Where do I even start

Well, we got another cold...or something like a cold. On about Tuesday of last week Drew started with this new cough. He had no runny nose, no other signs on being sick, just this strange new cough. I called his doctor who said that she would see him on Thursday. On Thursday morning, I called again and said that I didn't really think he was sick so I wasn't sure what she was going to be able to do for him, he just had this terrible cough and seemed to be working a little harder to breathe. They said that they were fine with waiting until Tuesday (today) to see him as we already had an appointment scheduled for a checkup. They gave us a new nebulizer med called Atrovent to try to open his airways a little to help with coughing up whatever he had going on.

Well, as it always goes, the next day he was worse. He was almost completely voiceless (as in hoarse, lost his voice) and coughing up a storm both while awake and while sleeping. I called again and they said to try the Atrovent for a few days as it should really help. Saturday came and he was worse yet; struggling to breathe and coughing nonstop. It was so sad to hear his little cry without a voice - screaming at the top of his lungs but not a sound coming out. He was coughing so hard on Saturday that he threw up a couple of his bottles. By about 8pm he was working so hard to breathe that I called the Pulmonologist on call and we decided he needed to go to the ER.

The rushed him right back and put him on oxygen. He oxygen was low but not alarmingly low. They did a chest and abdomen x-ray which showed nothing. They concluded that this was just a virus (read: cold) that was being made to sound worse than it is because of all the abnormalities with his large airways (trachea). They decided to give him some steroids to try to relax and open the airways which might help to calm the cough and ease the breathing, and they sent us home.

They did ask 100 times if I was comfortable with the decision to discharge him, and I was, I guess. The reason I was okay with it is because there isn't a whole lot they could do for him in the hospital other than observe him. A virus can't be killed with antibiotics. They can't give him any breathing treatments in the hospital different than I'm giving him at home. They just don't know what to do for this poor kid who was practically turning blue gasping for air on Saturday night. Imagine breathing through a coffee straw...all the time. That's Drew. Now imagine it being bent or compressed in some fashion. Yes, you can see where this is going.

He seemed a little better on Sunday, at least the breathing part. The cough is still atrocious but at least he was able to breathe. Hes not sleeping well because hes coughing so much. He actually slept with us last night because I was worried about him. He had a CF appointment this morning and they told us to come prepared to have him admitted. UGH!!! The doctors all took a listen and his lungs do not sound clogged. This has been the same since day 1, which is what led them to the whole airway issue. You see, we see the CF doctor because, obviously, he has CF, but thus far the CF has not been the problem. It certainly complicates the problem, but its not the problem. His trachea abnormalities are the problem. The compression of his aorta on his trachea is a problem. The cartilage rings around his trachea that are misshaped are a problem. This is whats causing all of the coughing and breathing trouble, not the CF. The CF just causing the mucus and secretions to be abnormally thick making them extra hard to clear. When you or I have a cold, we cough and the phlegm comes up and we spit it out or do whatever you do with gross phlegm. Drew can't get it up. Its just to thick (from the CF), and his small, compressed airways aren't allowing wide enough openings for it to come up. Trapped mucus in his lungs = breeding ground for bacteria = really bad news in the CF world. The silver lining is that there isn't (or hasn't been) much mucus, or bad mucus anyway. With all thats going on, he really hasn't been terribly affected by the CF, at least not yet anyway.

So we talked with the doctor. We talked and talked and talked. The best doctors from around the world have seen Drew's bronchoscopy and seen his abnormal airways and no one really knows what to do. They are reasonably confident that this current cough is just another trachea related issue and not a horrible CF infection. The first abnormality, the aorta compressing the trachea, can be fixed. There is a surgery that isn't uncommon that can repair that, lifting the artery off of the trachea thus allowing it to be open to its full, round, normal size. If that were the only issue he had going on, it would be a no-brainer to go in there and fix that. But its not the only issue. When he takes a deep breath in, instead of everything expanding, parts expand while other contract, causing the airways to not be nearly as open as they need to be. No one has ever seen this before. No one has seen super small airways like his and frankly no one can believe that he breathes and acts like he does, given whats going on inside. And they don't know how to fix it. Conversations have gone something like this: "Well we could try this and see if that helps" or "We could maybe try something like this", all conversations that I'm glad are being had, but at the same time wish they were going differently. I wish there was an answer, an easy way to fix this, even if it were a surgical answer.

