Quick Health Update

We all got to spend Christmas at home!! The combination of steroids and antibiotics has seemed to improve things. Drew still has his moments where he seems to struggle greatly to breathe but nothing near as desperate or worrisome as a few days ago. The plan was that if he had gotten worse we would be admitted to the hospital, or if by Tuesday he hadn't gotten any better we would admit him to the hospital. We're not totally resolved but hopefully we're on the right path. We'll talk to the doctors tomorrow to see what they think and take it from there! Hoping for a happy new year!

2010

Its Thursday night. Christmas is Saturday. Life is not quite as holly and jolly in the Christmas spirit as I had hoped it would be. Ella went to bed last night without any of her "guys". She doesn't listen. Ever. And I'm sick of it. I know she's 2, but i'm a good parent and I'm determined to raise the girl with some respect. There are a number of behaviors we need to work on changing, but listening is by far the most out of control. She's TWO for crying out loud and shes got more willpower than anyone I know. She gets threatened. She gets time outs. There are consequences. But in the end it feels like we are always the ones who end up feeling bad and making excuses for the way she behaves. After all, shes a direct reflection of my parenting skills, right?

We watched a lot of TV today. No one here feels good. Everyone has terrible colds and no one is sleeping well. Drew's health is questionable and no one really knows why or how anything he catches is going to affect him, beside negatively of course.

I hardly got anything for the twins for Christmas. We already have so much, plus they don't really know. Santa will have something (4 items to be exact) for each of them under the tree so that Ella can see that he brought gifts for everyone, but thats about it. Martin and I didn't get each other anything either. Well, a few odds and ends - new coffee mugs, a rice cooker, some socks and the standard toothbrush in the stocking. We don't need anything, and frankly what we want doesn't even really even come into consideration anymore, what with all the other needs we have, respectively named Ella, Lily & Drew.

Gosh its been such a crazy year. In January, I remember thinking, "I'm HUGE!". I remember going all kinds of places with Ella - out to lunch with friends, the museum, the zoo, music class, story time. We were best buds, Ella and I. I could not imagine a more perfect world.

In February, I recall thinking to myself, "There is no way these babies will be in me until April. I later realized I was right.

On March 13, around 1am, I started having contractions. Martin, who had long since moved into the guest room, was notified around 5am. I wasn't really in pain or anything, but I was definitely having pretty regular contractions that weren't going away. Two days prior, after every test under the dun & no centimeters dilated, I was told that I might actually carry these babies to term. We got to the hospital just before 7am and I was 4cm. I was 35 weeks and 6 days.

Almost 24 hours after my first contractions at 1:45am on the 14th, my beautiful Lily came out screaming. We learned that this would be her defining characteristic for about 9mo. Around 3:30am (2:30 actually if you don't count daylight savings that happened) the docs went in after Drew. My little 5 pounder came out with a shriek as well. Two new babies - a boy and a girl. Twenty four hours of labor. My wonderful little family was now 5.

I held them both so close. They were so tiny but I still couldn't believe that they were both inside of me just hours ago. My Ella came to see them. I couldn't imagine a more perfect world.

Then came the lack of poop, emergency transport to Children's, Drew in an incubator, Lily at home without me and just 2 days old, a Baptism in the NICU, a kiss goodbye before surgery, a tight embrace after surgery, repeat, a diagnosis, 31 days at Children's, my whole family at home, a leaky ostomy bag, Drew back at Children's, Ella's second birthday, my whole family home again, Drew back in the hospital, a formal baptism and birthday party, good news, bad news, back in the hospital, heart surgery, Ella starting preschool, back in the hospital, back home, a family trip to Philly, a Thanksgiving with just the 5 of us and WAY more food than we needed, colds for everyone, many trips to the doctor and urgent care, wrapping Christmas presents, praying we all get to celebrate Christmas together at home, even if there aren't many gifts to open.

There is so so much more about this year that I both loved and hated. I love how much time we got to spend with our families. I hated the reason. I loved the outpouring of support we received from friends. I hated the distance from others. I loved watching Ella grow and learn and love her new brother and sister. I love the admiration in their eyes when they look at her right before she steals their toy away or knocks them down. I love our cleaning ladies. I love how much more I know. I hate how much more I worry.

