Here we go again...

We're heading back to the hospital tomorrow for two weeks. AHHHGGGHH!!!!! I don't wanna go. I just wanna be at home and live our lives and not be bothered with CF and all of the nonsense that comes along with it.

A couple of weeks ago Drew got his first cold. I thought he was getting better, then he started to sound bad again. They put him on antibiotics about 10 days ago and expected that to clear things up, but he still sounds terrible. Hes happy as can be - eating fine, no fevers, happily playing - but sounds like hes got a permanent frog in his throat. So we took him back to the doctor today and they decided that they wanted to get rid of this once and for all and that IV antibiotics would be best to do that.

He hasn't got some life threatening cold (disease, yes; cold, no) that is going to bring him down. Hes simply got a ton of mucus in his throat and lungs and belly and they need to make sure that whatever bacteria is causing it gets taken care of before it sets up shop and starts to cause lung damage. There were several options and the IV antibiotics is where we are starting. Hopefully by this weekend he will sound much better and "cough-free" will be his baseline by which we can measure future colds and infections.

Another option that was discussed was a bronchioscopy where they would put a tube down his throat to collect some mucus and culture it to see exactly what bacteria there is and treat that specific bacteria aggressively. Without doing this, they won't know exactly what's down there but they are hoping to aggressively treat with a strong mixture of antibiotics that would attack and kill what could likely be causing th problem. I'm hoping this plan works because if it doesn't then they will do a bronchioscopy and that requires time in the OR and a breathing tube so that they can collect what they need from deep down in his lungs and i'm hoping we don't have to do the whole "kiss goodbye before surgery" ever again.

I asked the doctor if this is an indicator of things to come and the answer was most decidedly no. She said that sometimes kids (even kids without CF) get colds the come with a cough and the cough just lingers. That may very well be what this is. It doesn't mean that hes gonna be in the hospital again next time he gets a cold, but it also doesn't mean he won't. We are just going to treat aggressively because the longer we can go with healthy clean lungs the better things will be. It was a good meeting with the doctor today, even though we didn't want to hear that we will be heading back to the hospital for 2 weeks.

I'll post an update when I have a chance. Say some prayers for a speedy recovery, and a cold-free and healthy future.

A Rant

Its been a long week. Its been a long couple of weeks. Drew got his first cold about 2 weeks ago and we're still struggling through it. Hes taking antibiotics and we've increased his CPT to 3-4 times a day, after using a nebulizer and Albuterol and saline. It takes close to an hour to do all of that...3-4 times a day. And the poor guy is only awake for about 2 hour at a time. He takes between 15-30 min to eat, so when we have to add the CPT process he simply wakes up, eats, takes meds, gets his chest therapy, and goes back to sleep. I hate it.

I've spent hours (yes, literally hours) on the phone with insurance this week trying to get everything with our mail order pharmacy sorted out, and I still don't think its right. There are 10,000 things I could have used that time for and I'm bitter that I'll never get that time back.

I talked to another CF mom and another friend with CF (just turned 49!!) this week about my obsession with germs lately. I just can't seem to figure out or be settled with how i'm going to deal with germs. I wanna ask people to wash their hands when they come into my house. I wanna ask people not to touch him when we're out in public (which is very infrequently). But I haven't gotten that comfortable with that yet. And I think its because I don't want people to think hes weird or different or that there's something wrong with him. But I also don't want him to get sick. There is incessant hand washing and sanitizer use. Our doctor said that since we are his handlers, our hands are most important right now, but when he starts crawling that we will just need to try to make sure his toys are clean and we wash his hands a lot. I know hes gonna get sick, and colds and stuff are in a way good for his immune system. He needs to build up some resistance. But this routine of caring for him when hes sick suck. And I'm sure that this isn't as bad as its gonna get. But they gave me some good perspective and told me that I will figure out what works for us and I know I will. I'm just ready to know how its gonna be

I shouldn't complain. There are a million people who have it a lot worse than I do. But I just wanna complain. I'm tired of this already and its just starting. I'm tired. I'm scared. I'm annoyed. I'm broke. I'm hopeful. I'm scared. I'm hopeful.

