Hi, everybody, my name is Bianca and I just joined cafemom so that I could specifically join cf moms. My son Esteban is a vibrant 5 year old that was diagnosed at 2days old. My baby Maya is almost 2 and does not have cf. This evening Esteban had a coughing "episode" where he just constantly coughed. I upped his treatment then called an on call nurse after he threw up a lot of mucus. Honestly, it feels weird typing all these details that I know are gonna be read by a lot of people I don't know, but... it's just one of those nights, you know? When you have to talk to another mother, especially another mother who has gone through the same stuff as you. Thanks for listening. And I will be here when someone else needs to talk.
Hi Bianca...I'm so sorry that you're going through this rough time with your son! I will say that I joined this CF mom group for the same reasons you did, but I get the feeling that not many moms are on here much, which I can totally understand! I made a short post when I first joined but no one responded, so I didn't want that to happen to you!
My name is Darby, and I have a 16 month old son named Brady that was diagnosed with CF when I was about 6 months pregnant. I don't have near as much as knowledge as you do about CF since your son is so much older than mine, but I'm definitely here if you need someone to talk to! My e-mail address is - jdkeep08@gmail.com, and you're welcome to contact me anytime you need to! I get my e-mail on my blackberry, so I'm really good about responding fairly quickly.
Brady has been sick quite a few times, but only hospitalized once when he was 4 months old. He does several breathing treatments (pulmozyme, albuterol, pulmicort) and he does the vest treatment too. Honestly, he's been coughing quite a bit lately, but his is more of a dry cough, but it's persistent and it tends to be sporadic and last several minutes. He also has asthma so it could be related to that...not sure.
Please let me know how your son is doing and what the doctor has said! I will definitely keep you guys in my prayers this week!
By the way, www.cysticlife.org is a GREAT website that's very similiar to Facebook that is just for CF patients, family, and friends! It's been a great source of information for me...you can post topics, questions, etc. and there are SO many people that respond very quickly with great advice!
Have a nice weekend!
Hi, Darby! I really appreciate you responding. Thanks for telling me a little about yourself, I am gonna take a look at that website you mentioned. Thankfully, today was a wonderful day without coughing! Esteban has asthma with cf also, so with the allergies in Texas, I think it just created a perfect storm for coughing and getting stuffed up. He's alo on albuterol and pulmozyme wich he does after the vest. Yes, my son is older than yours, so I have been dealing with cf longer, so please feel free to reach out to me whenever you want. Truthfully, we've been very blessed because dealing with cf in our daily lives is more of a habit or routine than anything else. (Creon, vest, school, vest again.) The only time it's hard is when my son is coughing a lot, I just can't get used to that. But those times are few and far between, thank God. Anyway, thank you very much for responding, I hope to talk to you again soon!
Hi, my name is Janet and I am not on this group as often as I would like to be. My son is 12 and was diagnosed with CF when he was 5. Although his CF is mainly in his digestive system, and his lungs are very good. I will try to get back more often to help support the moms that need help.
I know when my Sean gets a cold, it is hard because it lasts longer than healthy kids, and those boogers are thick and long. His sinus' get infected all the time, and we also found out he has MRSA colonies living in his nose mucus. Thank God I switched pediatricians who is more on top of Sean's condition, and our CF doctors are the best too. Always there for support when we need it.
I will try my best to check back daily for all those moms that may need support, or have questions.
Welcome to the group--even though it is one we all wish we weren't part of. I joined pretty much for the same reason. Sometimes I just need to communicate with people that really understand. I can talk to some of my friends but they don't get it. My CF son is only 8 mos, so we are still new to this game. I just found out I'm pregnant --surprise!--and now I'm worried about having another child with CF. My first isn't even a carrier... hoping the odds are in our favor this time. It's hard enough with one...don't want to think about having to go through all of this (especially the emotional stuff) with 2!
Just want you to know that we are hear when you need us!
Hello Bianca,
How's your son doing? Better I hope...... I try to check here every few days, but my computer was sick this time. Not quite as expensive as a my CFer, lol
My son is 11 and dx at age 3 1/2, so we've been through alot of those nights where the coughing doesn't seem to stop. Sometimes it's just what he got into that day too. He recently spent a day helping clean a 100 year old playhouse (with his dad, I wouldn't have let him in all that dust) and came home sick for four days. Extra treatments and a few sleepless nights were all it took to clear him up this time, thank god!
It seems like you did all the right things, but I know how it is in the middle of the night when your wondering how bad is it going to be this time and feeling helpless to easy your childs discomfort............I hope you enjoy this group and feel free to ask away. I'm sure one of us will have an answer or a similar situation to relate to. We've all been there and understand what your going through and sometimes that's all you need is someone else who understands.
God Bless
Thank you so much to everyone that responded. I'm just coming off a week of non-stop worrying, crying, asking God why... But today's a new day, my son's on antibiotics and getting better so everything looks great again. Yeah, we just need to support each other, because it's just too big to handle on our own. I wish everyone one of you blessings, blessings, and more blessings! : ) Thanks again and I'm here for you all too.
It's wonderful to meet all you awesome moms who have very special children! Thank you so much for your posts and positive thoughts as well as support!
I'm new to this journey as my son Brady is only 17 months old and was diagnosed prenatally.
Does anyone have any suggestions on how to get Brady to eat better? He is VERY picky and he ONLY eats yogurt (whole milk, of course) and applesauce. He drinks whole milk w/ carnation instant breakfast to increase the calories. That's ALL he eats/drinks! If I try anything else, he just closes his mouth and turns his head! It's so frustrating!
Hi, Darby, it sounds like you're doing everything right, but at that age, they're just really picky. The only thing I can think of that might help is to add some of those oatmeal or mutigrain cereal mixes to his milk, maybe switching back and forth between the carnation. It's hard at that age, but I hope this helps a litle.
The truth is 1-3 year olds have their own eating styles, lol From 14 years of babysitting experiance I would say that anything with more then 3 ingredients is a waste of your time. Luckly your CFer can have high calorie, high sodium food without you feeling guilty for giving him junk food. Hot dogs and grilled cheese, PB and J's, french fries and ice cream smooties, buttered noodles or any other finger food are all good. Just keep it simple and try not to let the foods all touch, lol
I really wish I hadn't stressed so much when our CF doc had wanted to give him a feeding tube. I fought the idea and now I've hear from other parents how much easier it is to keep them at a healthy weight when their sick. Making sure they get the nutrition they need even if it's in the middle of the night. When my son has pnumonia and stops eating good or when the strong antibiotics give him diarriah, it would be a relief if I could make sure he is getting what he needs whether he's hungry or not, lol
God Bless
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- bmaldo22
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