Friday, February 10, 2012

Let's work together

Its been another crazy week here in the Moore house! We still have lots of coughing and runny noses from all 3 kids. All are now on antibiotics with Lily's bronchitis diagnosis today. Hopefully we will be sleeping all night again soon because mama needs some rest.

Drew's sinus surgery is scheduled for next Friday. I had planned a little birthday party for the twins for next Saturday before we knew when the surgery was going to be, and then had to move the party. I just don't know how great he's going to be feeling the morning after his surgery. I hope he's already feeling better but I didn't want to roll the dice and have a house full of people if he just wanted to lay around. The ENT doctor called me yesterday to tell me that anesthesia said they wouldn't do his surgery given his recent lung infection. I about had the baby at that very moment. He's got CF! He ALWAYS has a lung infection! He had an increased cough and is on antibiotics for some staph that they found on his culture, and guess what - he's sounding much better. Anesthesia said they wanted to wait until after March 5 to schedule the surgery and I said that just straight up wasn't going to work. I assured the woman that he's had far more complicated procedures done under far worse circumstances, and if I had to put him under myself, we were having this done next Friday. To some of you I may sound totally unreasonable, and being 35 weeks pregnant automatically makes me a little unreasonable, but seriously, this poor kid has had a chronic stuffy/runny nose since about October. He can't taste, he doesn't want to eat anything, and the junk that's been running out of his nose for so long has his poor nose raw. I want him to get better. Waiting longer means staying away from other kids or other public places where he could pick up more germs because another cold means the surgery would be pushed back even longer. I'm not being totally selfish in wanting this done before the new baby comes. I just want him better. Honestly and truly.

So the ENT nurse said that she would talk to anesthesia and call me back today. I hadn't heard back from her and around 2 I decided to call. She hadn't heard any updates from anyway so I took matters into my own hands. I called his pulmonary nurse who contacted his doctor, who immediately called anesthesia to get this all sorted out. Anesthesia agree to keep the surgery as scheduled if pulmonary would see him the day before and clear him for the procedure, since they know him best. Of course there is always a chance that he's sick or doesn't sound great and they don't want to do it, and I'm perfectly okay with that.

I hate the social limitations of CF. I hate having to ask everyone that comes to my house if they are healthy. I hate being stuck in the house for big parts of the cold and flu season. I hate passing on birthday parties because I can't control whose going to be there and don't know what kind of germs we could pick up. I hate wiping down my 3yr old before she gets into the car after preschool. I hate having Clorox wipes in my diaper bag and cleaning off high chairs and tables and anything else within reach when we go out to eat. I really do try to stay as "normal" as possible, participating in as much as we can and just being careful to wash hands and wipe off what we need to, but there is that fear in the back of my head that trying to be "normal" socially will land us with some funky bacteria and more trouble than its worth. And not more trouble as in a pain in the ass for me, but more trouble as in a serious lung infection and time in the hospital and decreased lung function and all of that stuff. I hate that we can't plan anything, or if we do plan stuff we have to be ready to cancel. I hate the disappointment that that brings to everyone, self included.

Switching gears just a bit, I'm a little disappointed about the way my fundraising has started this year. Last year, once the emails were sent and the video was posted, donations came flying in and walkers were signing up left and right. This year it all seems to have come to a screeching halt. People are always asking me what they can do to help and this is what you can do. You can sign up to walk with us. You can help us to raise awareness and money. I know fundraising can be awkward and uncomfortable. Share our video and our story. Here is the link to an inspiring story about a father who fund raises for his son who lost his battle with CF when he was 10. Another mom whose blog I read has grown her team in the past two years since she lost her 7 year old. Another mother posted the eulogy she read at her son's funeral when he passed away in January. He was 2. I know the statistics say that Drew has a 50% chance of living until he's 37, but precious children continue to lose this battle everyday. The thought of not doing all that I can to save him pains me. If we don't already have a team in the city you live in, you can create one for us! You can share our story and spread awareness and help us to raise the money we need to cure Drew. So many people I've talked to say that they don't have time. I don't have time not to. I will do all of the work for you. I will give you a letter to send out. I will share our video with you to post on Facebook. I will give you suggestions for different fundraisers you can hold. I will help you if you will help me.

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