Testing Testing, yet again...

So after our our lovely trip to the E.R. for Kaitlyn the other night and a subsequent visit to her primary doc, it was back to see the G.I. doc again today. He decided to send us for another x-ray of Kate's belly seeing as how they neglected to do one at the E.R. despite our request for one... we'll hopefully have the results of that tomorrow. He also ordered another round of tests.... stool samples, a endoscopy and a colonoscopy. Those will be done next week, so hopefully that will give us some much needed answers as to what is going on with all her G.I. issues. He wants to make sure that it isn't another underlying problem on top of CF (such as IBS, Crohn's disease, etc). Of course he says it could just be because she wasn't treated for so long her GI tract could have permanent damage from the CF, but hopefully that is not the case.... hopefully we'll get positive news from all these tests, because poor Kaitlyn has been having a pretty rough time lately.

She is also still sick with the upper respiratory stuff, although I can't tell if she's getting better yet, she is definitely not worse. We go back to the pulmonary doc on Friday, so maybe some good news there.... The GI doc actually asked if we were going to put her back in the hospital for another "tune up" which made me cringe as she just had her first one ever only 6 short months ago, but hopefully it won't come to that. She is pretty nervous about all the testing, and none too pleased about the "clean out" process required for the tests, but I think she is MOST upset about not being able to do karate until at least next week. Please keep her in your prayers this week and next as we try to figure out what all is going on with her right now. She's my little WARRIOR, and she's handeling this so well, but I just wish she could catch a break and feel better for more than a few weeks at a time.... One thing for sure though.... she always has a smile on her face :)

p.s. some good news today... Kaitlyn gained back 2 lbs that she had lost!!! YAY!!!

Ding Ding ROUND 5

Okay, so Kaitlyn all of a sudden crashed yesterday.... she has been fighting another infection for about a month now. Her pediatrician put her on a liquid z-pack two weeks ago... she was still congested when we saw Dr. F (pulmonologist)  last Wednesday, but because she had already done 4 rounds of antibiotics in the last 5 months he really didn't want to do another round, so we just added manual CPT. She's been about the same since then until yesterday. She scared the heck out of me at karate, I really thought she might pass out.... but her inhaler helped a little. She did a round of breathing treatments as soon as we got home, but then she complained of a sore throat and of course she had been sneezing and coughing up more "junk" even during karate. What Kaitlyn neglected to tell me earlier was she had had some trouble at school as well... I didn't find that out until I talked to her teacher this morning. She said Kaitlyn had some trouble breathing earlier in the day and went down to the nurse for her inhaler.... had I known that, we would have skipped karate, which is probably why Kaitlyn didn't mention it. Her sensai had to tell her not to push herself so hard, the girl is one tough cookie!

So anyways, we lucked out and Dr. F had an opening this afternoon. He said last week her FEV1 was 94% and today it had dropped to 83% still not bad, but a considerable drop, and he said she is definitely more congested, so he put her on round 5 of antibiotics and said she should stay home the rest of the week and increase the breathing treatments to 3x/day. We still have to go back and see him next week to see if this round of antibiotics is working.

 I did ask again if I should take her out of regular school and home school her instead, but he still feels that is not necessary at this point. I want to at least let her finish this year and then we'll see.... for now she gets an extended presidents weekend.

(picture from 1/30/11)

P.S. Thank you for all the thoughts and prayers for Kaitlyn!!!!!

Kate clinic update 2/9/11

Kaitlyn had a clinic visit on my birthday, and I have been meaning to update everyone, but it was a busy couple days here....Clinic went pretty well, we were worried about her PFT as she has been coughing for about a month now. Her original visit should have been a week earlier, but her doctor had a family emergency. Anyway, her PFT's were close to what they were the last time, although down a little bit. He didn't give me an actual number, but she was in the 90's last time, so I am glad she has stayed so close to that. She is more congested though, and he has made us add manual CPT.... of course Kaitlyn responds with her usual humor... "Hey Mom, now we can get you that shirt!"

Guess it's a good thing she has my sense of humor. So anyways, she is handling that in stride too. She also had to add yet another medicine to her regimen. She has to now take a probiotic due to all the antibiotics she has been on in the last 5 months. Dr. F said he doesn't want to put her on another antibiotic for her congestion, since she has already done 4 rounds in 5 months, and he thinks that may be the cause of all her belly issues right now. I still think the enzymes are to blame, but he said it can take a few weeks to have the new ones work, and he wants to give it some more time before trying to switch them again. We go back to see him in 2 weeks to see if the probiotics helped at all, and to see if her chest congestion is any better... if not I don't know what's next.

The bad news is Dr. F has decided to move. He is moving in 4 months to Orlando. That means we have to find Kaitlyn a new pulmonologist that has a CF clinic.... I think we are going to move her to All Children's, since that is where her new GI doctor is, but we are very bummed about losing Dr. F. Hopefully he can get her all straightened out before she has to see the new doctor in June.

