On Monday, Ken and I found out that Ethan has Cystic Fibrosis. We both are carriers of Cystic Fibrosis so Ethan had a 1 in 4 chance of having the disease. We didn't know that Ken was a carrier before I got pregnant and didn't have him tested because we knew it wouldn't change anything. We've had a full week of doctor's appointments. It's been very stressful and scary. For those of you that aren't on our list to receive updates here is what we just sent out today.
We met with Ethan's pediatrician, a nurse practitioner and his pediatric pulmonologist earlier in the week and all say that he has so symptoms of Cystic Fibrosis at this point. In fact, they wouldn't have known he had CF if it wasn't for the newborn screening which lead to the genetic testing. Ethan has the classic type. 50% of all CF patients have this type and it usually involves digestive problems. We had hoped that we would go in for the sweat test next Tuesday and that it would show that he had a mild case, but unfortunately, the test doesn't show the severity. Severity is determined over time. This disease is a "wait and see" disease. All we can do is keep him as healthy as possible and try to limit his exposure to sickness. The doctors have told us that we should keep him out of public places until he's at least 2 months old and that we should try to limit his exposure for the first 2-3 years, but that we can't keep him in a bubble. He will eventually get sick either from us or from something that he comes in contact with. We can't keep him at home forever. Basically, if he gets a cold or any other kind of sickness he may be fine. It may run it's course and he may have no problem, but there's always the possibility that the sickness will linger and if it lingers he may need antibiotics to fight the infection. If that doesn't work he'd most likely be admitted to the hospital with complications. Again, for now he's perfectly healthy and shows no symptoms of CF.
For now as a preventative measure, we are giving Ethan enzymes to help digest his food
We are trying to take in all the information and take it day by day, but it's very overwhelming. We wonder how all of this will effect his life in general, but have to force ourselves to just think about today.
The median life expectancy is 38 years old right now, but that isn't an accurate gauge for him because with each generation of new patients there has been more research and treatments found to improve quality of life and life expectancy. We've been told that we need to remember that life expectancy of 38 yrs old is based on people born 38 years ago, when they hadn't even found the CF gene. He most likely could live into his 50's or 60's or there might even be a cure before that.
Basically, CF involves the pancreas, digestive system and the lungs and also any places in the body that has secretions. The mucus from sickness will gum up his lungs and any other areas of his body when a sickness lingers. He is being fitted for a special vest that will loosen the mucus up so he can work it out by coughing it up or breaking it down so he can get it out of his system. The doctor said that he will be able to work it out of his system. We need to remember that he won't one day wake up with an infection. He has to actually get a cold or something and have it linger before an infection can take place. I have to keep reminding myself of that because any time he coughs or has any kind of congestion I worry that we're on our way to an infection.
We left the pediatric pulmonologist office feeling broken. We had hoped for a mild case or a mistake. We left feeling like we needed to accept this diagnosis and move onto what we could do to take care of Ethan. We are both anxious, nervous and scared of what the future will bring, but know that as time goes on we most likely will return to feeling normal again and when Ethan has problems we'll need to deal with those. He won't always be sick. We are learning to enjoy his healthy times and trying not to think about the times that he will be sick.
Forgive us if we seem overprotective or extremely nervous, we never wanted to be the type of parents that worried about every little thing or that limited people. In fact, we had hoped to be the type of parents who would hand him around. That will take some getting used to. We have complete faith in his pulmonary team and prayer that God will give us the strength, determination and the ability to make the best decisions for Ethan.
If you want to know more about Cystic Fibrosis the website to check out is the Cystic Fibrosis Foundation. We have been told to stay away from other websites because of all the horror stories from way back when. There is a significant amount of hope for Cystic Fibrosis patients now and with more research and treatments constantly coming out we have no reason to think that they won't find a cure and that Ethan won't live a normal life for the most part.
Thank you for your prayers and support! We can feel them!
Love,
Erin, Ken & Ethan
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