What's up, Doc???

What’s up, Doc?

I am going to rewind 2 weeks before I update you on the latest Ellie info.

Brandon and I decided to take Ellie on a vacation to Sea World for the weekend. We are typically very protective of Ellie and don’t purposely expose her to places like Sea World…except, let’s face it ~ she is a kid and she needs to have fun like that every once in a while. So, along with my best friend and her two kiddos we embarked upon a fun filled weekend of roller coasters, popcorn, frozen lemonade, cesspools…I mean swimming pools, hotel rooms and water parks. We were like normal parents…laid back and relaxed as our baby girl danced on the dance floor to the DJ and ran wild with Shamu and his buddies. While we were there I noticed that Ellie was sneezing more often. Yes, I am so anal that I actually count how many times she sneezes in a day b/c it could be a “sign” that she is getting sick. Ellie’s immature immune system caused by prematurity was our usual suspect when she got sick. In the car on the way home I gave her Tylenol and finally she fell asleep. Monday she was still running a low grade fever, but the coughing and sneezing had increased in frequency. By Tuesday morning, she had her finger in her right ear and she was telling me that it was hurting her. UGH!!! All I could think of was this post and how fast we went down hill! So, to the doctor we went. Sure enough my little m.d diagnosed herself with a nasty ear infection in the right ear. We got our prescription for 10 days worth of amoxicillin (liquid candy) and we headed home. Seven days later we were out of meds. Ellie’s chest congestion had gotten progressively worse, so we started her on nasohist DM which is a Rx strength Triaminic. In the last week we have seen some relief in symptoms until yesterday. Ellie spent a lot of her day coughing…and I mean really coughing…to the point that I did CPT on her three times.

Following Ellie’s “diagnosis” by DNA on Tuesday that she is a carrier of both mutations: r117h and ps686y I made it my mission to get her into the CF clinic at TCH asap…that’s a lot of acronyms in one sentence!

So, anyway last week I spent several days (and hours) trying to get in contact with the Pulmonology department at TCH. On Thursday, I received a call from the nurse in the pediatric CF clinic at Texas Children’s Hospital. She wanted to know “a little” more about our situation…I don’t think she knew what she was getting herself into! She was so sweet and patient with me, but our story is unlike most and it is LONG! So, after several, “Oh’s” and “Oh my’s” and “you poor thing’s” I think I had gotten the gist of our medical history across to her. She said that because Ellie was sick and had been for over a week they felt like they needed to work quickly to get her in. She did mention that they were very busy and that she would call either Friday or Monday with an appt.

Which brings me to today! Our nurse called today and set up a sweat test for next Monday at TCH. Following the sweat test we would have a clinic visit with the chief of the pulmonology department and get some x-rays and other testing out of the way. I HAPPENED to ask her if it would be okay for Ellie to continue her Nasohist DM and she seemed perturbed that Ellie was still on meds. She said she would feel more confident talking to the doctor and then calling me back. After only 10 minutes she called back with the pseudo plan. The doctor was concerned that Ellie has been on meds for so long and felt like her symptoms were clinical signs of an infection that needed to be treated and her feeling was that Ellie may need to be admitted for what they call a “tune up.”

HOLD THE PHONE….TUNE UP….FOR MY BABY THAT WAS JUST DIAGNOSED WITH CF…WHAT THE H*LL???

I told her to have the doctor call me as soon as possible. I would feel more comfortable explaining right to the boss exactly what symptoms Ellie was experiencing and how I really felt she could hold out until next Monday to be seen by him.

So, today in the midst of working my rear off for a huge order (60 bows and headbands mixed by 8am tomorrow) I waited very patiently NOT freaking out that they wanted to admit Ellie into the hospital for her very first CF stay. Well, and I actually texted Somer RIGHT away b/c I knew she would help calm me!

At 6:15pm tonight my phone rang and it was Ellie’s CF doctor…the ACTUAL doctor really called our house! AWESOME!!!

Anyway, after about 30 minutes of me explaining the history and recent symptoms Ellie has been experiencing she felt like rather than admitting her she would squeeze her in on Wednesday morning and do a bunch of tests. WOW! Special treatment…which I know isn’t always good, but in this case it was a total relief. I assumed this whole time they would perform a sweat test, but because Ellie’s mutations were detected through DNA they don’t feel the need to run it. We might anyway only because am curious to know what range she would fall in. More importantly they want to run x-rays on her lungs, take a rectal sample (eeekkk ~ poor baby) and make sure if she does need an antibiotic she gets the right one. You see, the amoxicillin they gave her two weeks ago that I TOLD the doctor hadn’t worked actually didn’t work. The doctor explained that a lot of CF bugs are resistant to amoxil…so, it would make sense that she hasn’t gotten any better since completing the antibiotics.

So, tomorrow we are off to the pedi to check the ears and Wednesday we are off to TCH for a day of fun in the pulmonology department! Oh, and I’m pretty sure by Friday we will be visiting the fertility clinic for ultrasounds and blood work so we can start meds. Really, we just like to pay co-pays!!! KIDDING!!!

Please keep my precious little angel in your prayers and close to your hearts on Wednesday. She doesn’t really get any of this and we all know that the doctor is the last place any baby wants to go to. I am going to put a goody bag together for her for all of our CF clinic trips, so any FUN IDEAS from you cystas, fibros or parents of CFers would be greatly appreciated! I hate the fact that we have this disease, but I love all of you wonderful people that have blessed our lives because of it.

Blessings,
Angie