Update on the kids

KAITLYN UPDATE: Okay, so Kaitlyn has been having a lot of increased GI issues for the last couple months. When she was first diagnosed and hospitalized the doctor had put her on Zenpep (enzymes). They worked GREAT for about a month, then slowly she got worse and worse. They kept increasing her dosage until she was on the max dose possible. Still there were no changes with the max dose, so the new GI doctor switched her to Creon. She has been on Creon for about 2 weeks with no change. She has lost weight again, though not a severe amount, it has dropped her back into the 10th percentile (they want her in 50th). She has however grown a very slight amount, she is in the 25th percentile (again they want her in 50th) for her height. Kaitlyn is already on several antacids, so they can't really prescribe anything else for her pain & discomfort (nor do we want them to, as Kate is on enough meds). They decided to up her dosage for the Creon, and see her back in a month. Hopefully that will help, but she started that yesterday and as of 24 hours later that hasn't helped either. I know it may not seem like I am being patient enough, but when she went from no treatment to Zenpep there was an immediate difference the very first time she used it. Anyway, we will be watching her closely, because they don't want her to lose anymore weight.


Also, turns out Kaitlyn's clinic appointment (CF clinic with the pulmonologist) was canceled due to Dr. F having a family emergency. Unfortunately it was very important that she be seen, due to the cough she has had for the last few weeks. I asked when they would be able to get her in, and they don't even know when Dr. F will be back. Then they said technically they don't have any appointments available until MARCH, so they have to wait to see where Dr. F wants to "squeeze her in". So since I have no idea when that will be and I am not comfortable with her waiting any longer, we took her to see the pediatrician today. She agreed that it needed to be addressed, and has put Kaitlyn on another dose of antibiotics. She is treating her as if it is bronchitis, but without a culture there is no way to be sure. If these antibiotics don't help, she said she will call Dr. F and insist she get in immediately. This is Kaitlyn's 4th round of antibiotics since September, so I am hoping they will work and she won't need anything stronger.

GABBY UPDATE: Gabby also saw the ARNP. Of course as they called to tell us earlier the genetic test for CF showed NO mutations!!!!! This means Gabby is not even a carrier!!!!! Almost all of the other tests they did on her came back normal with one exception. I don't remember the name of the test, but the gist of it is they believe Gabby is also lactose intolerant, just like Kaitlyn. (The only way to be 100% sure is biopsy, and I didn't want that and they agreed). They prescribed Miralax (for the constipation) and Prevacid (for the reflux) and have me avoiding as much lactose as possible. I don't know that I can cut out anymore, seeing as how Dr. Ross had been thinking she had a protein allergy and had me avoiding lactose and all beef and lamb products as much as possible. That being said, she also follows up in a month and at that time we will see if Lactaid enzymes are needed for her as well. She has started evening out in height and weight though, so that's good.

JOSH UPDATE: Josh has had no doctors appointments, because as always, he is the picture of health!!! He is probably more healthy now than ever before because he has gotten into weight lifting. He is even on the weight lifting team at school! He looks more and more like a man and less and less like my "little" boy every day :(  Unfortunatly, I can no longer threaten to "cut him off at the knees" as I am pretty sure that he could take me.

Zero tolerance...

Okay, I don't know how to "ease" into this subject, so I'm just gonna jump right in. I received a call from my daughter's principal today. At first I was scared Kaitlyn had gotten herself into trouble again for being her normal talkative self. Well, turns out it was worse than that... Kaitlyn and some others had overheard a classmate threaten to bring a gun to a birthday party. The child also threatened to shoot three of their classmates. THESE ARE 5TH GRADE CHILDREN! That means they are 11 years old at most!

The principal wanted to assure me there was nothing to worry about as the child's parents had been informed and they assured the principal the child has no access to weapons of any kind, and she wanted to let me know that they were taking this very seriously. The school has a zero tolerance policy and suspensions are going to be involved, among other things.... but I don't think that is a solution. Sure this girl will probably never say something to that effect again, but will it stop the cause? The principal said the girl's feelings were hurt by some of the kids in the class... so it leads me to believe this is about bullying.

The main reason the principal called me was to give me a heads up about the situation and to make sure that Kaitlyn wasn't scared. Being this all just happened today, it's still under investigation, and being Kaitlyn was only a witness, I may never know the full story, but I really think something has to be done about the bullying. The school also has a zero tolerance policy on bullying too, but that doesn't stop it from happening. Kaitlyn herself was bullied pretty bad last year. She too got herself into trouble for something she said trying to "deal" with the situation.

I am sick over this. One, that kids (especially kids so young) have to deal with either part of this, the bullying, or the threat of guns and shootings. Second, because this kind of thing is every parents worst fear nowadays when we send our kids to school.... I don't know what the school can do, maybe some kind of assembly where speakers are cops, or a speaker who has lost someone due to bullying.... all I know is this situation isn't going to go away. It just seems to get worse the older kids get. I don't know what I can do to help, but I am certainly open to suggestions....

There is so much more I have to say about this, but I have to get to bed as Kaitlyn has clinic tomorrow! She also has to see the new GI, so it's a full day of appointments, but if you have some suggestions on how you would handle this, please let me know. I will be back tomorrow with an update.