! Ugghh.

So, one of the things we are going to try is 15mg. of zinc a day. Her doc and nutritionist said that sometimes when things suddenly taste different or yucky, it can be a zinc deficiency. We all agreed it wouldn't hurt to try. They want to see her in 2 months instead of 3, to check her weight.

Thank you all for praying for Zoe's O2 to be good after this surgery....prayers were heard and answered!!

Have a wonderful week...

Jada

Surgery Again Tomorrow...

We have had a nice weekend...took the kids to see Santa yesterday. We take them to a local realty office that has a 'real' Santa every year, so the girls get to see the same guy. They also have a little train ride that Zoe loves. I like to take them there because I feel that Zoe is exposed to a less germs than the typical 'mall Santa'.

Then I picked up my oldest daughter, Tara, who came home with us for the weekend. She babysat last night so Scott and I could do a little shopping and go have dinner. We ended up spending the whole time in one store, Ross, got some presents, then we were hungry and the pizzeria I wanted to go to had closed already! I must say, I do hate that part about being away in a smaller town now, everything closes so early! So we drove towards home, picked up a pizza at Papa Johns and ate pizza on our cozy bed.

Today we went to church, dropped all the kids off at the house, except Tara, Zoe and myself. We went to lunch and did a little shopping.

Now I am home, making baked brie, drinking a new wine Keeley told me about and starting to think about Zoe's surgery tomorrow. Uggh. Please pray that her O2 stays stable this time, so we can go home quickly. She has started a cough/clearing throat again yesterday, and her nose is driving her crazy running constantly since the last surgery.

Thank you all for your continued prayers! I pray that you and yours are doing well...

Love,

Jada

Culture Results....

Yesterday was Zoe's follow-up after sinus surgery and pre-op physical for her next sinus surgery on Monday. I was absolutely shocked to find out that both of her cultures from her sinuses and her throat came back completely CLEAN!! They did not grow anything! I asked her doctor how sinuses that were completely full of thick, yellow mucus and pus could culture zero bacteria??? Amazes me. CF baffles me. Then there are the clinic visits where she seems like all is great and they call a week later saying she cultured some weird, nasty bacteria!?!? Don't get me wrong...I am THRILLED that she actually left clinic for the first time in I can't remember without having to get a script filled for an antibiotic!

So the plan is for her second surgery Monday. Please keep her in your thoughts and prayers that her O2 won't drop like last time. That was a little scary for us.

I have to share something that I thought was hilarious. On Zoe's check out paper from clinic yesterday her doctor wrote:

Patient Instructions:

-Ok off abxs

-Medically clear for 2nd look sinus surgery Dec. 8

-Ask ENT to repeat CF culture from tracheal aspirate

CF FU as scheduled


CF FU......MY THOUGHTS EXACTLY!!!!!!!!!!! LOL!!!!

Have a great day.....

Love,
Jada

Our Family 2008

We are home....

We got home Sunday night, one night longer stay than we were expecting, but not too bad. The surgery went well. It did take the whole two hours. Her ENT doc said that her sinus passages were tiny, swollen, and filled with a "thick, like toothpaste, yellow mucus". Yeah. Anyways, she cleared her all out, took samples for cultures.

In recovery, we came to her. She was crying. Tears were rolling down her cheeks. I picked her up out of the bed they had her in. She snuggled up, then fell restlessly back to sleep in my arms. For the next 2 hours plus, her sats dropped down into the 70's. I was scared. Scott was scared. We have never seen her sats drop before. They ended up doing blow by oxygen for over an hour and a half. Finally, she was able to keep her O2 over 92, so they sent us to her room. Because of that, they kept the O2 sensor on her the entire hospital stay (she was not happy about the E.T. light being on all the time)!!

Then we found out that her pulm. doc wanted to make sure she "pooped" before discharge. Of course, she didn't. So they kept her another night. Ugggh. A little Miralax later...and we get our discharge.

She has had to take some regular Tylenol since we have been home. The first 2 days was Tylenol with Codeine. She was in a bit of pain, sinus area and throat. Now she has a lot of draining going on. She is sniffing constantly. I guess that is to be expected after clearing out the sinus cavities. We will wait to see what her cultures grow to see what antibiotics they want to put her on. Other than that, she has her second "clean-out" sinus surgery on the 8th.

I want to wish you all, my family, a very warm, happy, Thanksgiving!!

Love,
Jada and family

Sinus Surgery

Tomorrow is the day. We have to be there at 8:00 a.m., surgery is at 10:00. It is supposed to take 2 hours. Then she will be admitted for a couple of days. I have to admit, I'm a little nervous about this admission. Mainly because of 2 hours of anesthesia, and the 'pain' after factor. She hasn't ever had anything besides picc placements, bronchs, endoscopies, etc... never anything associated with pain afterwards. I have no idea how she even handles 'pain' yet. Does she have a low or high pain tolerance level??? Ugghh. I do know she panics with picc bandage removals, cries alligator tears because it "hurts".

Sitting there for 2 hours during surgery....wondering...thinking....waiting...I think it could be a form of torture.

Please hold Zoe in prayer tomorrow

Thank you all

Love,
Jada