Sunday, December 26, 2010
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!
Thursday, December 23, 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!
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.
Tuesday, December 21, 2010
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?
Saturday, December 18, 2010
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.
Wednesday, December 15, 2010
Monday, December 13, 2010
The Early Intervention people were here this morning. Last month they had given us a few things to work on. First, trying to get the gagging to stop and get Drew more interested in eating. Funny if you consider his size. With some suggestions from an occupational therapist we were able to complete that task. The second thing we were working on was strengthen his legs a little and making him more mobile. The boy will jump up and down like crazy in a jumparoo but won't really put any weight on his legs if you hold him up. Hes not behind the curve, but Lily is nearly walking so in comparison I think I'd like to see him a little stronger. We did all kinds of kneeling exercises and different positioning and toys to try to get him to stand a little bit here and there, holding onto things of course, and in a month he improved quite a bit. Hes still not the strongest guy on the block. Physically anyway :)
So they were here again this morning and we were talking about his improvements. The Developmental Specialist asked if he spent much time doing breathing treatments or airway clearance. Um, YEAH. Its like 2-3 hours per day. She made a great point -that 2-3 hours per day that he spends sitting in one place doing his treatments is time that Lily, for example, spends rolling around, playing with toys, exploring. And that put a big question on my list for Drew's docs. How can we better balance this? This is our current schedule (roughly):
7am - Wake Drew up to do his treatments
8am - Finish treatments, eat bottle, eat breakfast
9am - Nap
11am - Wake up, bottle.
12pm - Lunch
12:30 - Treatments
1pm - Nap
3pm - Wake up, bottle
5pm - Nap
6pm - Wake up, dinner
7pm - Treatments
8pm - Bottle, bed.
If you look closely, there is really only maybe 3 hours of awake time that is "free time" for Drew these days. Compare that to Lily who has more like 5 or 6 hours of free time. I'm not suggesting that all of the time we spend on treatments is impairing his other physical abilities, but there's gotta be balance, and more of it, I think. But breathing is more important that walking. He is only 9mo old, so I'm certain I'm jumping the gun here, but the talk got it into my head and I want to make sure that I'm balancing this all okay. And not even just his schedule, but everyones. I think I try pretty hard to split my time between all of the kids. The morning nap is only for the babies, so I have some good Ella time for that two hours. Then when everyone naps in the afternoon I can get a few things done around here. I try to keep the TV off for most of the day, but turn it on when Drew is doing his treatments so that we can all watch Sesame Street together. It minimizes some of the complaining from the girls when I have to sit by Drew for the 30-40 minutes his stuff takes.
We do whatever we need to to keep Drew happy and healthy, but a big part of that is keeping the whole family happy and healthy. We'll see if we can better weigh out what needs to happen to Drew each day and when against the fun stuff that also needs to happen.
Sunday, December 12, 2010
Whats news here? Not much. The Omnicef seems to be helping with Drew's sound (I say sound because its not really a cold. No one knows what it is really other than some extra mucus presumably caused by some bacteria). Its either than the Omnicef is really finally doing the trick, or its just the 5th straight week on antibiotics finally kicking it. The reason we stuck with antibiotics is partly because the doctors are starting to think that because of the abnormalities in Drew's airways, when he does get some bacteria causing trouble it just takes a really long time to get it out. But persistence is key. I'd rather be on antibiotics for a couple of months and get rid of it than deal with it and end up with some lung damage. We switched antibiotics a couple of times too so that he doesn't start building up resistant.
I think that some people think that because he sounds the way he does that he's sick. He is in a way I suppose, but not a way that could get anyone but another CFer sick. The bacteria thats in his lungs wouldn't make it to your lungs or my lungs. Regardless of whether or not hes on antibiotics, you can't "catch" what hes got. For you or I, if we get a cold there might be some coughing, maybe a runny or stuffy nose and within a couple of days we're over it. For Drew, theres coughing, theres increased mucus. You could catch a cold from him just like you could catch a cold from Joe Schmoe, but the lung infections aren't passed on. We cough, you and I, and it rattles the bacteria filled mucus and we cough it up and clear it out of our lungs. Drew coughs and rattles the mucus, but because its so thick and sticky the bacteria sets up shop. When he coughs it up, some of that bacteria stays put. Thats the problem. You can't catch what he has.
