Dear dear Sierra,
I am so very sorry for the news. All the parents on here know exactly how you are feeling and the pain, worry, and concern you have. I'm going to try to respond as best I can and please do ask anything more you can think of:
1) We don't have pets and would never get them now but many CFers have them and have no issues. I'd ask the CF clinic for their opinion.
2) We didn't know our son had CF but did cord blood and we are very thankful we did. I would try to do just for the peace of mind because you never know what the science can do in the future and not ever second guessing that is well worth it, I think.
3) I work from home and after ds's diagnosis informed an employer I could not continue to teach a class which required travel and have declined other requests as well. That was my personal decision. Many though do continue to work and do day care and I'm sure they can help give you insight on their choice and how that works.
4) Our son has the same mutations. Even with the same mutations, though, everyone has a different experience. Our son's problems have been GI and not lung. Following is what his days are like from a treatment standpoint and then the first three years have entailed for us.
Typical Day: Wake up, change, dress, give Zantac for acid reflux which is more typical with CF and also needs to be controlled for enzymes to work. Put on vest and then do 30 minutes of a compression vest while watching videos and doing two nebulized inhaled medicines (Xopenex and hyper-tonic saline). (We do educational videos and our three year old is already learning to read. And I get 30 - 40 minutes of lovely snuggle time during treatments.) Breakfast time: 3.5 enzyme pills, vitamin, Miralax in water, high calorie drink, and yummy high-fat food. Usually a big poop. Then another inhaled treatment (Pulmozme). Then Play, play, play, play. Lunch and another 3.5 enzymes pills and more Miralax and water. Nap. Play, play, play, play. Zantac and Prilosac for acid reflux 30 minutes or so before dinner and then 3.5 enzyme pills with dinner. Another poop! And then play, play, play. Put on vest and then do 30 minutes of a compression vest while watching videos and doing two nebulized inhaled medicines (Xopenex and hyper-tonic saline). Books, change, bed.
Now that’s the medical routine. I didn’t mention the hugs, the kisses, the laughs, the “I love you mommy–that I got spontaneously for the first time tonight!!!
It sounds like a lot, but it’s now routine. The routine was different when he was a newborn–he didn’t do hypertonic saline and we did manual percussions and not the vest. And his acid-reflux meds were not right away. You’ll likely start just with Albuterol (it’s the cheeper version of Xopenex and if your baby has shakes/trouble as to be Xopenex) and percussions, enzymes and vitamins. After a few months then you might want to try to add Pulmozyme. The vest we started early at 6ish months and hyper-sal not until nearly 2. As you get through the first several months, do check back in and ask questions, etc. Keep an eye on his spit-ups and poops for both acid reflux and constipation–both that can cause problems for Cfers. Also, you’ll be feeding much more frequently as a newborn. (even now our 3x a day is RARE–our son just likes to pig out at breakfast, coast at lunch and do average at dinner and every time I try to add more meals it just becomes a battle and he doesn’t eat any more for the day). The first 6 months for me was really rough because I was nursing but our son wasn’t gaining enough so I then pumped and put formula with the breast milk so he got the benefit of the breast milk but the calories so it was like 2x the normal feedings because I had to pump and then feed!
For the first year, you go to the CF clinic every month. You’ll see the doctor, a nurse, a social worker, psychologist, and dietitian. They’ll culture your baby’s throat every 3 months to see if he has any bacteria and usually don’t treat the early ones (staph and h-influenza).
Health-wise our son has not had a sniffle, ear infection, cold, or flu, BUT we ended up in the hospital for DIOS (basically an intestinal obstruction) and ER another time from GI issues. Both could have been avoided had I know what to watch for. He has cultured staph since his first appointment and h-influenza on and off for 2 years.
I know this is a lot and I don’t mean it to be overwhelming–I just know I wish someone had told me all of this and you had asked. Also, there is another post that walks through the what to expect at the first CF appointment.
Three last things: I am not sure how your military insurance works but I’d strongly recommend finding out whether the CF Center you are scheduled to go to is an Approved Care Center. Go to the cff.org webpage and you can find that out and also search for approved care centers and if your center is not, I’d do everything possible to get to an approved care center. The cff.org webpage also has some great helpful information as does Lisa Green’s site (Lisa if you’re out there can you post the link??) I’d make sure you have ultrasounds to make sure meconium ileus (intestinal blockage) is not a concern. Finally, you might want to read up on the drugs underdevelopment at the cff.org webpage. There is a company called Vertex which has 2 great drugs in development that are designed to help Cfers with the mutations our dear children have. There is so much hope out there for a real treatment just around the corner.
Please let me know if there is anything I can help you with as you struggle through this. My prayers are with you and your family.
