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WE'RE HOME!!!

thank heavens...this is going to be short cause i'm super tired!....they took the PICC out & put Vega on Cephalexin, an antibiotic that she'll take orally...also gave her some Nystatin topical cause all the antibiotics have beyond messed her lil tummy up. everything else has stayed the same.

she seems happy to be home...as soon as the rain goes away i'm gonna let her go play outside...poor kid needs some fresh air.

....oh yeah...she did her inhaler for the 1st time @ home...she was such a big girl...she put it up to her face & even pushed the button...i'm so proud of her.

so she'll do 10days of the Cepalexin & then go to clinic & get a culture done & get looked @ so, of course, i'll keep u updated on that.

i'll write more later but my brain isnt cooperating...

the 'tune-up'

so its the night before thanksgiving & we're still here living @ LeBohnuer Children's Hospital...it's only been a week so i sldn't sound so negative...Vega has only had to be admitted into the hospital once before & that was when she was a newborn & was Dx...we've had a few ER visits but all in all for a CF patient we've been very very lucky.

6wks ago Vega got the H1N1 flu & she seemed to fight off the flu part of things but in aspects of her CF things just haven't improved...her last throat culture @ clinic grew a bunch of bad stuff so she had to be put on another round of oral antibiotics @ home for 7days then we were to come to clinic & talk w/ the doctors about her being admitted for a 'tune-up'

we were admitted last wed. to start the tune-up...mainly

the 'tune-up' consist of being on anti-biotics that can't be administered @ home & to somewhat intensify her breathing treatments & chest therapy....she had a PICC line put in on thurs. morning

& so began the 'tune-up'....she is being given 2 anti-biotics thru the PICC: Tobramycin and Piperacillin & Tazobactam Sodium...3 things thru the neb: Albuteral, Pulmozyme, and Hypertonic Saline...actually today we switched the Albuteral to the inhaler!...there is a possibility that she cld go home w/ the PICC line or they may just be able to take her off the IV anti-biotics & give them orally or thru the neb.

we were told when she was admitted it would most likely be a minimum of 14 days...

Vega is in her normal great, silly spirits & has adapted to hospital life quite well...it seems she might just enjoy all the attention..she is even getting to be helpful with things...she holds her own mask some now during her breathing treatments...doesn't mind everyone listening to her lungs & checking her oxygen levels...she loves & plays w/ everyone that comes in the room & is even cool with wearing a face mask so she can leave the room. (she realized there are playgrounds thru out the hospital & wagons & wheelchairs to ride in if she'll wear the face mask)...she is coughing more but that cld very well be a

good thing...she has tons of toys here, including her dollhouse that daddy brought up!...she isnt eating very good & has lost about a lb & a half but all in all she seems to be doing well.

from what we are told it is very common for CF patients to spend a good amount of their lives in the hospital...which isnt ideal but if it keeps her healthy & she can some what keep going like any other child that who cares..we'd love to be home but it's not so bad up here...as long as my lil star is getting what she needs to stay healthy than everything else is just...well...everything else.

thanks for all the love & support...

what is CF?...

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF

CF mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs.

Overview: Mucus is a substance made by the lining of some body tissues. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. However, if you have CF, your mucus becomes thick and sticky. ...The mucus builds up in your lungs and blocks your airways—the tubes that carry air in and out of your lungs. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs. ...The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can't reach your small intestine. ...These enzymes help break down the food that you eat. Without them, your intestines can't fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave your body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort. ...CF also causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. This can upset the balance of minerals in your blood and cause a number of health problems. Examples include dehydration (a condition in which your body doesn't have enough fluids), increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and, rarely, death. ...If you or your child has CF, you're also at increased risk for diabetes or a bone-thinning condition called osteoporosis. CF also causes infertility in men, and it can make it harder for women to get pregnant.

Outlook: The symptoms and severity of CF vary from person to person. Some people who have CF have serious lung and digestive problems. Other people have more mild disease that doesn't show up until they're adolescents or adults. ...The symptoms and severity of CF also vary over time. Sometimes, you will have few symptoms. Other times, your symptoms may become more severe. As the disease gets worse, you will have more severe symptoms more often. ...Lung function often starts to decline in early childhood in people who have CF. Over time, permanent damage to the lungs can cause severe breathing problems. Respiratory failure is the most common cause of death in people who have CF. ...As treatments for CF continue to improve, so does life expectancy for those who have the disease. Today, some people who have CF are living into their forties, fifties, or older. ...Early treatment for CF can improve both your quality of life and lifespan. Such early treatment includes nutritional and respiratory therapies, medicines, exercise, and other treatments.

*Cystic fibrosis has no cure. However, treatments have greatly improved in recent years!

Treatment for Lung Problems:The main treatments for lung problems in people who have CF are chest physical therapy (CPT), exercise, and medicines.

Chest Physical Therapy: CPT also is called chest clapping or percussion. It involves pounding your chest and back over and over with your hands or a device to loosen the mucus from your lungs so that you can cough it up. ...You might sit down or lie on your stomach with your head down while you do CPT. Gravity and force help drain the mucus from your lungs. ...Some people find CPT hard or uncomfortable to do. Several devices have been developed that may help with CPT, such as:

• An electric chest clapper, known as a mechanical percussor.
• An inflatable therapy vest that uses high-frequency airwaves to force the mucus that's deep in your lungs toward your upper airways so you can cough it up.
• A small handheld device that you breathe out through. It causes vibrations that dislodge the mucus.
• A mask that creates vibrations that help break the mucus loose from your airway walls.