2010 Cystic Fibrosis Foundation Commemorative Bracelet

As I had mentioned a few weeks ago, we were paired with 3 of the nominees for the Cincinnati Finest Young Professionals Fundraiser. Basically, all nominees are charged with raising at least $2500 for CF and whoever raises the most at the end of 3 months wins the title of Cincinnati's Finest Young Professional.

One of the people that we have been honored to share our story with is a man named Jimi Merk. He is a custom jewelry designer and he has created a stainless steel charm for the CFF Bracelet and will be donating all proceeds to the Cystic Fibrosis Foundation. The bracelet and charm are available on his website for a $20 donation - jimeyedesigns

Other events that Jimi will be hosting in the Cincinnati area to raise money for CF include

• The 65 Roses Canoe and Kayak Trip - July 18 - Green Acres Canoe Rentals
• Caving for Cystic Fibrosis - July 31
• Masquerade Ball & Art Auction - August 27 - Brylan's Coffee House Cafe' in Newtown

I will post more information about these events as they get closer, or if you are interested in attending any of them and have questions, feel free to email me and I will get you the information that you need.

FUCF

I'm so annoyed. Everything I've read and everyone I've talked to related to CF has told me that dealing with insurance is a nightmare. We haven't had any problems...until now. We got a notification in the mail yesterday that told us that Drew's meds weren't being covered by insurance anymore unless we started to use Mail Order. No problem! I'd be happy to get a 90 day supply and not have to worry about it but 4 times a year.

So this morning I called the Mail Order Pharmacy to discuss what I needed with them. On Friday, our CF Clinic sent in a 90 day order for his Creon (enzymes). I was finally able to get a hold of someone today after 4 days of trying to get through, and they apparently never received the script. They said they would call the doctor and get it all sorted out and that I would have my 90 day supply in about 2 weeks. Thats gonna be a problem as we only have enough to get us through the rest of this week. However, if I try to get them at CVS down the street I have to pay full cost for them because insurance is only going to cover them if they are mail ordered. After some screaming and yelling, I got them to put an "override" in the system so that we could get a 30 day supply at CVS to hold us over until the 90 day supply arrives.

Then we started to discuss the kids heartburn medicines that we also received letters about. Lily is on it for reflux, but Drew takes it because it neutralizes stomach acid so that the enzymes aren't broken down in his system before they do what they need to do. Drew's is refrigerated, and apparently compounded at Children's. So my options are to either switch medications to something that comes in a liquid form, or have the mail order place break it down for me from pill to powder and mix it myself at home. I'm annoyed because the stuff we get from Children's is so easy and convenient and I don't wanna switch meds and I also don't wanna add another step to my day! I finally agree to just call my doctor to discuss what the best option is. But then the discussion of how I'm going to get this before 2 weeks and I'm on hold again while the man on the other line tries to get override approval for this as well so I can get 1 more 30 day supply at Childrens.

Lily's meds are available, it will just take 2 weeks to get them. Hopefully we have enough to last us that long.

I'm just annoyed because the convenience of CVS and Children's being right at my fingertips is being taken away from me. I know mail order can be convenient, but TWO FREAKING WEEKS to get a prescription?! I am just going to need to be careful to recognize and remember when we're about 2 weeks from running out. Also equally annoying is that with the Creon, he takes a similar amount every day, but not always the same, and its regularly adjusted. So for example, right now, every time Drew has a bottle, he takes 2 pills of Creon. However, as he gets bigger and the calorie content or the quantity goes up, he may take 2 and a half pills or 3 pills with every bottle. The problem is that if the prescription is written for like 10 pills a day and we get enough for 90 days, when he starts to take more pills he will use up the supply, but when I go to reorder they will tell me that its to early to reorder. SO ANNOYING!

