B.cepacia

Caleb's clinic just called and said that his last culture which was about a month ago grew B. Cepacia!!! They sent it to a few different places to confirm before calling me... They said out of the 5 different types this was the better of them.......


I would rather him not have any! I feel like I am going to puke! I thought this was something that they cultured when they were older.... NOT at 7!


Melissa

About Us........

My Name is Melissa and I have been married to jim for almost 10 yrs.....

We have a son dylan who is 1o and does NOT have cystic fibrosis.......

Our Middle son Caleb was diagnosed with Cystic fibrosis at 7 months old....... 7 yrs ago today....

I remember our wonderful ped. saying she just wanted to rule it out, after caleb had been sick off and on for several months................

I also remember my mom telling me that there was no way he had cf..... and when kids did have it they had to be pounded on several times a day.................

I remember the day caleb had his sweat test the person that did it said out of all the tests she had done no one had ever tested positive................

I remember the day caleb had his sweat test we had just gotten home (only 40 mins after the first test) I was called to come back in for another sweat test................

I knew in MY HEART SOMETHING WAS WRONG!!!

I brought caleb back in and they re-assured me that I was only there due to their error!

Another hr passed and the Ped's office called me and wanted me to come in ASAP to talk about the test results.....................

I demanded to hear the results over the phone!! I knew something was wrong and didnt want to drive an hr worrying......

After a few mins of hesitation they told me that calebs sweat test came back POSITIVE for Cystic fibroisis..........

It had been a long time since I saw my mom and gram cry.......................

Expecially MY mom!

We were told a few facts and pretty much sent on our way.....................

Later that evening I got a call from calebs ped (who was on vacation)

She was stunned with the results.........

She just couldnt believe it.................

No one could..................

Caleb was started on meds which he just wouldnt take................. NO matter what!!!!!!!!

A few weeks later he still wasnt getting better and he was rolling his eyes.............

It was found that he had a very low sodium level and was immediately transported to barbara bush childrens hospital.....................

He spent a week there getting his levels back to normal................... and for me it was learning more about his diagnosis.............

It took him a few yrs to get past the gag reflux in order for him to take his enzymes!

For him it came down to swallowing a piece of Hubba Bubba bubble gum!!!

So far he has only been in the hospital that one time.............

He is now 7 1/2 and on the following...........

2 creon 20.....

2 puffs of flovent twice daily

albuterol twice daily

azithromicin M/W/F

Cefzil twice daily

Pulmozyme once daily

ADEK vitamins...

culturelle

Chest PT twice daily

prevacid once a day

2-3 pediasure daily

High calorie diet.........................................


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

Melissa

Vest time.......

Caleb fell asleep half way through :)


Wyatt on the other hand.....

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