I remember sitting in the hospital those first few weeks thinking, "This changes everything. I'll never be able to go out and have fun anymore; there's something more important." I felt selfish for going to get my hair cut shortly after Drew got home from the hospital. I remember thinking, "Things will never be the same." But I know now as I look back that sick baby or healthy baby, things weren't going to be the same anyway. We have our new ways of doing things, but we're still the same people. This year may have changed me a little (ok, a lot), but so what?! Maybe this is who I was supposed to be all along. Are there days when I wish that we didn't have to do all of the shit that we do on a daily basis? No doubt! Are there days when YOU wish you didn't have to do all the shit that you do on a daily basis? You'd be lying if you said no.

This year I've had more people that I can recall tell me what a great job I'm doing and that they could never do what I am doing. But you could. I always thought the same thing. When you're in it, when its you, you just do it. When you love, you just do it with your whole heart. When you cry, you cry hard and real. When you have kids they just are a part of you and you just do it. You kiss and bandage imaginary boo boo's. You give out hugs like you use to give out unsolicited advice and opinions on shoes or TV show's or the latest office gossip. You just do it and no part of you can imagine not.

When we got the word that this thing called Cystic Fibrosis was going to be a part of our lives way back in March, for many weeks and months I think that I feared the worst. I feared losing him. Its not that I don't ever think about that anymore. When you're faced with a terminal illness, its hard to avoid talk of things like "life expectancy". I don't really think about it anymore. With every step forward or ever step back, I just have to keep looking ahead - ugh, the hospital again, okay so what's the plan, what do we need to do. I don't plan his funeral or imagine a Christmas without him. I can't and I won't live like that. He's my son just like Ella and Lily are my daughters. It someone gets sick, we wipe noses, administer meds and keep on truckin'. I can't explain to you when or why or how it all happens, but its just how my life goes. Fighting CF is at the top of our list of things to do, but its just a part of our life, its not our entire life. The second that I cry about it, the second I treat him differently, the second I let my imagination take over, I've given in. I have my moments, but there's so much I miss when I get stuck in those moments that I've been able to overcome them and just live my life.

What would be most awesome for 2011 is the continued support of family and friends. Walk with us in Great Strides. Attend a CF benefit in your town. If you stumble upon a few extra dollars, consider making a donation. The CF Foundation is SOLELY responsible for the advances in medicine and treatment and is supported by us alone. One child dying everyday from CF doesn't qualify as important enough for government support, so its up to us. I started this blog to raise awareness and support for Cystic Fibrosis because without it there is no hope. If just one person reads our story, if just one dollar finds that cure, if it buys us just one more day, then to me its been worth it. I hope you keep reading in 2011. Peace out till the new year!

The Plan

Things change so quickly. On Monday we got a clean bill of health from the CF docs. Drew was just starting to get the cold that the rest of us have and sounded atrocious, but his lungs were clear. Now, 3 days later, hes retracting when he breaths, pulling in around his ribs and his nostrils are constantly flaring. Hes coughing so much to no avail. I took a video of him and sent it to his docs so that they could see his obvious breathing distress and we finally heard back with a plan...

All of his cultures came back clean which is great. So more likely than not what he's got is a virus. Its not a CF related thing, but his weird small lungs (which I promise to post pictures of and better explain soon) aren't able to handle the attack. Since he seems to be getting worse, there is concern that some bacteria is starting to grow. We're starting him on antibiotics again today (he was off for almost 36 whole hours!!). If he gets worse - doesn't want to eat, seems to be in true distress, only wants to sleep - we go to the hospital to get admitted for IV antibiotics. If he has not changed by Tuesday we go to the hospital to get admitted for IV antibiotics. If he gets better (please pray he gets better) then we are home free. I would love to not have to get admitted at all, but if we do have to I hope that its not until after Christmas. Will keep the blog up to date on his status.

I'm tired

Everyone is sick and I'm exhausted. Ella sounds atrocious but her fever is gone. Lily has an ear infection and an upper respiratory infection. Drew can't stop coughing and we're waiting on the results of his throat culture to make sure there's nothing terrible going on down there in those weird little lungs of his. I feel like my head might explode and could very possibly lead Santa's sleigh with the color of my nose, but haven't had a moment to get to my doctor. I'm hoping we will all be getting over this very soon, but am worried that at least one more of us will be on antibiotics before all is said and done.

