i wish all the best for you and your baby in the future
Their daily routin is this.
Nebulizer twice a day but with different medicines so it takes them up to an hour or so to get this done. They take Albuterol and Saline mix, after that, Pulmozyme and then TOBI if it is an ON month( tobi is taken every other month) Then at night they do albuterol/saline mix, then pulmicort and TOBI if it is an ON month. When they are sick with a cough, the albuterol/saline mix is given more often through out the day and night to help break up the muccus and get it out of their system.
Along with this they do the VEST therapy, which is a strapped on vest plugged into a machine that makes the vest shakes which in return breaks up the muccus in their lungs. They do this while taking the nebulizer.
For every meal they have to take ENZYME pills, their pancreas does not produce enzymes, so these pills are vital to their health. Without them, their body does not break down the food properly and in return does not obsurb the food either. Which this causes greasy and foul smelling stolls and foul smelling gas. Also causes them stomache pains if they don't take these pills.
They also take ADEK vitamins. CF kids do not produce the vitamins A,D,E, and K.
They take prevacid for heartburn but it also helps in breaking down their enzyme pills better to obsorb their food.
My son has CF with Liver disease, so he takes URSODIAL for that.
They also have allergies, so they take nasonex and claritin.
Mon, Wed and Friday, they take an antibiotic called Azithromycin. It helps with keeping them from getting colds, bronchitis and pneumonia so often.
CF children will EAT YOU OUT OF THE KITCHEN. This I was told the 1st day the doctors explained to me what CF was. Since the enzymes don't obsorb everything they eat, they are constantly hungry, as it is as a regular kid they already eat alot, a CF kid is worse lol.
CF kids immune system is lower than the regular kid, so they get sick easily. They have a very salty sweat, so they need extra salt in their food, which also means they need to drink more water, especially in the summer. Some cf kids suffer from short of breathe but so far my kids lung functions are fantastic.
We have air purifiers around the house. Having mold in your home also causes them to get sick. Even when they don't have a cold/sick, they cough every now and then and that is good cuz it helps them break up the m uccus and take it out of their lungs.
As long as your kids are well fed, take their medication and just taken care of in general, a CF child looks just like any other kid, well mine do atleast. People tell me they look so good, they can't believe they have a disease. Not sure exactly what they are expecting my kids to look like cuz they have a disease. CF can come in 3 stages, mild, moderate and severe. Those that have moderate and severe CF have the more problems and spend more time in the hospital. Some die very young cuz of it. Seems my kids have a mild case of CF. IN their 9 to 12yrs that they have lived, they have been hospitalised each 4 times.
Cf kids may also have stomache problems. My daughter if she eats too much for her pills or has real greasy food, her stomache hurts and has greasy stools. You have to watch out for their stools, that they are not greasy or that they don't have more than 3 bowel movements a day. Greasy means they are not obsorbing their food and the more bowel movements mean they did not have enough enzymes for their body to digest it all. So ya gotta watch how much they eat. Without the pills, their good goes in the mouth and out the other end just as fast as they ate it. Before my daughter was diagnosed, she was malnutrioned, so she did not grow properly. When she was a year old, she looked like a 6month old. Soon as s he was diagnosed, she grew so quick, I could not believe it!
My kids are a blessing with or without a disease. THey are my heroes cuz they have to deal with this day in and day out. Eventually CF kids will require a lung transplant as well. That really scares me! Now they are saying that lung transplant does not prolong their life by much. Also CF kids can not be around SMOKE! I was told that basically that CF kids have the lungs of a smoker. So 2nd hand smoke is extremely bad for them. Both your partner and yourself have to carry the gene to reproduce a CF child. I was told that if I were to have 6 kids, only 1 kid would not have CF. So you may or may not have a CF baby. Once you get the routine down, it's all good from there.
Children are a blessing and if you really want kids, don't let this hold you back. Medicine is working better these days and before you know it, the round about age of 35-40 life expectancy for a CF child could be prolonged. :-)
I am 14 and I have cf. If you haven't already decided to have a baby with the possibility that he/she may have cf, then I would say go for it. I am not going to lie-cf sucks. Its expensive, scary, painful and traumatic. But what would suck even more (in my opinion) is not having life. In fact, if I had a choice to be born again but without cf, I would choose to have cf. It makes me appreciate life more, smile wider, laugh harder, and cherish every moment I have with my friends and family. It is a part of me. It doesn't define me, but it has tought me so many life lessons. My mom and dad didn't know about cf before they had my brother and I, my brother is 2 years older than me and also has cf. The first thing the doctor said to my mom when they found out that I have cf is "when do you want to schedule the abortion" but I thank the Lord that my parents let me live. You will love your child no matter what. Yah, cf sucks. Its hard. But I think that the good things just may outweigh the bad.