They think that fixing the aorta compression issue will help with his coughing and breathing, but they just aren't sure if thats the main problem. It won't hurt at all to do that surgery, they just don't know if it will help the way that we need it to help. They think that this new, terrible cough that he has is his bodys way of telling us that something needs to happen. I think the way we're (docs and us) are leaning is to do the surgery to move the aorta, and while they have him open, really observe whats going on with the lower airways and decide what, if any, intervention is necessary. This unfortunately may mean more than 1 more surgery for the little man. The ideas of putting a stent in his airways to open it up was one thing that was thrown out. A trache tube was another, with a sort of custom tube long enough to reach down into his lower airways and hold them open until they get strong enough to open appropriately on their own. I don't want him to have a trache.

They aren't terribly settled or completely comfortable with moving forward with any of these options just yet. They want to keep talking and truly figure out what is the best thing for Drew. That said, they are nervous about the upcoming cold and flu season and how it will affect him. Hes getting (I hope, as long as insurance isn't a huge pain in my a$$) a special monthly vaccine shot that will protect him from RSV which would be devastating for him to get, but that will only protect against RSV. We still have colds and flu's to worry about. He'll get a flu shot for sure, and there will be incessant hand washing and sanitizing going on here. But kids get sick. Its just so so bad if he does. I hope its not always the case. I hope we get this figured out and can go on leading our lives, dealing with CF (until new meds are available or a cure is found). But right now things just aren't good.

Please please please use your best judgement when coming to my house and if you have or have been around someone with a cold, please don't come. Please wash your hand when you come in, regardless of whether or not you'll be toughing the babies, and please don't touch Drew without first using sanitizer. Ella is starting preschool in a week and will inevitably bring home germs. I do understand that. I will do everything in my power to keep her healthy, but it do know that she will get sick. Just becasue my kid might bring germs into my house doesn't mean I can afford to have your kid bring them in as well. But please don't be scared of me either. I want friends (I need friends) and so does Ella. Please don't take offense to this. I'm just doing what I need to do to protect my family. I'm trying so hard to find balance. I'm just doing my best.

The doctor today prescribed some inhaled steroids that he will take once or twice a day until we get this airway issue resolved. Steroids have worked the past few times we had to give them to him. Here's hoping it makes things better this time until we get a better plan in place.

A Few CF Fundraisers

The end of Cincinnati's Finest Young Professionals Fundraiser is near and the candidates could still use your support. The Finest Finale is on September 10 at the Redmoor in Mt. Lookout Square in Cincinnati. Tickets are on sale for $65 - includes 2 drink tickets, valet parking, by-the-bite foods, live music from Stays in Vegas, silent auction, raffle & more. Price goes up to $75 if you purchase at the door- if there area any tickets remaining!

There is a wine and beer tasting event called Let it Breathe on Thursday, September 16th at 6:30pm(I'm going!). The Cystic Fibrosis Foundation Let It Breathe event gathers over 250 wine and beer lovers of all experience levels! This casual, fun atmosphere offers guests an opportunity to SIP and SAVOR superb wines and local microbrews alongside delicious food pairings prepared by the Greater Cincinnati Independents (GCI) local chefs and restaurants. Bid on a variety of silent auction items and mingle with friends and fellow foodies in a lively social networking atmosphere.

Finally, these bracelets will only be available for a limited time. They were created as a part of the Finest Young Professionals fundraiser and are not yet available through the Cystic Fibrosis Foundation. Please help to support the CFF and purchase your bracelet today!

8:57

That's what time I went to bed last night. Kids went to bed. I got a shower. Then I went to sleep.

This was my first week without a mom in town to help me and I think it went exceptionally well! All kids are still alive and the house is still standing. I consider that a success. It was a lot of work and I was exhausted by Friday (hence the 8:57 bedtime) but I think we're gonna be just fine. Now, my house probably won't win "cleanest house on the block" anytime soon, but I'm okay with that.

Drew's got something new going on. I don't know what it is, but naturally, it worries me. He got this new, deep cough on like Tuesday or Wednesday. I called the doc and they decided to try him on a new medicine called Atrovent to see if it would help to open his airways and help him clear whatever is causing this new cough. So we tried it for a few days and now he has completely lost his voice. Its so sad to hear when he cries, this very faint little squeak coming from him. I called the Pulmonary doctor on call at the hospital to talk to him about it. He said that it sounds like hes got some swelling thats causing the hoarseness, probably from all the coughing. He doesn't think that the Atrovent would cause hoarseness but he said if it wasn't helping that we should discontinue. We gave him some Motrin to try to help with the inflammation/swelling and are supposed to call back tomorrow and give an update. He just seems to be breathing a little heavy and struggling to catch his breath. Its hard to watch a baby in distress. But his demeanor remains calm and happy. So we shall see.

