Several times a week I try to remind myself to sit down and blog. It’s so frustrating to realize how many months have gone without updating (for myself more than anything else) but then I remember that we’re too busy living, a pretty good reason to not have time to catch up!
Gavin has been so excited to start hockey! It’s definitely the highlight of his week. Since he could walk, his favorite toy has been his hockey stick. I am so excited to see him begin this new journey – as a mom of a child with a serious disease, these events of normalcy mean even more! He went from only being able to skate with the aid of a walker (three weeks before his season started) to skating across the rink. His determination to succeed has been so enjoyable to witness! I love that he loves being active, he doesn’t yet realize what an amazing impact it will have on his lungs/health, but as a mom knowing he’s “treating” himself and not even realizing it because he’s having so much fun – is pretty awesome!
He is also continuing to enjoy preschool! His fantastic teacher from last year retired (sigh) and his new teacher has been my first hurdle in the school system – at least her lack of compassion/knowledge makes it all the more clear that we need to get a 504 plan set up for him when he enters the public school system next year! But beyond that, he is continuing to thrive in a school environment, and passed his kindergarten readiness tests with flying colors! He is starting to read, and it is such a fun process to watch. He can read most three letter words and loves to sound out longer ones. It’s been a lot of repeating books at bedtime, but I can see him following the words and he loves to point out the ones he knows. He’s also a little obsessed with math. A little scary for a parent who doesn’t enjoy that subject! He can watch a basketball game – see that the score is 83-79 – know that they are four points apart and can rattle off how the team behind can tie, or even surpass the other teams points. He also can read the names of the teams scrolling across the bottom of the screen. And who said watching ESPN never taught a child something! Ha!
We are still on the emotional high of Gavin being on Kalydeco. People continuously keep asking me if we’ve noticed any changes – it’s hard. He started off so healthy that the changes will not be obvious. We’ve noticed small ones here & there, but I have to wait until the study is over before getting it into specifics. We do not get to know his sweat test results – I hope to get those eventually, as I am anxious to see if they changed! He managed to fight off one cold without any antibiotics (a first in years for him) and I only put him on antibiotics for a second one because we were out of town and I didn’t want him to spend Thanksgiving sick. Another medication, that will work in combination with Kalydeco, is on the horizon. At the rate things are going, he’ll probably be on that too (in a study or “over the counter”) by the time he is six or not long thereafter. In early stages of the study – the combination of the two meds have brought CF patients with his mutations, into the range of a carrier (just one CF gene, not two). I am a carrier and have zero major health issues with it, so this is even more of a miracle!
Even on Kalydeco, Gavin’s maintenance of his disease has not changed. He still does the same amount of breathing treatments – one hour a day healthy, or two hours a day when sick – takes the same pills, and is monitored just a closely, if not more closely. While we are getting closer & closer to that cure, or at least a control, his daily routine has not changed. Until there is long term, definitive, proof that his treatments aren’t necessary, we will not remove them from his day. As much as the extra time would be nice, risking his future health is not worth it. He will always need to take pancreatic enzymes with food, as his pancreas will never function correctly (although his dosage has slightly lowered as his body has an easier task of digesting food without all the extra mucus now!).
Health wise, Gavin has been doing great! For any CF parent, entering cold/flu season brings an extra sense of stress but we’re coping ok so far. We’ve had a few insurance snafus that have been a struggle to deal with, Casey’s work insurance decided to drop both Gavin and I from the plan with no warning. They claimed to have been following their verification dependent guidelines, but it was complete bs. We never ONCE received any information that they were going to drop us – I mean, come on. Our child has an incurable disease, do you think that we’d ever ignore a warning about loss of insurance? This was seriously the most frightening moment I have had as a parent in the past four and a half years. After hours upon hours (I’m talking 20+ hours) on the phone it was finally resolved, but it shouldn’t have ever happened in the first place. They tried to tell me to pay in cash for everything up front and they would reimburse me. First, ha – I don’t trust you to reimburse and second, his meds cost over $25,000/month – we don’t have that kind of cash! Can I just say, an insurance company’s definition of “urgent” is 4-7 business days?!? The lack of regulation with issues such as these are scary – especially realizing that it’s only going to get worse as time goes on.
Just as we figured out the insurance mess, they informed us that we now were forced to use a mail order pharmacy of their choice for Gavin’s more expensive medications. No problem, except for that fact that this particular mail order is a nightmare to deal with. It took me a week to just get one prescription filled. Not even in mailed and in our hands, a week just to “accept” the prescription. Anther 10+ hours of arguing on the phone before his medication was mailed out. Every time I would call they had another excuse to give me. But here is the kicker, they would never let me talk to someone in the processing department (“they don’t talk to the public”) and refused to tell me what steps needed to be taken to get the prescription filled. Their inability to give me a straight answer, and constant transferring of my calls, made it very clear that their “process” is a complete mess and something shady was going on. I got to to point of desperation of contacting both our state’s Attorney General and writing a formal complaint to the Better Business Bureau to get my child his meds. Not surprisingly, when they found out I had taken these steps the process moved ahead very quickly. It is so sad that it takes that much of a fight, and that degree of concern, to just get someone to “care” about my child and that he needs this medication to stay out of the hospital.
After speaking with the Attorney General’s office, they informed me that all they could really do was mediate a voluntary discussion to help fix our situation so that future issues would not arise. Yet, she also informed me that there is little to no regulation on mail order pharmacies. Yes, they have to be licensed but beyond that there isn’t much else being monitored. This is very scary! Especially since we have no choice but to use them, or we pay for the entire prescription out of our own pocket (this one medication is $5,000/month). She advised me to contact either Amy Klobuchar or Al Franklin – she too agreed that this is a scary situation and felt bad that there wasn’t any more she could personally do. She stated that yes, this is a big enough of an issue to be raising a stink about, and that both individuals would be great contacts. I don’t just want our own personal situation resolved – I don’t want any individual living with a complex disease to have to fight for their necessary drugs. I refuse to accept this pharmacy for what they are, it’s a broken system that needs to be fixed – and if no one steps up to raise their voice, nothing will ever be solved. Their ability to take over a week to fulfill a single prescription (yes, this is their normal procedure my badgering is what got Gav’s meds filled more “quickly”) before even mailing it out, taking several more days, is absurd. Especially when they are messing with the health of a four year old child. The insurance companies are not following up with these pharmacies to make sure things are going well, the insurance companies/government are also not creating any sort of regulations for them. We pay out our butts for insurance, and to have to fight a disease AND fight getting his meds is more than we can bear at times. Once the New Year hits, I’m starting the process of contacting these representatives. Wish me luck that something can be done!
We did our best to make sure Gavin had no idea about any of this, as much as he already goes through – I want him to live as carefree as possible. Had he gotten wind of this, his little caring heart would have been stressed out for his mama. I made sure to step out of hearing range when I laid into the supervisors, while he knows he has CF I don’t want him worrying about what will happen if he didn’t get his meds as needed – that’s my job as mom to worry/stress. While he grows we’ll let him become more involved in the process, but for now he doesn’t need to know.
Other than insurance stresses, and the rush of the holiday season – life truly is fantastic! We are so blessed in so many ways.