Another pain in my ass is that I have a Creon rebate card, where the manufacturer of Creon will refund you $50 every month for 12 months for your prescription, however the mail order pharmacy will not accept secondary insurance, which is what they consider this. My copay for the Creon is less than $50 for a 1 month supply through mail order, so I could get it for FREE if they accepted the card, but they don't accept it. They said I could call the manufacturer to see if they could issue the rebate. That sounds like a reasonable solution, if I didn't have 3 kids and 1000 things I was already managing to make sure that everyone stays happy and healthy. I'm just so annoyed.

When I hung up the phone with the man, who was actually very nice, I looked at the call timer and it was 1 hour and 23 minutes. SO ANNOYED!!! If there was no CF there would be none of this BS nonsense. So FUCF, FU.

Lily - 0; Drew - 1

Drew gets the award for first to roll over! He did it this afternoon shortly after waking up from his nap. I was sure that we were going to need PT to help him with things like rolling over and sitting up, just because he is a little weaker than Lily from the time spent in the hospital and the surgeries to his abdomen. But it sure doesn't look like that's going to be the case and that's delightful! He went from belly to back, and i'm pretty sure it scared the sh*t out of him because he started screaming at the top of his lungs after it happened. Then Lily started screaming, but I think mostly because she knew all of our attention was on Drew and shes a bit of an attention hog :). But I was so happy, so proud. It helps me to see that hes going to do all of the same things the girls do, that he going to be "normal". Love you, boy!

First of Many

Drew got his first cold this week. I knew it was coming so we just embraced it rather than freaking out. The girls got colds too, so rather than panic and call the doctor right away, we decided that we should just let it run its course.

We had discussed with Drew's doctors the course of action that would be taken when he did get sick. They told us that they treat based on symptoms and that not ever cold would turn into a problem. They said that we would should just keep an eye on things for about 5 days, and if they weren't getting better or started to get worse that they would want to see him.

The cold started on maybe Thursday or Friday. I got nervous, but we just increased his CPTs to 3 times a day and kept an eye on him. He had a clinic appointment scheduled for Monday so I figured that they would be able to check him out then if things hadn't gotten any better. By Sunday he was sounding pretty rough and his breathing seemed labored so I was glad our appointment was at 8am.

The doctor listened to his lungs and said they sounded clear. He honestly sounded better on Monday morning than he did all day Sunday. We decided that it was probably just a cold, not anything worse, and that we would skip antibiotics. [clarifier - antibiotics wouldn't do anything for a viral cold, however the increase in mucus provides the perfect breeding ground for bacteria that would be killed off by the antibiotics] However, it was also decided that we should start using a nebulizer before CPT to moisten his airways and help to loosen the mucus. They gave us saline and Albuterol. We spend 10-15 minutes using the nebulizer now before we do his 30min of CPT 3 times a day. Thank God he is such a laid back kid. He doesn't seem to mind the mask on his face and it sure does make him sound better. It does kind of suck that we have to use it now but if it helps him thats whats important.

They also did a throat culture. They do these ever 3 months to see whats going on in his lungs. So far, there's only staff. It sounds horrible to me, but they say they expect it in CF kids. Bad things they could find include Pseudomonas. Its is a type of bacteria that is of concern for persons with CF. It causes frequent lung infections, which leads to damage to the lungs. B.cepacia is the really bad one. B.cepacia bacteria are often resistant to common antibiotics. B.cepacia poses little medical risk to healthy people. However, people who have certain health problems like weakened immune systems or chronic lung diseases, particularly cystic fibrosis (CF), may be more susceptible to infections with B.cepacia. B.cepacia is a known cause of infections in hospitalized patients. The effects of B.cepacia on people vary widely, ranging from no symptoms at all, to serious respiratory infections, especially in patients with CF.

Presumably nothing new was found with this culture. They said they would call by the end of the week if they saw anything, and we haven't heard from them which works for me.

He seems to be doing better. Hes still coughing a little more than normal but its always hard to tell what his normal is because its always going to be changing. But hes doing better so I'm happy.

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