Ella is scheduled to get her cast off on Friday! They will take it off and xray to see if its healed (please dear God let it be healed!). If shes better then we are done. If not, we get a new cast for 4 more weeks. Unfortunately she can't start preschool until she can walk so I'm really really hoping that shes better.

Drew and Lily are 5.5mo and are starting to sit. I love this age because they do really cute, fun things but they still can't move. Baby food starts soon. I'm going to make it myself this time for 2 reasons. The first is that Drew will need higher calorie than they sell in the store, so rather than buying that and modifying it I can just beef up the calorie content of the stuff I make. And second is that it will be cheaper. One healthy baby alone costs a lot of money. Two is just unbelievable; the number of diapers, the canisters of formula, the extra everything (high chair, carseat, etc, etc, etc) and pile on top of that copays and medications. Sheesh!

Hopefully this new cough turns out to be nothing but I'm not optimistic. I just wish we could catch a break (not literally!) and have a healthy baby boy.

Still No Computer

Its been about 2 weeks now since our computer bit it and I'm about to lose my mind! I am a total computer junkie and surfing from my phone only does so much. Its also near impossible (though there have been a few posts written on the Droid ) to blog with my mini touchscreen keyboard. Typos abound and options are limited. I don't have anything terribly worthwhile to blog about, but with the option gone its all I want to do. Hopefully we will be getting it back either today or tomorrow, so until then...

A few random ramblings

There's a website that a friend of mine has used for a while now that I just recently started to utilize and its called ebates and if you shop online then its totally for you.

Ebates is a website that rewards you with cash-back for shopping through their website. Its kind of like credit card points, only its cash. There is really no catch (honest!). There are over 1200 reputable retailers (Gap, Babies-R-Us, Diapers.com, Home Depot, some airlines, etc etc etc). If you shop online, you simply go to ebates.com and search for the retailer you are looking for. For example, the other day I wanted to buy diapers. I went to ebates.com and I looked for Diapers.com on ebates site and once I found it its listed that they offer up to 5% cash back for shopping through their site. So from the ebates site I clicked on the link for Diapers.com and it took me to diapers.com where I made my purchase. A percentage of my purchase is then credited back to my ebates account automatically. Every 4 months I get a check in the mail for the total of my rewards. It is that simple.

If you buy wedding or shower gifts online, you can do it through ebates. If you buy airline tickets, you can do it through ebates. If you buy diapers, you can do it through ebates. Pretty much all major retailers are listed on ebates and you get cash back for shopping them. And the best part is there is absolutely no work from you necessary. If you shop online, you simply start at ebates.com and the rest is automatic. They don't take your credit card info. They don't charge you anything. They are simply a vehicle for shopping your favorite stores and they pay you for using them. Its real, its legit, and I just wanted to share.

To sign up or just check it out, follow this link- http://www.ebates.com/rf.do?referrerid=mKvKuCJB%2BtTPnv49oCTpTQ%3D%3D - its my referral link. If you sign up and you actually use ebates 1 time to make a purchase, you get $5 put into your account and I get $5 put into mine. Once a quarter you will get a check (like a for real legit check) in the mail. Just saying, if you shop online it really seems silly not to use this site.

Next, I miss my mom.

Next, I seriously cannot believe how fast these kids are growing up. Last night was our first night sans Miracle Blanket (if you don't know about it, you should) and it went surprisingly well. Laid back Drew just stretched out on his back and fell fast asleep. Lily fussed a little bit here and there, mostly when trying to fall asleep, but they slept all night so I consider it a success. Both kids eat rice cereal now - Lily better than Drew. The both roll and are working on sitting. The both talk and talk and talk. They are seriously both absolutely adorable (i'll post some new pix soon - our computer died so I'm using a makeshift).

Ella doesn't look like a baby anymore. Shes getting so tall and is so funny to listen to. She tells us the funniest things. For example, yesterday we went to visit Martin at work for lunch. On the way home, in an attempt to keep her awake, we were talking away. She asked if we could go back and visit daddy sometime. I told her that sometime we could but that daddy is busy at work and I asked her what she thinks he does all day. She thought about it for a minute and then said "Probably draws rainbows all day". I said probably.