Its still weird to me thinking of him as a "special needs" kid. We work with Early Intervention in Cincinnati. Its a free service provided by our county that pairs us with a developmental specialist to track him until age three when hes turned over to the school district. He doesn't have any "developmental disabilities", but I'll take a free service when I'm offered one. They basically just come over once a month and watch us play, ask if hes hitting different milestones, and ask what they can do to help. And occasionally they bring us a book. They're nice enough people so I don't mind them, and if something does come up at some point (for example speech delay or the need for some sort of physical therapy or occupational therapy, unrelated to the CF whatsoever) they will provide that service to us free of charge. That beats dragging the whole family to the hospital to meet with whoever we need to. CF qualifies as a disability eligible for the Early Intervention services, so we took them. But when they talk about him as a "special needs" kid it still seems weird.
I do spend some time talking about Drew and CF and our experience with it on the blog, but I think I also try to just focus on our life. So there is a special needs kid in our family. So what. I want to show people that our life is just as good theirs is. We don't dwell on the CF. We deal with it. It doesn't consume our lives, though its a big part of it. There are plenty of happy times. There are plenty of scary times. Hopefully we will have more happy than scary going forward.
This is another one of those blog posts that I started in my head days ago and can't remember what I was thinking or wanting to write. It seems anymore that until we get the kids to bed, whether it be at naptime or bedtime, and the house cleaned up and the dishwasher loaded and the clothes folded,
Thursday, December 9, 2010
All of the kids are asleep and I just went downstairs to "Santa's Workshop" - aka the bathroom in the basement - to take inventory. There's no real big gift this year, but there are lots of little ones. As if we need more toys in this house! Last year we went overboard with bigger gifts so anything that would probably be on the list for this year has already been bought. That's okay with me. We don't need anything else big. And in fact, we're donating some of our toys that we don't really play with for other kids to have something for Christmas. I asked Ella to pick through all of her guys - aka stuffed animals - and see if she could find a few to share with other little boys and girls. She pulled a few out. When everyone goes to bed one of these nights, I'll do a little more sorting.
We have a lot to be thankful for this year. We welcomed two new babies into our family (can't believe they are already NINE MONTHS OLD!), went through 4 successful surgeries, got to spend lots of time with grandparents, enjoyed many laughs with and at the expense of Ella, and the list goes on. Its still funny to me how little people really understand about all that we've been through and will continue to go through with Drew. At the beginning, it would frustrate me when people didn't understand, but now I don't care. For many months, CF was all consuming of our lives. Now, its just a part of our lives. Its a big part and we will continue to grow and learn more about the disease and life with it, but it doesn't define who we are.
I read a blog today that made me want to do more. Its a different cause, not Cystic Fibrosis, but another cause that could use your support this holiday season. Click on the picture below of baby Cliff to learn more about it.
Wednesday, December 8, 2010
Tuesday, December 7, 2010
We're still on antibiotics. We just switched though to something different since the one we were on for the past two weeks didn't seem to do anything. I think I mentioned it before, but they are starting to feel like a longer course of antibiotics would be more effective for Drew because the malacia really seems to make this cold-like sound linger for quite some time. He was on something back at the end of October for 2 weeks. We finished that and about 4 days later got put on something new. He had started to sound better, than without the ab for 4 days seemed to get worse. So we got back on another antibiotic, the one we just ended yesterday, but this time nothing seems to be changing. Rather than taking a break, we're going to continue with a new antibiotic called omni something or another that apparently covers a wider range of bacteria. When they culture him he shows very few staph, but for whatever reason we can't seem to clear him up. And the great debate continues - whether this is just malacia sounds or whether its malacia combined with an infection. I guess we'll see how the next two weeks go.
I've told a lot of people who don't see him often and ask how hes doing that if you were to just look at him you wouldn't know a thing was wrong. Now, if you hear him, you're pretty sure he's about to croak. He's doing great. I asked the CF nurse the other day on the phone if I was being naive to think that hes actually really doing pretty good, and she said not at all. She said that most of whats been going on is all complicated by the CF but its not typical CF presentation. Hes gaining great weight and we're monitoring his lung health so closely that if he were to catch anything bad we would know right away. The name of the game with CF is prevention prevention prevention. And we're on it.
