This was me 2days ago, 2weeks 3days old....
...loving the hat mum!!
Daddy went back to work yesterday :( but I'm looking after mummy, she is doing a great job. About 11o'clock the phone rings. I hear mummy say hello Elizabeth. Elizabeth is our health visitor. I think she takes over our care once Sue signs us off. I'm guessing she is coming to see us as mummy ends the conversation with 'see you later'. I have to guess this stuff because mummy never tells me, I mean why would she...I'm only her son!! Mummy then rings Daddy to tell him. Again I'm guessing here, but I think daddy is coming home early. I wonder whats going on.....yawn......I wake up from a lovely sleep to see Elizabeth staring down at me....argh.....how long has she been watching me!!! Ahh theres daddy...he looks sad.....mummy is crying....what has happened, I'm the one that is supposed to do the crying!!
I'll pass you over to mummy now as I get a little confused....
Well Elizabeth came with a lovely lady called Pat. Pat is a nurse at the Royal Brompton hospital. After a few minutes chit chat Pat begins to explain why she is here. It is 2 weeks to the day since Ethan had the heel prick (blood taken from his foot for tests) and something had shown up....that he has Cystic Fibrosis. Now like most people we just said oh ok, whats that. We knew nothing about it at all. Pat is a specialist nurse trained in cf, hence why she came. She explained as best she could but we done most of our leeaning over the next couple of weeks.
What is Cystic Fibrosis....
CF, is an inherited disease of your secretory glands, including the glands that make mucus and sweat. "Inherited" means that the disease is passed through the genes from parents to children. People who have CF inherit two faulty CF genes—one from each parent. The parents likely don't have the disease themselves. CF mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs.
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 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 (hence the weight problems to start) This can cause vitamin deficiency and malnutrition because nutrients leave your body unused.
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 like dehydration, increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and rarely death.
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.
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.
So, although it was very upsetting finding out that your 2week old baby has a life threatening condition, now is the best time to find out so we can start treatment and prevent any infections so early on. We have to go down to the Brompton Hosp tomorrow just to have it confirmed by a sweat test. Very rarely does the sweat test show that the blood test was wrong and infact cf is not present. But we can hope....
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