Next, I hope this fall I can do some of the things that I've been missing...such as having friends over for dinner or drinks, making it to Gourmet Club, getting back to the east coast for my cousin's wedding and to visit our families and friends back east. I really hope we can do some of this.

Finally, I miss my mom.

That's all that's on my mind right now. More later.

I just haven't met you yet

I'm not a huge John Mayer fan. There's some music I like and some I don't. I was driving home from someplace the other day and everyone was asleep in the car and one of his songs came on the radio - "Half of my hearts got a grip on the situation...". Its really pretty much exactly how I feel. Sometimes I feel like I'm under control, like I'm understanding and accepting and going to be okay with all of this. Then other times I feel like I'm about to spiral out of control. The "why me" and "its not fair" and "I don't understand"'s start flying through my head. I really feel like half of my hearts got a grip on the situation.

This past week I did a lot of waiting. I wasn't sure when or if the doctors were going to call with the plan but I waited and waited. I didn't necessarily sit around, but when I was home I ran to the phone everytime it rang. When I wasn't home I was hoping they wouldn't call because its a nightmare to try to return a call from a doctor. On Thursday the phone rang and it was Dr. Chini (Drew's CF doc). She wanted to let us know they were still talking about Drew but that's as far as they were. Talking about him? Tell me more! Tell me what you're talking about!!! She said that they just didn't know what to do. See, there are a few issues, one of which has never been observed before...ever. Its not good to be the different one. Especially when you've got CF.

The discussion with Dr. Chini continued and she said that there are a number of doctors getting involved. Since they haven't ever seen anything like this before, they are having a tough time deciding what to do and want as many thoughts, ideas, opinions as they can possibly get (fine by me!). The facts are as follows:

• Drew has stridor (a sound babies make when there is floppiness or an obstruction in his airways, but no actual difficulty breathing (although it sure sounds like it).
  
• Drew has CF
• A critical element of CF airway clearance, which is inhibited by his floppy airways

Dr. Chini said that there are few lines of thinking going on. First and foremost from a CF perspective, we need to get those airways working just the way we're supposed to so that his health is maintained. Other pulmonary doctors think that perhaps, as is the case with other kids who have this one problem with the innominate artery compressing the trachea, as they grow and the cartilidge in their trachea gets stronger, it will sort of move the artery on its own, thus solving the problem. The concern with waiting to see is what, if any, lung damage will occur because of the CF and the inability to clear his airways the way he needs to. Third, some ENT docs and a cardiothoracic surgeon wonder if doing the surgery to move that artery will even solve the problem, since the artery isn't the only problem (remember the prior post on his lower trachea moving in unison?) They wonder if that issue, which is the one they've never seen before (like ever) is the cause of or the affect of the innominate artery issue...or if they two are completely independent of one another.

So they're talking. I'm glad they're talking, trying to figure it all out. Its definitely a little scary that they just don't know what to do, but I'm glad they're not just sitting around. The video and pictures of his bronchoscopy as all over the hospital and are "different" (I believe thats the word thats been most used) than anything they've ever seen. Dr. Wood, a world renowned Pulmonologist whose performed more bronchoscopys than any other doctor in the world, has never seen anything like this. Whether its a bad thing for Drew has yet to be determined. As of this far, he hasn't been affected - no breathing issues, no bacteria in his lungs, no trouble. But they just don't know.

I talked to Dr. Chini for over half an hour. I asked her a billion questions - could this get worse? what does waiting mean? A few answers were comforting. She said that she doesn't know if this could get worse. The innominant artery part of the problem (again, read prior post for the scoop on that) doesn't usually get worse as kids get bigger, it tends to heal itself in about 75% of the cases. The other 25% have it fixed surgically and the problem is solved. The real puzzle and therefore concern is the funny motion of the lower trachea (parts contract while others expand all at the same time - not normal, never been seen before). And shes not sure if they can expect that to get better, get worse, or stay the same and not affect Drew. Waiting, meaning no surgery right now, simply means more trips to see Dr. Chini for regular, probably monthly, tests and cultures to make sure that the sound is still just a sound and not nasty bacteria festering in his lungs. It means more bronchoscopys to look down his throat and see if anything has changed.

