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! :)
5 days ago