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
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...