Breathing techniques also may help dislodge mucus so you can cough it up. These techniques include forcing out a couple of short breaths or deeper breaths and then doing relaxed breathing. This may help loosen the mucus in your lungs and open your airways.

Exercise:Aerobic exercise that makes you breathe harder helps loosen the mucus in your airways so you can cough it up. Exercise also helps improve your overall physical condition. ...However, CF causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. Thus, your doctor may recommend a high-salt diet or salt supplements to maintain the balance of minerals in your blood. ...If you exercise regularly, you may be able to cut back on your CPT. However, you should check with your doctor before doing this.

Medicines: If you have CF, you doctor may prescribe antibiotics, anti-inflammatory medicines, bronchodilators, or mucus-thinning medicines. These medicines help treat or prevent lung infections, reduce swelling, open up the airways, and thin mucus. ...Antibiotics are the main treatment to prevent or treat lung infections. Your doctor may prescribe oral, inhaled, or intravenous (IV) antibiotics. ...Oral antibiotics often are used to treat mild lung infections. Inhaled antibiotics may be used to prevent or control infections caused by the bacteria mucoid Pseudomonas. For severe or hard-to-treat infections, you may be given antibiotics through a tube inserted into a vein. This type of treatment may require you to stay in the hospital. ...Anti-inflammatory medicines can help reduce swelling in your airways that's caused by ongoing infections. These medicines may be inhaled or oral. ...Bronchodilator medicines help open the airways by relaxing the muscles around them. These medicines are inhaled and often are taken just before CPT to help clear out mucus. You also may take bronchodilators before inhaling other medicines into your lungs. ...Your doctor may prescribe mucus thinners to reduce the stickiness of your mucus and to loosen it up. These medicines can help clear out mucus, improve lung function, and prevent worsening lung symptoms.

Treatments for Advanced Lung Disease: If you have advanced lung disease and the level of oxygen in your blood is low, you may need oxygen therapy. Oxygen usually is given through nasal prongs or a mask. ...If other treatments haven't worked, lung transplant may be an option if you have severe lung disease. A lung transplant is surgery to remove a person's diseased lung and replace it with a healthy lung from a deceased donor.

Treatment for Digestive Problems: CF can cause a number of digestive problems, including poor growth and development, bulky stools, intestinal gas, a swollen belly, severe constipation, and pain or discomfort. ...Nutritional therapy can improve your strength and ability to stay active. It also can improve growth and development in children. Nutritional therapy also may make you strong enough to resist some lung infections. A nutritionist can help you create a nutritional plan that meets your needs. ...In addition to having a well-balanced diet that's rich in calories, fat, and protein, your nutritional therapy may include:

• Oral pancreatic enzymes to help you digest fats and proteins and absorb more vitamins.
• Supplements of vitamins A, D, E, and K to replace the fat-soluble vitamins that your intestines can't absorb.
• High-calorie shakes to provide you with additional nutrients.
• A high-salt diet or salt supplements that you take before doing vigorous exercise.
• A feeding tube to give you more calories at night while you're sleeping. The tube may be threaded through your nose and throat and into your stomach. Or, it may be placed directly into your stomach through a surgically made hole. Before you go to bed each night, you will attach a bag with a nutritional solution to the entrance of the tube. It will feed you while you sleep.

Other treatments for digestive problems may include enemas and mucus-thinning medicines to treat intestinal blockages. Sometimes surgery is needed to remove an intestinal blockage. ...Your doctor also may prescribe medicines to reduce your stomach acid and help oral pancreatic enzymes work better.

Treatments for Cystic Fibrosis Complications: A common complication of CF is diabetes. The type of diabetes that people who have CF develop often requires different treatment than other types of diabetes. ...Another common complication is the bone-thinning disorder osteoporosis. Your doctor may prescribe medicines that prevent your bones from losing their density.

so thats a crash course in CF...hopefully this will better help you understand some of the of what goes on in Vega's life...& clue you in to some of the things that may come up in future post...

well hello..

so i probably sld have started this 2 & half yrs ago...but better late than never...right?!

i'm Becky...my amazing daughter, Vega was 2 in July & was Dx with CF in the 1st week of her beautiful life. We had a home birth & had planned to since the very beginning...it was wonderful, painful but wonderful...she was perfect, our lil princess Vega was finally here!...her daddy & i just laid in bed with her in between us sleeping...both of just staring @ her...i remember thinking for the first time in my whole life that everything was perfect..peaceful...i was put on this earth to love her.

....we took her into the hospital @ 30 hrs old b/c she hadn't yet had a bowel movement...she was still eating & sleeping & seemed to be content with her new lil life so i wasn't real worried...thought they wld give her something & we be home in no time...WRONG...with in like 20 mins we were back & they were sticking my poor lil baby all over the place, she was crying so hard...i felt so helpless then they told us she had meconium ileus & that often times this was a sign of CF...what the **** is CF?!!...i cld tell it was something serious by how they talked to us but i had no idea what it was...over the next few hrs & days i got a lil crash course in medicine...& with in a week the test results were back & my lil princess for sure had CF.

...i had always complained about the city we live in (& still do) but our city is home to an amazing childrens hospial, LeBonhuer. & our CF clinic is directly across the street so Vega recieved exceptional care & we learned a lot & honestly i felt a lot of support & strength from the staff...is was such a blessing in such a scary time...

so thats how it all got started...she's 2 now & has been pretty healthy so far...i've learned so much in these past 2 yrs...not just about CF but about life & whats important...it really puts thing in perspective!...we've had our fair share of rough patches, but thats life. i feel like as momma i'm supposed to be her rock but in reality it's her that gives me strength...