Life has been pretty boring otherwise. We're finally into our groove with the vest. We actually got a wrap that looks like a giant blood pressure cuff instead of the vest because the vest was a little to big (and I admitted that we probably jumped the gun a little trying to get into a vest so young). But its working great and we're happy with the saved time. Hopefully we have an uneventful next few weeks in terms of the CF. We're ready for a doctor-free Christmas and New Year!
Friday, December 3, 2010
I know you've all been waiting for the compelling conclusion to the insurance prescription fiasco. I got the medications in the mail. All were a 30 day supply. That's right, every last one of them. Even the one that I specifically confirmed twice, before I hung up the phone, would be a 90 day supply. Even that one. I made how many phone calls between insurance and this specialty pharmacy to get these approved?
I called the pharmacy right away and expressed my frustration to the woman on the phone. She tried for a few moments to see what happened before transferring me to the rep who filled the order. When he got on the phone he told me that BCMH only allows a 30 day supply. So all of my calls to Anthem were for naught. Where is that lapse in communication? When I asked why I was only getting a 30 day supply, could they not tell me that BCMH would only allow 30 days? I spent probably a total of 2 hours on the phone between them and Anthem and all along it had nothing to do with either.
On a lighter note, I have a quick Ella story I need to share. She was in the playroom yesterday and I had brought the twins downstairs and stuck them in there with her and walked into the kitchen to make bottles. Two minutes later, both simultaneously started screaming. I went back into the playroom where Ella stood looking at me sheepishly. I said, "What happened?" and she looks up and me and says, "They missed you!".
Wednesday, December 1, 2010
"But the other amazement in all of this is the instinctive initiation of the Fight receptors in the sudden surge of Fight-or-Flight that ensues when your baby gets sick or your kid falls off the top bunk or your toddler slips into the deep end with a quiet splash, or maybe you just received news that your brand new baby has a genetic condition that makes her different. You fight, without even knowing it. You rise to the occasion. You jump in, save them, wipe tears, call doctors, hold compresses, pull yourself together and you fight like hell. As "minor" in the world of parenthood snafus as our trip to the ER was, I couldn't help but recognize the fight that commences and the calmness that deploys. You just know what to do. You tell the What-if voices to shut the hell up, and you advocate for your child-- attentively, fiercely, fully." - Kelle Hampton, Enjoying the Small Things
I spent another many hours on the phone with insurance yesterday. I swear that Anthem hires only incompetent people.
We got secondary insurance coverage from the state of Ohio under the Bureau for Children with Medical Handicaps. Our insurance is really phenomenal, and we met out deductibles and out of pocket max, oh, back in like April, but we still have co-pays for doctor visits and prescriptions. And we go to the doctor A LOT and use a LOT of prescriptions (by "we" I mean Drew). So the BCMH picks up all of those extras that are related to CF. So if we go to the pediatrician, we still have our co-pay, but when we go to see the CF doctors then there's no co-pay. I'm getting to my point.
BCMH will also cover our co-pays on all of Drew's medications, but only if we use the CF Services Pharmacy, an online pharmacy servicing only CF patients. But our insurance requires that we use their online pharmacy. So I had to call them to ask for an exception, allowing us to have our prescriptions filled through the CF Pharmacy. They pretty easily agreed. I called the CF Pharmacy and told them that an exception had been put into the system and I needed to place my order (which was going to cost me nothing!) and they said that a 30 day supply would be on they way. URGH!! I need a 90 day. The problem was that Anthem only approved an override for 30 days. So I call them back to try to get a 90 day and after being on hold for 21 minutes, the woman tells me they are having some trouble getting that approved and they'll have to call me back. Two hours later she calls back to say its been approved and the problem was that they were looking under my name and not Drew's, despite the fact that I gave them his birthday. Surely she didn't think I was born on 3/14 of this year. Whatever, we got it sorted out. So I call back to the CF Pharmacy because no one can do anything without you holding their hand, and we're all square. The woman asks me if its just the one prescription I need and I was like no I need these 3 that I spoke with someone about yesterday. Well, the order had never been placed. I asked what the confirmation number I had was for. Apparently the guy just made it up or something because they had no record of it. I tried to remain calm and just get everything ordered and before we hung up I said "Just to confirm, these are all for 90 day". She goes, "No ma'am, these are just 30 day, Anthem has not approved a 90 day supply." Really? REALLY?! Oh for the love. Fine, just send me 30 and I'll deal with you again in a month when I've gotten my patience back.
All of this time spent on the phone stressed me out. And Lily isn't happy about it either.