Cystic Fibrosis is a life-shortening, inherited disorder that affects the way salt and water move into and out of the body's cells. The biggest effects of this problem are the respiratory and digestive system where thick mucus blocks and lines the organs (primarily the lungs and pancreas) causing irreversible lung damage, poor digestion, poor absorption of food and really salty skin.
Naythan has Cystic Fibrosis and there is NO cure!
Meds and Treatments
Pulmozyne 1 vial Once Daily This is an inhaled medication to help with keeping the lungs clear of mucus. This is done with his nebulizer.
Albuterol 1 vial Twice daily This is an inhaled medication to help with opening the lungs up, done before the Pulmozyne to allow the medication to get deeper into his lungs.
ADEKs 1 pill daily This is his vitamin supplement. These vitamins are those that their bodies don't digest or use well.
Zantac 1ml twice daily This is normally a heartburn and GERD helper, but when taking Enzymes helps with digestion.
Ultrase MT 12 3 capsules with all meals and snacks These are taken to help his body digest food. He doesn't digest food the same way we do. The food would go right through his body. Flonase1 Squirt in each nostril nightly This helps with breathing and cuts down on snoring caused by seasonal allergies.
Singulair 1 pill before bed This helps with the symptoms of seasonal allergies and allows easier sleeping at night.
The Vest 80mins daily The Vest helps with Chest therapy to help "knock" the mucus out of the lungs and keep the lungs clear.
Hello all dear followers. Today is trusting Tuesday! I know we didn't have any blogs for Sunday or Monday and that's because I have yet to find anyone to write spotlight blogs for me. If you would like to be featured or have your blog featured please leave me a comment so I can get with you to have you write something up. I'd love to showcase as many people as possible. So that's your challenge from me, and I'm trusting that I will find a lot of people who want to be showcased.
Along the lines of trusting people, tomorrow is clinic day. I'm quite worried about a lot of things. Naythan's having his fecal fat test re-done because the stupid lab did it wrong. So I have to take it with me to the lab up at the clinic. Oh fun a 2 hour drive with a container of poop. Not my idea of fun. Also, he'll be getting an x-ray of his bowel to see if he is having a blockage or other troubles.
Naythan also has his first PFT's done tomorrow. I'm totally not sure what is going to happen. He's not feeling well at all. I'm also worried about all the snow. The city I'm going to is expecting at least 5inches of snow and winds up to 55 miles an hour while I'm there. So I'm making sure to pack just in case of an emergency.
Today is a day of challenges. My challenge for myself is to make sure I get all the housework done this week. My challenge for Naythan is to make sure I get all his treatments done. I think he's getting sick and it's important for him to get them all the time. He's got clinic on Wednesday and hopefully he won't be sick and get stuck in the Hole (hospital). I just want him to be able to enjoy school and be able to attend next year. Right now, if he's only gone 3 days and already getting sick I'm not sure how it's going to work.
I challenge all of you to tell me what you plan on accomplishing this week and actually do it. I'll check back in with all you next week!
Frustrating is the easy word for today. I thought today was going to be a good day. I rolled out of bed on the wrong side of it. I woke up late, but lucky for me I got my daughter to school with a few minutes to spare. That's why I get up earlier than usual. The thing I am most frustrated by is the Social Security system's new rules on how back pay for children is to be used. Before it used to be that back pay was allowed to be used as the parent seemed fit. Well, not anymore. I have to open a bank account for just that money, if I need to use any of it, I have to go to the SSI office, ask in writing, to be able to use the money from the Supervisor. Even then, it can only be used for items pertaining to his disability. Which, geez, that really kills getting a new place with that money like I had planned. So, figuring I need to spend the money a different way, I've been thinking about items, that would make life easier on Naythan. I know we need a better vacuum, considering we have pets. I am thinking about a couple air purifiers and maybe some salt lamps. Other than that I'm completely clueless on things that might help Naythan. Please, my dear readers help me with things that might help him since I do have the resources to do it and get him these items now! Trust me money is no option when it comes to what he needs since it's there for him to get these things.
The next thing I'm frustrated with is that my 6 year old daughter, Lita, decided she was going to push Naythan down the stairs yesterday. Unfortunately, she admitted to it. She'll be talking about it in counseling on Tuesday. Naythan is ok, just was a little shaken up. The last thing I'm frustrated about is the fact that I'm afraid Naythan is getting sick again. He's been coughing and sneezing all day. He got his allergy meds before bed but he was still coughing in his sleep. I am hoping and praying that it's just allergies and nothing more. Only tomorrow and how he's feeling and acting will tell. He was a bit whiny and cranky today. Well, we'll just have to see.
