Tuesday, September 30, 2008

Enterobacter...new bacteria

Well, the call came yesterday. Zoe's doc. Kathyrn.

Mel fortold the truth of CF. No matter how much antibiotics you put through someones body...oral...inhaled...i.v.'s...they can STILL culture bacteria.
Amazingly enough, Zoe's culture from last week came back with a brand new (to us anyways) bacteria....Enterobacter Cloacae. Sensitive to Tobi...among some other drugs. Since she is just now starting week 2 of a Tobi round, we decided to not "rock" the boat and continue with her treatment plan that she is currently doing.
When I was talking to Kathryn today, she asked how she was doing? "Good" no coughing, very little throat clearing...."Good", "Let's don't change anything, sounds like what we are doing is working." I agreed. Of course late this afternoon, I notice that Zoe has coughed a bit. I asked her..."What was that?? Are you coughing??" She sais, "Yes, Mommy, it's ok, It's just a cough." Ugggh. Hopefully just a freak evening. I guess I just need to start expecting the unexpected with CF.

My almost 17 year old son, Caleb is preparing for the Navy. Not just the Navy either. He wants to be a Seal. He is running everyday in full clothes, combat boots, etc....running his 3 miles in just under 20 minutes today. He actually turns 17 on October 14. I can legally sign him over to join then. He is ready. I really hope it all works out for him. I personally think it is perfect for his personality.

I had another blessing on Friday. I think God holds me in His arms often. I feel blessed and cursed all in the same week. Anyways...to the blessing....the kids and myself stuffed envelopes at the CFF office on Friday. We got there early, hooked Zoe up for her treatments, the kids started stuffing envelopes. One of the ladies that works there, Linda, asked if she could ge the kids doughnuts. So, I wanted coffee, I rode with her to get the kids dougnuts and us coffee. On the way, Zoe's doc calls. We discuss Zoe's treatment plan, then discuss the expense of the Tobi that I picked up on Monday. My 30 day supply, co-pay is $100.00. I didn't have the $$ that day, they said they would bill me. I asked Kathyrn if Zoe was going to be doing the 28 on 28 off, we should do the mail order, then we could get 90 days for the price of 30. She would let me know...in the mean time send me some info on Tobi assistance. I get off the phone. Linda sais...."Jada, there are some friends of mine that I get together with every week. We have a fund, instead of giving eachother presents for birthdays or holidays, we put money into this fund. I read your blog to them a while back. We decided that this Christmas we would give your family a couple of hundred of dollars....but I'm going to the bank right now. I'm getting $200.00 out and giving it to your family, so you can buy your Tobi." I cried. I couldn't even talk. The love from people amazes me......complete strangers (Linda of course not being a stranger, but her friends). I was taking the kids to their ped. doc that afternoon to get their flu shots. $15.00 a piece, plus an $89.00 balance I owed from 2007. Almost $200.00. I set that $200.00 from Linda (& friends) down on the doctors counter, paid their bill in full. Then I looked at the receptionist and said, "This was just given to me this morning, from a great bunch of people, that knew my family needed it." She looked at me like I was an alien. Linda and her friends...thank you...from the bottoms of our hearts..you have touched and helped our family more than words can express.

Wow, I have rambled a book on tonight....sorry. Hope you and yours are good tonight. Hold them close....smell their breath....that sounds crazy I know...but I do that, I lay next to Zoe, smell her breathing....hold her close while she is sleeping.


Thursday, September 25, 2008


Finally!!! Zoe's PICC was pulled!! Yeah! I have to tell you, the biggest thing with Zoe is the bandage on the PICC. "Don't touch my bandage!! Don't touch it!! " Those are her famous words.

So, needless to say, when you have to pull a PICC, the bandage has to come off. Her doctor, Kathyrn, prepared in advance, with music from her own personal ipod, music Zoe likes. Disney Princess songs. She let Zoe hold her player in her right hand, while she worked on the bandage on the left arm. She did panic a bit while the bandage was being removed, but it was much better than previously!!

Kathryn is an awesome doctor and person, she cares about her patients, goes out of her way. She (Kathryn&other docs) decided that Zoe should do another month of Tobi and 2 weeks of oral Augmentin. Just because she isn't quite at her 'baseline'. She is still clearing her throat frequently, not coughing though, which is great, considering she was coughing up to 75 times a day before her hospital admission. I will call tomorrow to get her culture results from Monday. I honestly cannot see how she could culture anything but normal oral flora after this onslaught of antibiotics. But then again, my dearest friend, Mel, who is 40 living with CF, pointed out to me that, Jada, this is CF, expect anything. Yeah, words of wisdom. I love her to death.

I found out that Zoe's doc has read my blog. How COOL is that???? She said it was great to read what you guys go through, outside of clinic. I felt like, WOW, that is awesome, they care enough to read about OUR lives. AWESOME !!

We are getting up early tomorrow. Early being 7:00 a.m., (we home school, so 7 is early for us) heading out the door by 8, to go to the CFF office to do some envelope stuffing for a few hours. All the kids are helping, so we have many hands! I am bringing all of Zoe's nebs, albuterol, pulmozyme, her vest, then her Tobi. We will do all that at the office while the kids stuff envelopes!! Then the kiddos have their flu shots at 1:30. Yeah. We won't even discuss the financial issues of late.....they have been crazy....with Tobi alone being $100.00!!! Uggghhh!!! No wonder I can never afford to buy "extra" things like clothes for everyone!!!

Alright, I guess I have talked enough....thanks for listening! Oh and place those bracelet orders!!!!! I want to get the order in next week.

Take care of YOU!


Monday, September 15, 2008

Another week of i.v. antibiotics..

Zoe's hospital stay went well. She was in for 5 days then got to go home. She was quite happy! She went home on 2 i.v. antibiotics, Tobra and Timentin, every 8 hours. That puts me starting i.v.'s at 10 pm finishing at 12. Getting up at 5:00 a.m. to get them to room temp, starting at 6:00 a.m., finishing at 8:00 a.m. Then doing it all again at 2:00 p.m. Plus an hour of breathing treatments and cpt 2 times a day. It is a full time job just taking care of her medical needs. She is showing improvement. Her cough had decreased in frequency and junkiness.
We went to her CF appt. Friday, thinking the PICC would be pulled and we would be done with i.v.s. Her doc said, I have good news and bad news...the good news is we are stopping the Tobra. The bad news is we are continuing the Timentin for another week. She had just coughed up quite a bit of yucky mucus on the way to clinic. Ugghh. So they weren't quite ready to let her be i.v. free.
Now, Zoe was happy. You see, the worst thing about a PICC and the i.v.s to her is the bandage being removed. It has to be changed once a week. She cries, big alligator tears...."Please don't take the band-aid off...." It is so sad. She has to be tough for so many things...tons of oral meds, hours of breathing treatments & cpt, i.v.'s, but you get to that bandage thing and she loses it. Way too much for a 4 year old.
Yes, I suppose I am feeling sorry about now. It happens. I hate CF. I hate what it does to Zoe, what it does to everyone that has this terrible disease.
We lost 2 cf'ers this week. Young people in the prime of their lives. I can do nothing but pray for their families. It makes you feel so helpless.
So...enough whining...off to take Timentin out of fridge....
Thank you for you thoughts and prayers for Princess Zoe,