Its late........

It is too late right now so part 2 will be posted tomorrow!

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

Never Bribe a 15 month old :)

Well, Lets just say I learned my lesson! Wyatt being on tobi is a big pain in the butt! There is no way he will sit still long enough to do it while he is awake so I have been doing it when he is napping in the morning and after he falls asleep at night. The other day I had a bunch of errands to do and he was getting sleepy and I couldnt keep him awake so I decided I would give him a peppermint patty. It was about the size of a quarter! I was about 5 mins from my house and figured he'd just gobble it up and then id be home..... Well this was the scene when I got home! I have no clue how he could have made such a mess with a teeny piece of chocolate... As you can see he was pretty proud of himself :)

Yup! lesson learned!

Until next time......

Melissa

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