The above video is of Lil' Chris doing his very first nebulizer treatment!! Not bad for being a 5 year old CFer!! Most CFers start within their first year it seems like! He still doesn't even seem like he needs it, but from what I've gathered, it will only help him in the long run.
His first inhaled med is called Pulmozyme. It's purpose is to thin the mucus. People with Cystic Fibrosis produce very thick, sticky mucus that clogs the lungs and other organs making it harder to breathe. Pulmozyme helps thin the mucus, then the Vest helps clear the mucus out. After his Pulmozyme this morning, we did his vest about 20 minutes after, and I tried to get him to cough after the Vest, but it didn't seem to do much. I guess I was expecting a wet sounding cough that would produce mucus, but it was just dry. Not sure if this is a good sign or not.
I have always been a little scared of nubulizers with Lil' Chris, b/c I know it's very important to keep them sterile. If we don't sterilize them properly, then bad bacterias could build up on it and that would NOT be good for Lil' Chris. We were told to do it right after each use, b/c otherwise the medicine will build up on it and it will be hard to scrub it off. We rinsed it with hot water, then put all the pieces in a bowl and microwaved them for 5 minutes right after his treatment. Then when done, we shook the excess water off and let them air dry on a paper towel. We can not rinse them off with tap water, b/c that would defeat the whole purpose. I've been told that we could use a baby bottle cleaner, so I may have to pick one of those up;-)
This is all a new experience for us, so any insight would be much appreciated!! :)
Lil' Chris is doing GREAT!! He doesn't cough that much, but when he does, it is dry so that is VERY good!! A couple of weeks ago, he was waking up in the morning with lots of build up in his nose, but once he would blow a few times, he was fine. He complained of a sore throat a couple of days, and it got me worried he was getting a cold, but I guess it was just allergies. Thank the Lord!!
Right now, he is living it up having a blast on his Summer vacation, esp the last 4 weeks with his cousins!! Adding the Pulmozyme now will help him get into a routine for when Kindergarten starts this Fall. We decided to start the Pulmozyme this week, b/c I have off work this week and thought it would be good for me to be there with him for the first week so he can get used to it.
On another note...after my vacation this week, I will be going back to work on Mon 7/9 as an Assistant Store Manager of the Wooster Kohl's!!! WOO HOO!! I've finally been promoted AND within the same store!! I can't wait to get started, but this relaxing week with my loves will be so nice:) Thank you so much to all who were praying for this promotion and for me to get to stay at the same location. It really means a lot to me to get to stay so close to Lil' Chris and my family. Family time is so precious to me...to any family with a family member with a terminal illness. I'm just so glad I have the BEST DM EVER to promote me within the same store!! That almost never happens! THANK YOU JASON!!! THANK YOU LORD FOR ANSWERING MY PRAYERS!!
Have a GREAT week, I know me and the kids will...and Daddy when he has off work;-) lol
Reflux- 1 Prevacid Capsule(15mg)once a day to help enzymes work better
Hill Rom Vest 2 times a day for 30 minutes each
-Frequency 10 Hz for 10 min, then switch to 12 Hz for another 10 min., then switch to 14 Hz for another 10 min. two times a day
-Pressure set at 5 for first 20 min, then 4 for last 10 min.
-Currently at 1,850+ hours total (been using since he was 11 months old) (Got a new machine, so lost count now.)
-Upped his Creon 6000 enzymes from 3 to 5 on 1/1/13 due to stomachaches. Switched to Creon 12000 on 1/29/15. 2 with each meal and snack(7yrs old).
-He started his first nebulizer, Pulmozyme, on July 1, 2012 at 5 yrs old. He uses Albuterol inhaler and the Acapella when he has a bad cough.
-His first TOBI treatment was on 11/5/12, b/c he cultured Pseudomonas for the first time:( Also first time taking Cipro. 5 yrs old.
-Started Claritin for allergies on 5/8/13
He has never had any sinus problems... Praise the Lord!
Last CF Clinic Visit: 12/17/14 Weight: 57 lbs. 5 oz. Height: 52 inches BMI: 30 percentile PFT: 111/110
Next CF Clinic Visit: 5/6/15 at 7:50am
We are VERY blessed as to how well Lil' Chris is doing and has never been hospitalized. Please pray with us that he will continue to do well and stay as healthy as possible.