In fashion of Treatment Thursday, I thought I'd bring up the fact of my son's SSI hearing. We finally got approved. We had to today go down and give all updated information seeing as we applied 3 years ago and a lot has changed since then. Well, since we have waited 3 years for his SSI we are getting the back pay. Well, they have changed their rules with how the back pay is used now.
Now, instead of you just getting the back pay and being able to use it for whatever you want, it has to go into a special bank account. You can only use the money for items pertaining to the disability. Well, that being said, we also have to ask for permission and it's up to the supervisor if we get to use the money for that. Unfortunately, for me, it kind of sucks. We were hoping to use the money to be able to get a new place.
Well, what I need from you my readers, what do you think would be items that would be good for us to get to help Naythan's Cystic Fibrosis. Not only do I need items, I need to know how they would help him. I am not even sure what would be needed pertaining to his disability considering now we have the money to be able to do it.
Right now my wish is for there to be a cure for Cystic Fibrosis that way my little boy can get a chance to just run and play and not have to do all the million things he has to to stay healthy. I want to be able to have a normal little boy who doesn't have to do treatments or to take the pills he has to take. I want a chance to smile each morning and just run out the door without thoughts of what things will I have to make up later, because he won't get a chance to do them this morning. I want to be able to go out to eat without having to pull out pill containers for my 4 year old to be able to eat. I want to just go to regular doctors appointments without having to go to a million more to keep him healthy. I want to be able to let him go play in the dirt, play in the mud, let him just do whatever the other kids would do. I wish I could just start over and find someone else who would have not made my child this way. Then again, I wish that I still did everything the same, because if I hadn't, my son wouldn't be the person he is today.
Today, I really wish the best for my son. For him to grow up, find his true love, and be happy. That is what I truly wish above all else.
Here for our first Trusting Tuesday.... Today I learned that I have to find enough trust in myself to learn to trust those I was leaving my son with for 1/2 day preschool. I was scared to death to send my little boy off to a place where I couldn't control the environment and deal with keeping things clean. Tons of germs and tons of sick kids. Well, I had a teacher meeting and they have dealt with CF kids before. I have trusted myself to send him. He is so much happier, and is enjoying himself at school. I am trusting his teachers to keep things clean and know his needs. They let him take his pills on his own and such, so he's happy and growing up! Maybe as we see that he'll stay healthy, then we'll be lucky and he'll be able to attend regular school next year. Time will only tell.
I was given the suggestion that I think of daily themes for the blog and write something along those themes for that day. I think it's a great idea and here is how the blog will go now:
Monday- Mommy Monday (Showcasing a new mom or every week, especially those who have CF children)
Tuesday- Trusting Tuesday (Inspirations to help us learn to trust ourselves and trust others with our CF children)
Wednesday- Wishing Wednesday (This is a day for just about anything, from things that we wish for our children, to wishing for ourselves, to wishing for life. Picture day and such for this day)
Thursday- Treatment Thursday (The different treatments that come with CF and how they are working, ideas, comments, and suggestions on how to do them better, or easier with our children)
Friday- Frustrating Friday (Let's us get out our frustrations with CF and other childhood things)
Saturday- Step Up Saturday (This day is a day to challenge myself and to challenge others to step up and do something new, or stick to a schedule, or do anything they have been putting off. Each week we'll update our progress)
Sunday- Showcase Sunday (Showcasing a new person with CF or a CF mom every week. Especially those with blogs)
So tomorrow is the day I've been dreading for a while now. Naythan starts school. I'm worried about the germs and I'm worried about the other kids coming in sick.
We've had our meeting with the teachers, they will be giving him his meds and making sure things are clean as much as they can. He's in a class with 15 other kids. One of them is bound to bring some kind of sickness to him. I'm making sure we're getting in all his treatments right now, making sure we're going to do everything possible to stay healthy. Unfortunately, I'm afraid it's not going to be enough.
I'd like some thoughts on what you did to keep your little CFer healthy when they first started school? I'm lost at what is my best idea for Preschool? The teachers said this isn't their first CF child and that helps relieve some of the stress but I'm still not sure if that's enough. Help me figure out this school stuff please!