Warning: Post ahead is not all rainbows and sunshine. It's reality.
Being a mom with CF is hard. Being a mom is hard. Being a mom and having a full time job is hard. Putting CF on top of those things makes it even more difficult. I'll admit, I haven't been 100% with my treatments for the last few months. At the end of my pregnancy I was so tired and uncomfortable. And now, I'm just tired! There have been evenings where I skip my second treatment to get to be a little earlier and at the time, I think that's okay. Sleep is hard to come by with a toddler and a newborn, so I try to take advantage, but it sucks that I have to skip a breathing treatment to do it.
I've been back at work for only two weeks now and I just texted my CF doctor about beginning oral antibiotics. Anyone with CF knows the defeat you feel when you have to "call in the big guns". Luckily for me, those "big guns" are still oral antibiotics and not IVs, but it still sucks. I feel like CF is winning and that I'm losing.
A week ago I didn't feel the greatest. I was having some sinus drainage along with a sore throat. But with snow one day and 60-70 degree temperatures a few days later, I chalked it up to the crazy weather and maybe allergies. Everyone in our house just seemed a little extra snotty, so I didn't think it was a big deal. But when I woke up and it hurt to breathe this morning, that's when I knew it wasn't just crazy weather or allergies. My lungs are not happy with whatever has been hanging around over the last week.
So now's the big debate - what to do? The typical antibiotic I go on when feeling this way is Cipro which is not the best for a nursing mother because it could be transferred to baby through my milk....or at least that's what I think I remember from when Anna was a baby. With her, she slept longer stretches at night, so I could wait until the medication wasn't at it's strongest point and then nurse her. While at work, I pumped and dumped and she was given bottles of extra frozen milk from previous weeks.
This time around, Calvin still wakes up every three hours at night to nurse, so I'm not sure how that's going to work with the Cipro. After doing some of my own research online (LactMed) and talking with other CF mothers, it seems like the Cipro is strongest 3-4 hours after taking a dose. I think I can swing it by continuing to nurse and then giving a bottle of previously pumped milk during the 3-4 hour post-dosage time. I'll also look into giving Calvin some probiotics to help keep his tummy happy while he's exposed to some extra medicine. Continuing to nurse him is really important to me. He's doing so well nursing and I'm not going to let this bump in the road stop that. I feel like nursing my kids is one thing that my body has been able to do right, so it's going to take a lot to get me to stop. If I have to be hooked up to the pump extra over the next 10-14 days, then so be it.
As of right now, I'm still waiting to hear back from my doctor, but I'm planning on starting the Cipro asap-- hopefully tonight or tomorrow morning. I know I need it before this gets any worse. My plan for the weekend is to rest as much as possible while trying to complete my Master's assignments for the semester (since we're busy the next two weekends).
I had similar experience, my last exacerbation I found out my psuedo is resistant to pretty much all of my typical IVs, we pulled out a new to market antibiotic and I realized how I’m running out of options. It is scary having to use a new “ big gun” med due to lack of options. I hope the cipro is enough for you and you can get everything back to stable. And you do you.if that means pumping after your doses or sleeping instead of something else. Don’t feel guilty, you are doing an amazing job at balancing all of life (even if it doesn’t feel that way right now). Best of luck Colleen!
ReplyDeleteMotherhood and CF is tough! It is so hard because all medical decisions impact our children too! If we need extra rest it comes at the expense of having less playtime with our kids. If we need meds while nursing it impacts what meds we can take. Even trying to fit in more treatments means more time that we are vesting and nebbing rather than being an active parent. I can only imagine how tough it is to have two kiddos and work full time! I hope your lungs feel better soon.
ReplyDelete