Search My Blog for Anything =)
Hi! I'm a CF Mom (M) and my son is Lil' Chris. He is 7 years old. He was born with a fatal genetic lung disease called Cystic Fibrosis. This is where I keep a record of EVERYTHING(including lots of pictures and videos:) My sister(D) and I started this blog to not only keep a record of everything and keep family updated, but to interact with other CF families as well. That way we can all help each other out by sharing useful information:) I've learned soooo much already and so can you! Come along for the ride! I try to update whenever I can=)
This is a great spot to start out on our blog so you know our story...Start Here
PS. Lil' Chris has a lil' sister named Ayla(pronounced long A-luh)! She is 6 and does not have CF and isn't even a carrier.
11/12 Pseudomonas 1/13 Pseudomonas 2/20/13 NORMAL!!!! WOOHOO!!! 5/8/13 NORMAL!!! YEA!!! 1/8/14 NORMAL!!! OH YEAH!!! He cultured a couple diff things in 2014, but nothing to worry about.
9/12/09 Start Augmentin for 21 days for a cough from a cold.
3/9/10 Start Augmentin for 21 days for a bad cough from a cold.
5/3/10 Start Bactrim for 14 days for bad cough from a cold.
7/12/10 Start Augmentin for 14 days at 3ml 2x a day from a cold again.
9/15/10 Start Augmentn for 14 days at 3.5 ml 2x a day for a bad cough following a cold.
1/11/11 Augmentin for first ear infection
2/10/11 Started Bactrim for wet cough...no cold.
9/6/11 1st time on Omnicef for bad cough-from cold/allergies
1/30/12 Bactrim for 15 days 12.5 ml - weird cough after Disney
3/30/12 Started Azithromycin 5ml 1st day and then 2.5ml for next 4 days-wet cough after cold/allergies
9/17/12 Amoxicillin for Strep throat
10/24/12 Omnicef capsules once daily for 21 days for wet cough from cold. Also Flonase 2 sprays 2x daily**update**=did not finish either. Cultured PA, so stopped Omnicef to start Cipro and TOBI. Will do Flonase every other day.
11/5/12 Cultured Pseudomonas A, so started Cipro 250mg 2x a day for 21 days AND TOBI for 28 days(first time)
1/16/13 Cultured Pseudomonas again, so started Cipro and TOBI for 28 days again. (no cough)
12/29/13 Bactrim for wet cough, possibly from allergies. 14 days 3tsp 2x a day.
NONE IN 2014 YEA!!!!
Lil' Chris' Cold/Cough List
9/7/09 Runny nose for 2 days, then a cough. 10/21/09 Runny nose, only coughed when doing Vest. Up practically all night the last 2 nights. 12/28/09 Started a really weird sounding cough, no runny nose. Woke up kinda wheezing the next morning and hard to breathe. Cough lasted about 5 days and then went away with no antibiotics thankfully. 2/27/10 Started a runny nose and has had a dry cough for about 2 weeks. 3/2/10 Started wet cough and nose really plugged up and having drainage. 5/3/10 Cold and cough. 7/8/10 Cold after vaca, then turned into bad cough. 9/6/10 Stuffy nose/drainage=cold;( 9/10/10 Cough started, turned into a wet cough on 9/11 2/10/11 Has had a cough for about 2 weeks turned into a wet cough. No cold, but got headaches above right eye. 4/14/11 He caught Ayla's cold after a mini vaca w/o Vitamin D 6/6/11 Woke up with weird sounding cough which turned into a wet cough. 8/2/11 Cold & dry cough after 2 days of VBS and Church 8/5/11 Cold gone, but has wet cough now 9/6/11 Cold/Allergies turned into wet cough. 1/24/12 Weird barking cough turned into wet cough at Disney 3/21/12 Wet cough from cold/allergies-80 degrees in March 10/17/12 Started wet cough from cold. 3/7/13 Cold, no cough 5/8/13 Tiny productive cough, but we think b/c of allergies. was given Claritin and cough stopped, but still stuffy nose in AM. 6/29/13 Tiny productive cough, maybe allergies. Did excessive treatments and it went away without antibiotics:) 8/30/13 Cold, but no bad cough:) 12/20/13 Productive Cough and stuffy nose(got new Vest machine with cough pause option). May be allergies??? Crazy weather lately...60's, then 20's, etc. 12/29/13 We cough continued, so started Bactrim 2014 No major coughs, just few days after colds.
Fever on July 24th 2009-after being on Augmentin for 3 days for a cough. Fever on Sept. 14th 2009-after being on Augmentin for 3 days for a cough. Fever on May 31st 2011-after throwing up off and on, but not from soy protein??? 9/17/12 fever from Strep throat 100.2 2014-2015 Winter: 3 24 hour bugs, fever and throwing up