I'm okay with the waiting option...I guess. I mean I wouldn't want to see him have to go through another surgery if this is something that he could potentially grow out of. At the same time, if waiting means life with "floppy" airways and ineffective airways clearance and potentially irreversible lung damage, then I don't want to wait. But what if we do the surgery and it doesn't fix anything? And what if we wait and he gets worse? Half of my hearts got a grip on the situation.

Dr. Chini said that shes sorry they didn't have a better answer for me or a plan in place yet, but to know that all of the moving parts were working together and I would be the first to know of any discussions or decisions or what have you. So Friday morning around 7:45 the phone rings and its a nurse calling to let us know that they have scheduled Drew for another bronchoscopy at the end of October, like the 25th I think. I guess they were able to talk and decided that in the short term, waiting and re-scoping him would be the best option! To take a look about 3 months after the last scope and see if anything had changed. I guess we will see if things have improved or remained somewhat the same, and hopefully haven't gotten any worse, and take it from there. My hope is that they have improved, even if just marginally, and we can continue to wait another three months, and then another 3 months. As much as I hate the tests they have to do to him, if we can spare him a major surgery then I'm all for it.

This may all sound like such a jumbled, disorganized mess. You might wonder why we can't get an easy answer to this, that or the other thing. And I wonder the same thing. But I'm not frustrated with the doctors or the hospital. I'm confident that they are working on it, that they are doing their best, that they are doing everything they can. They aren't just doctors, they really do care. Maybe with other problems or issues they are just doctors writing out a prescription or putting on a cast and handing out an order to come see them again in a few weeks. But with CF I have found that they have such a deep concern for and dedication to the search for the cure. There just aren't that many of people with CF. The clinic in Cincinnati only has 200 patients. There are only about 30,000 in the US. They are doing everything they can to ensure his quality of life, both now and in 50 years. They do care about him and they want to make the right decision as much as I want them to make the right decision. It just means having some patience, a virtue that I was never blessed with, but I'm working on it.

What I'm frustrated with is CF. I'm frustrated with people asking well why not this, or asking if i've thought about that or the other thing. I shouldn't be. I know people just want to know. And I would probably be frustrated too if no one ever asked. I so appreciate the notes I've gotten from people letting me know how much they appreciate my blog, or "stalk" my blog or admire me for what I've been dealing with. I do really appreciate it. Its good to know that someone is reading this all, that someone wants to know how I'm feeling or whats been going on. But forgive me if I don't respond. I do find it easier to post my feelings on here out in the open than to talk about them verbally.

I'm optimistic. I woke up this morning, like most mornings, and was happy to see my 3 smiling kids. I know a cure will be found. Its right around the corner, we're just waiting. And while we wait we continue to do what we have to do. I enjoy the 30 minute sessions several times a day that we get to hold Drew to do his treatments. Hes so mellow and its nice to just sit with him and hold him. I do it for him.

I'm so pessimistic. I worry everyday that hes going to get sick and that I won't have him forever. I wonder how I would possibly go on without him, or without any of my kids. They are my world. I get mad that all of these other issues keep arising. I get mad at insurance and I hate the fight. But I would gladly take the fight over not having him.

I feel like I just haven't met him yet. I feel like poor Drew is just waiting to emerge and all of these stupid problems keep popping up and I just haven't met him yet. No one has met him yet! He hasn't been out much, except to the hospital one to many times where he melts the hearts of all the young nurses every time they seem him. I wonder when we will meet him. I hope soon. I hope he will be "normal" just like your kids. There's another song, this one by Michael Buble, called "I just haven't met you yet" (can you tell I'm listening to Pandora this morning?). It probably wasn't written to be understood the way I listen to it, but I like it and it goes like this:

I'm not surprised, not everything lasts. I've broken my heart so many times I've stopped keeping track. Talk myself in, I talk myself out. I get all worked up and I let myself down. I tried so very hard not to lose it. I came up with a million excuses. I thought I'd thought of every possibility. And I know someday it will all turn out. You'll make me work so we can work to work it out. And I promise you kid that I give so much more than I get. I just haven't met you yet.
I might have to wait. I'll never give up. I guess its half timing and the other half's luck. Wherever you are, whenever its right, you'll come out of nowhere and into my life. And I know that we can be so amazing. And baby you're love is gonna change me. And now I can see every possibility and somehow I know it will all work out. You'll make me work so we can work to work it out. And I promise you kid that I give so much more than I get. I just haven't met you yet...