the Good, the Bad and the Ugly

I know everyone has been asking me how Kaitlyn's doing, and I am sorry I didn't update yesterday, but it was a long day. She had her colonoscopy and endoscopy yesterday at All Children's hospital. It was our first time there, and let me just say wow. The hospital is huge, the kids there seemed to be having fun with all the kid friendly entertainment (such as game systems like Wii and X-Box as well as several toys and games that are hanging on the walls). Kaitlyn was a little nervous, but she did excellent. They didn't even give her numbing cream for her IV (they used Freezy spray?) but even then she did great! (Here is a pic of her right after they put in her IV.)

She had an endoscopy in another hospital just 7 months ago, and we had a much longer wait and it wasn't as comfortable... @ All Children's things went very smoothly.

Anyway, after her procedures, the doctor came out to talk to me, and the good news is he told me they didn't find anything else (such as crohn's disease, etc) THANK GOD!!! He said where she is having the issues is where they would expect a person with CF to have issues and he wants to "be aggressive" about it and so the bad news is he has upped her Miralax to 3x/day. Hopefully that will take care of it... but Kaitlyn hates the miralax, so it's still kinda bumming her out. When she came out of recovery, she was pretty dizzy and groggy, but she was happy it was over and done so quickly. She couldn't even hold her head up she was so dizzy, so she had to take a nap to sleep off the anesthesia.

After her procedure we let her choose where she wanted to go for lunch, and as she had planned all along, we went to a Chinese buffet restaurant. Fortunately for her, there was a Chuck E Cheese next door and after lunch we took her over so she could play some games. She had a blast, and she was nice enough to even spend a few of her tokens taking Gabriella on a ride or two.

They both had a blast, Kaitlyn really wanted to take Gabby on this one, but I had to draw the line...

anyway, Kaitlyn had a lot of fun, it was her first trip to Chuck E Cheese (they don't have one close by here), but we've promised anytime she has to go up to the hospital we'll stop by and let her play awhile...

And I would really love to end it here, on a good note, but unfortunately I can't. I received a call today from Kaitlyn's pulmonologist. She still has a cough, and tonight was going to be her last dose of her antibiotic, but it seems even though I was sure she was getting better, that she will have to do another round with a stronger antibiotic. Her culture came back positive for pseudomonas. Not the news I wanted to hear... so tonight she will start on a different antibiotic orally, and they are working on getting her TOBI (inhaled antibiotic) approved and sent to her ASAP, so she will probably start that one on Friday. I know that pseudomonas is not a good thing, but as this is the first time we are dealing with this, I am still doing a lot of research. The nurse who called me said thankfully it is non-mucoid which she explained means it hasn't colonized yet.... so that is better than if it had. Hopefully this round of antibiotics will kill it and we won't have to do the TOBI again for a while....

What I would really like is to see Kaitlyn catch a break. Lately she has been tired a lot, coughing a lot, and just plain sick of not feeling well. She was really excited about going back to school, and hopefully doing karate this week. I have to go down to the pulmonologist's tomorrow to pick up more neb cups for her, so hopefully they will still let her do karate Friday. I want to make her happy, but I also don't want her to overdo it and make herself worse.

I appreciate all of you keeping Kaitlyn in prayer. I let her know every time someone tells me they are praying for her so she is aware and thankful too. Every prayer helps! She is very aware of how many of you love her and THANK YOU for taking the time to tell her and show her. For those of you who have already donated to her GREAT STRIDES team Kaitlyn's Crusaders, THANK YOU!!!! For those of you who haven't donated yet, there is still time, our walk is APRIL 2nd. Please donate anything you can, even $1.00 is a $1.00 more they didn't have before. Everyone of you who donates can honestly say you're part of finding a cure for CF! Kaitlyn is a huge part of this walk, she is very involved, so she knows everyone who donates is truly showing their LOVE and SUPPORT!!!!! So once again THANK YOU, THANK YOU, THANK YOU <3 <3 <3