Most days CF (Cystic Fibrosis, see here for more information) is just part of our day and is so firmly engrained into our routine we hardly notice it. Some days though, like today, I get really pissed off about it and feel bitter and annoyed (with a small dose of self pity in there too, honestly). Sometimes this can be due to a new bacterial diagnosis, a prescription change, fighting with insurance, struggling through a treatment, or, like today, nothing! I have no reason to be any more frustrated with CF today than any other day, but I still am. Maybe I just woke up on the wrong side of the bed. Maybe it was reading other CF Mom blogs yesterday (which I never do). Maybe it was a losing a prescription battle with my insurance last week. I dunno, but here we are anyways haha. Since being pissed off and frustrated doesn't get me any where (and honestly I don't have the luxury of doing that considering breathing treatments and medecines still need to be administered) I'm going to use this blog to vent for a bit. Then I will feel better and can go back to my routine :)
I've written a few posts about living with CF from our perspective. For the most part they are pretty factual "We do A, B, and C to keep Charlie healthy", and usually they are very positive "Here's Charlie's routine, but he's doing great!". Well right now I want to dwell on the shitty stuff. The parts about CF that just plain suck, the parts that (once or twice a year) can just feel so overwhelming that you get angry about it for no concrete reason.
Do you want to know what being a parent to a child with CF is like? Well this is what it is:
* Imagine coming home from your 2 week pediatrician appointment with a clean bill of health for your 'happy and healthy' newborn, only to be called at 8pm that same night to be told that your son has a chronic illness with no cure.
* Imagine having to talk to the doctor, absorb what they're saying, and then go downstairs and keep it together long enough to coherently explain what is wrong with your baby to your significant other.
* Imagine looking at your newborn and thinking that his life expectancy is mid thirties and there is a high likelihood he will need a lung transplant at some point.
* Imagine 1-3 doctors appointments per week for the first 3-5 months of your child's life (CF Clinic, Pediatrician, Nutrition Team, Gastrointestinal Specialists, Social Workers, etc)
* Imagine having to perform chest therapy on a tiny 4 week old baby who screams and cries and doesn't understand why you're 'clapping' on his chest for 30min 2x/day.
* Imagine how pissed off you get when people toss around "happy and healthy" without actually absorbing how lucky they are to be able to say that (ie "I know I should just be happy it's nothing serious but I have to give my kid cold medicine for 3 days and it's just so awful")
* Imagine not being able to give your child a cup of milk (or breast feed for that matter), a handful of goldfish crackers, a 'bite of whatever you're having', a snack, or a meal without going into the kitchen, filling a ramekin with applesauce, opening enzymes into the applesauce and then feeding him that first.
*Imagine having a 30 minute window for your child to eat at every meal.
* Imagine having to fill your picky toddler with over 500 calories at every meal to keep his weight where it needs to be (with the threat of gastrointestinal feeding tubes looming over you if you can't do it)
* Imagine the looks you get when you order your 2 year old mozzarella sticks and french fries at a restaurant, or as you're trying to get him to eat more fries at McDonalds.
* Imagine fighting with the insurance company for prescriptions and coverage
* Imagine keeping track of the quantities and refills of 9 medications and adminstering medecine to your child 16 times per DAY.
* Imagine having to learn a new prescription regimen monthly (including some meds only MWF, some meds 2 weeks on, 2 weeks off, some meds every other month, etc)
* Imagine having to leave events early so you can get home in time to do the one hour evening breathing treatment before being overtired causes a toddler metldown.
* Imagine having to team up with your husband so you can both hold down your toddler and finish performing manual chest physiotherapy on him. Twice per day. [Thank god for the Vest BTW, sooooo much easier]
* Imagine being alone and having to hold down a screaming and crying and squirming 2 year old in your lap for 45minutes to finish his nebulizer treatment. Twice per day.
* Imagine your child being ill (seriously sick or even just an unexplained cough with no other symptoms) and having to do 4 breathing treatments per day when he already feels icky.
* Imagine spending $300/month on prescription and doctor copays
* Imagine hiring a nanny that costs twice as much as day care to help keep your son away from germs and assist with treatments.
* Imagine your son contracting Pseudomonas bacteria anyways
* Imagine knowing you will have a 25% chance of having another child with CF if you ever get pregnant again, leaving your options a lengthy adoption, costly IVF, or risking having another CF child (none of which are very appealing, to me at least)
* Imagine your son never being able to play with or meet other kids with CF because of cross contamination issues.
* Imagine having to wonder every day what it will be like growing up with CF as a family. How often will we have to be admitted to the hospital? When will his lung function decline? How much damage did the Pseudomonas cause, if any? How will we fit in treatments around school and activities?
* Imagine knowing that no matter how sick and tired you are of treatments and medications, it is no where NEAR as tired as your son is/ will be, who is chained to this routine for the rest of his life.
OKAY. PITY PARTY OVER. I swear. Some days I just want to vent and give myself a few minutes to be frustrated and then it's easier to move on. Soooooo, with my total "debbie downer" bullet points above, here are some great things about Charlie and CF (well no. not about CF. CF is the worst and I hate it. So great things about Charlie then!)
* That 'chest PT and nebulizer treatments as a baby' thing really was worth doing (despite the crying) because he knows now that he needs to do his treatments and usually it's not a big deal. Sometimes it is, like I state above, but most of the time (70/30) he's a trooper.
* Charlie is so used to taking medications that it's very rarely a problem to adminster them anymore. There have been exceptions to this plenty of times of course, but for the most part he'll open his mouth and swallow whatever foul smelling medecine we toss in there ;)
* After 5 months of antibiotics Charlie is now Pseudomonas NEGATIVE
* Charlie is above the 55th percentlile for weight and is growing and growing
* Prescription copay costs should be decreasing shortly thanks to new insurance (although I didn't appreciate the fact that they refused to cover his generic Prilosec prescription no matter how many doctors, nurses, and angry mothers called them! Grrrr)
* All the shitty stuff about CF is second nature. We're used to it, it's part of our day, and the 364 other days of the year it's usually NBD. So it's not a bad life of course, just a frustrating day for whatever reason.
Okay. My rant is over. Thanks for listening friends! I'll be back with a happy post to make up for this thoroughly depressing post soon lol