The "Pity Party" is over!

So after learning a bit about Cystic Fibrosis on our initial visit to Children's Hospital I decided having a one day pity party was enough. It was time to educate ourselves about CF and see how this was going to play a role in our lives forever.  The first thing that our doctor told us is that both P.J. and I were carriers of the defective gene. Here is a link to the Cystic Fibrosis Calgary Chapter's site that answers "Frequently Asked Questions" about CF in more detail.
http://www.cfcalgary.ca/faq.aspx

He also told us that if we were going to be sharing this information with friends and family to direct them to Cystic Fibrosis Canada website or the American version.  There is so much information on the internet that much of it is outdated.  There have been so many advances within the past 20 years that even within Nash's lifetime there could very well be a cure.  Nash also has the most common gene mutation which is good I guess as this is what they know the most about.

I will tell everyone, I am a bit naive about the whole thing as I try to stay off the internet and just go by what they tell us at clinic. I'm on a need-to-know basis. If I start searching around online I'm just going to stress myself out.  That is partly why I wanted to share this blog.  Many blogs out there tend to be negative, a way for people to vent.  While I know this is needed, I personally would like to read something more positive or just informative without getting all stressed out what may or may not be part of our future.  To me, Nash is a healthy boy who we just have to be more careful about in regards to germs and he has medications he'll have to take and physio he'll have to do and the rest...maybe we'll be lucky and avoid.

Did we know we were carriers?  No, we didn't have a clue. We both knew very little about Cystic Fibrosis and to our knowledge, had no family history of it.  Once we thought about it we each knew someone growing up in our communities (similar in age as us) who had Cystic Fibrosis and it made us feel a bit better thinking about how healthy these individuals were/are.

Were there any signs before Nash's diagnosis?  Besides his lack of weight gain there were no signs to us that there was anything wrong with his health.  Now thinking back it made sense as to why I would be feeding for hours and him just never feeling full. He would eat, spit up, eat, spit up, repeatability for hours at a time.  We were told to feed him every three hours from the time I had last started a feed. That would have been impossible! I recall in the beginning feeding around 16-17 hours a day!

In a nutshell what is Cystic Fibrosis?  Well, on that first day we were told so much I'm sure I only heard half of what was being said.  Cystic Fibrosis is a lung disease which also affects the digestive system.  With the pancreas not able to properly break down and digest food CF patients need to take Pancreatic Enzymes before they eat anything. In the first week of Nash being on these enzymes we could not believe his weight gain.  The goal is for newborns to gain between approx. 13-30 grams/day and in his first week on enzymes Nash gained 78 grams per day!!  CF patients also have a thick mucus which builds up on their lungs.  They do not have the natural ability to break this up, therefore chest therapy is needed every day, multiple times a day.  At this time chest therapy is in the form of us doing "percussion" on five different areas over the lungs with a cupped hand.  Surprisingly enough Nash doesn't mind us beating on his chest and it often puts him to sleep.

Nash fell sleep while I was doing physio on him