We saw his CF docs yesterday and went in with a list of questions. Its not that I'm unhappy with how things have been going, because all things considered, hes doing alright. But theres so much uncertain and unknown about CF and how unique each person who has it is and I just had some questions. What are the long term effects of having him on so many antibiotics? How long do we plan to keep him on them, until he sounds better? Is he on more antibiotics than the average CF baby? Most CF kids aren't on Pulmicort - does he need to be? What's the plan for the next bronch? What are they looking for? What are they hoping to see? What if they don't see what they wanted to? How important is it that this happens? Is there any concern about developmental delays because of so much time spent doing treatment. Whats critical to get in in a day? Our daily schedule - he only really has about 3 hours of "free time" vs. Lily for example who has about 6 - she's crawling, he barely uses his legs. How sick is he? Am I naive thinking that hes doing alright? Given the malacia are we being extraordinarily careful? Is he more succeptible bc of the malacia? Will he definitely get over the malacia? With all of the new drug therapies in the pipeline, if one of those drugs addresses one of his two mutations (delta F 508) will that be enough or do both mutations need to be "fixed" for the visible signs of CF to go away? How are we doing?...just to name a few.

We got good answers to all of those questions. I could probably write a book if I tried to write out an explain all that we discussed, but it was all positive. The hard and frustrating thing is that a lot of it is just unknown. We know that the malacia and the strange structure of his lungs aren't helping him any, but its unclear whether or not they are directly hurting him. The next bronch, scheduled for February, will help to determine if things are changing. They are expecting to see the same or improvements from what they saw last time. At some point we will do a hi-contrast CT scan to see if he has any lung damage. We hope beyond hope that there is none yet, though its inevitable that it will come at some point. We're stopping antibiotics...for now. The past 6 weeks on three different kinds hasn't really changed anything much, but now that hes got this new cold hes actually worse so we'll see what the culture shows and take it from there.

The answer to my question about being naive about his condition was answered just the way that I had hoped. While he has spent time in the hospital and on antibiotics, most of what has been going on with him is not directly related to him having CF. CF complicates the whole thing, but your average joe with CF doesn't exhibit a lot of what is going on with Drew. Its malacia, and its the artery on the trachea issue, and its the abnormal anatomy of his lungs. The CF makes all of these other issues complicated, but without the CF they would still be in the picture. He's a big boy - 22lbs at 9mo old. He's breathing well. He sounds awful but hes not sick and thats a good thing. So I'm not being naive. He's doing alright. Could things be better? Of course they could. But they could also be an awful lot worse.

I'm hoping to hear back on his sputum culture today or tomorrow or Thursday at the latest and I'm hoping that its good news. I'm also hoping that my head doesn't actually explode and that my children start to feel better so that we can all get some much needed sleep. I'm hoping that everyone taking the time to read this realizes how much it means to me that you care enough to check up and I wish you all the best this Christmas and always!

Sick & Tired

I'm pretty sure that I've started more than one post this way, but Drew's sick....again. Hopefully its nothing, but it always gets me nervous. He woke up this morning and just wasn't himself. Very lethargic and cranky, both things that he is typically not. He ate his bottle and then started coughing so hard he threw it back up. He lounged around, head on my shoulder all morning, and then went down for a nap. When I heard them wake up and went to get them, Drew didn't even want to pick up his head. He had a fever of 101.4 and sounded awful. I decided it was time to call the doctor. He's getting vaccines to protect him against RSV but I was fearful that thats what was/is going on. I spoke with the pulmonary doctor on call at the hospital and based on my assessment they feel that hes just got a virus. We're just going to keep a close eye on him and if breathing becomes quick or labored we're heading downtown. Ella was sick with it on Wednesday, and i'm not feeling to hot today. But its just different when someone with chronic lung troubles gets the same "cold". We gave him some tylenol and he slept the afternoon away, and woke up feeling much better. We'll see how he is when the tylenol wears off. We hope its just a virus, but there's always the worry that the virus that causes some extra mucus will turn into a bacterial infection. Luckily (I use that term loosely) he's already on antibiotics so hopefully they will ward off the bad until this "cold" passes. I guess we shall see.

Christmas Wish

Before you watch this, scroll all the way to the bottom of the screen and pause the music player so that you can hear the audio in this video.