Sorry!

Sorry... I really didnt fall off the face of the earth! Having computer issues is no fun! That on top of sick kids and meds galore......... You know that drill. Wyatt has still been having a rough time! He just finished his 4th antibiotic for his on-going ear infection issue. Its just so weird. He has never had a ear infection until about 2.5 months ago and its been down hill ever since. I brought him for a re-check today and his ped said the left looked good but the right was red and full of fluid! She is going to give him 2 weeks and check again. If its still full of fluid or it gets infected again she is going to recommend tubes. She said the right ear is so bad she isnt sure he can fully *hear* out of it. I guess id rather go with the tubes than keep dealing with a miserable kid constantly on antibiotics! Caleb is doing good (knock on wood). He had a cold a few weeks back but with some antibiotics and increased treatments we were able to jiggle it out of him :) Dylan is also over his cold so hopefully they are all on the mend. Its been nice around here lately its so nice to open the windows and air out!


Until next time

Slacking on updates :)

Sorry I havent written anything in a week! Between the 3 boys keeping me busy and my father in law being in the hospital with stroke symptoms, I just havent had the chance... Never dull around here! Wyatt is still junky even after being on cipro..... Im at a loss with that sweet boy of mine. I just dont understand how he can always sound so junky. Its weird too. When he coughs he sounds to me like he still has a lot of inflammation and mucus. When I take him to the doctors they listen and say wow he sounds great! Perfectly clear! He does also have laryngomalacia, which accounts for some of the upper airway noise. I cant wait for him to out-grow it so its no longer a issue. Wyatt cultured pseudo last fall when they did a bronch. He was immediately put on the cipro/tobi treatments. even after 28 days of tobi and 14 of cipro he was still sounding clear to them and junky to me. So we went to clinic and they admitted him for iv anti's (on oct 31) and even after that he was still clear as a whistle to them and junky when he coughs (the coughing is usually when he is crying or his brothers get him wound up) Everyone seems to think if it was bacteria related all of these anti's would have taken care of it but it bothers me to no end that they have nothing to say about the inflammation/mucus issue! He does have a clinic appointment next wed and I will be putting my foot down for answers... It just doesnt make sense! Caleb can go on anti's and sound great within a few days.... I just worry that wyatt is going to suffer lung damage the longer it goes on!

If anyone can offer any advice on this id greatly appreciate it! Also if anyone has any hypertonic saline experience I was thinking of talking to them about it to see if maybe that would help!

wyatts current meds are-

Tobi nebs every 28 days
pulmozyme daily
albuterol
flovent
creon 10
adek
axid twice daily
culturelle
cipro- he just finished!
vest twice daily

I will try to post a few pictures later when the kids calm down!

Until then..............
Melissa

Vest time.......

Caleb fell asleep half way through :)


Wyatt on the other hand.....

Until next time...........

Wyatts 15 month well child check!

Well Wyatt had his 15 month wcc today and 3 shots :(.. He was not impressed to see anyone there! He fell asleep on the way so he was out cold through the first part of the appt. He slept through me undressing him and taking him to the scale! I layed him down and everyone was laughing that he was still passed out! I took it diaper off and all hell broke loose :).... He looked around and flipped out! He has never liked the doctors office and the trip to Barbara Bush childrens hospital didnt help the situation at all. Dr. H said he looked great! He weighed in at 26.6 and was 32 inchs tall. He actually lost a few oz. but she said considering the massive diarrhea he's had the past 2 weeks on cipro thats great! She said she would have thought he'd have lost a pd or more! His lungs were clear and she gave me a script to help his diaper rash.. He's had it for 2 weeks now and the nystatin cream makes it hurt worse. It is a yeasty type rash so he kinda needs the nystatin.

Until next time.........

You have to start somewhere!

Well, Im not really sure how to start this.. I have had a blog before and I never really shared it. I ended up losing it somewhere in cyberspace :) Hopefully this one wont end up with the same fate as I think this will be a great way to spread awareness, vent and meet some great people.. I am married and have 3 great boys. My 2 youngest both have cystic fibrosis. Caleb is 7 and wyatt is 15 months. Caleb was diagnosed when he was 7 months old after being sick for a couple of months and failure to thrive. Wyatt was diagnosed at a month old. We had planned on having him tested anyway but when he wouldnt gain a single ounce for the first month of life, I knew in my heart that he had it too. Both kids are doing fairly well. Caleb currently culture staph and wyatt cultures staph and pseudomonas. Each of the boys has been hospitalized once. Caleb when he was 7 months was transported to barbara bush childrens hospital from his dr's office as he was having mild seziures and was lathargic. He had been sick with everything under the sun and his sodium level dropped to a dangerous level. Wyatt has had a tough go of it! He started with some weight issues, then caught a cold... then another cold.. then another... you catch the drift! It got to the point where I walked into the clinic and said something is up! Nothing is working and he is still sick! We decided that a bronchoscopy was a good idea and during that they found that he was culturing pseudomonas. He was imediately put on cipro and 28 days of Tobi nebs, but even after all of that he still had a nasty wet cough! Thats when it was time for wyatts first admission! He spent a awful week in the hospital! It took over a dozen needle pokes to land a temp. iv in his foot! Then about 36 hrs later he blew that line and another unsuccessful 9 trys to get another one in... Then he went under and they inserted a picc line (after another dozen failed iv attempts while under sedation) He was sent home for a week of iv antibiotics. Wyatt was good for a few weeks and then he caught yet another cold.. he is currently on cipro and this is also his Tobi month. So far he is sounding good so I am hopeful that just maybe these poor kiddos can catch a break!

I will try to get some pictures up when the kiddos are settled long enough to do so! :)


Melissa