Tuesday, August 31, 2010
Saturday, August 28, 2010
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.
Wednesday, August 25, 2010
Saturday, August 21, 2010
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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?
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.
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...
Tuesday, August 17, 2010
- Your butt could fall off (not sure why I found that so funny but I laughed out loud)
- You could permanently itch
- You could have no friends, no bladder control and no sense of humor
My mom is leaving on Friday. I (and Martin sincerely agrees) would move her in permanently if I could. Ella adores her and she has been so wonderful to have around all summer. Ella breaking her leg kept her around for an extra week, but shes got to go back to school next Wednesday so we've kept her as long as we could. I wish we lived closer. I wish we lived closer to both families. Their help and support has been invaluable over the past 5 months. I've written about this before as its such a struggle between being so close to such world-class care for Drew and being so far away from family. I'm hoping that we can get this nonsense with Drew under control enough that we can move at some point. The reality is that we will go and do whatever we have to do, wherever we have to, for as long as we have to, to keep our kids as healthy and happy as possible.
I asked Ella what she wanted to do with Gaga before she left and she said make cookies, go to the zoo, get ice cream, play with guys, play play-doh (and pretty much everything else that we've done all summer long). She has no idea what it means that Gaga is leaving. I'm pretty sure she thinks she lives here. When Martin's mom was here, she thought she lived upstairs and just came down to do dishes. Its funny how kids perceive things. She's going to miss her though, that I know. I am too.
I'm off to do a few things with my freedom and free, trustworthy babysitter for these last few days before she leaves (doctor appointments, haircuts, quick trips and errands). After Friday and until this cast comes off of Ella's leg, the 4 of us will be stuck in the house until daddy gets home from work. I had bought a Joovy stroller for 3 a couple of weeks ago but hated it so much (it weighed 1000lbs and was impossible to maneuver) so I sold it...the day before Ella broke her leg. So I have no practical way to transport all 3, so until Sept.3 (day the cast comes off and hopefully stays off), you can come visit me, but you probably won't catch me out and about (not that I've been out and about for the past several months!).
Things could be worse, just remember things could be worse :)
Friday, August 13, 2010
Your trachea is more or less round. Its a long tube leading from your throat all the way down into your lungs. Below is the shape of a normal trachea. If you pictures it upright, the rounded part (blue) faces out toward your chest behind your sternum and the flat part (brown) faces your back.
The picture below is an actual image taken during a bronchoscopy of a compressed trachea. So if you use the image above to visualize, the picture below is the same orientation. The arrows point to the back of the trachea (the brown part in the picture above, the part that faces your back). The black opening is the airway, and you can see its not round, its sort of squished. The shadow around the bottom of the picture is the area being compressed by something and making the airway the shape that it is rather than being open and round. Remember, in this picture you're looking down into the airway, so you're standing in front of someone looking straight down their throat. The bottom part of the picture is the front of the airway near the chest. That black hole should be round, not oval. If you can picture the shadowed area below the black hole being black as well, that would represent a normal trachea without the compression.
Drew's is even more closed. Frankly, they said they aren't sure how he's breathing the way he is given the condition of his trachea.So the final picture I found is of the whole anatomy of the chest. It shows how the arteries and trachea wave around one another. The esophagus is closer to your back and the trachea is closer to your front. The right common carotid artery wraps around the front of the trachea, and in Drew's case its a little too close and therefore pressing down on the trachea causing the compression. What the surgery he needs entails is lifting that artery off of the trachea and attaching it to the sternum with a stitch to hold it off of the trachea.
The other issues he has of the whole trachea not moving in unison when he inhales or exhales is a whole new can of worms. They aren't sure whats causing that and if it poses a serious problem. The plan is to take care of the compressed trachea and when hes open to take a closer look at the weird rhythm of the trachea and the "weird lungs". Hopefully they are not an issue, and this surgery will fix his sound and allow him to clear his airways more effectively.
Ask me questions if you have them. If I don't know the answer I will probably want to learn it so I'll find out. Hope this helps to clear things up some!
Thursday, August 12, 2010
Drew got a cold about 2mo ago. When his cough and froggy voice persisted, he was put on oral antibiotics as the thinking was that he managed to grow some bacteria that needed to be eradicated. Several days later and no better, we were admitted to the hospital for IV antibiotics. Still sounding the same after another week, it was concluded that something other than bacteria was causing this sound. That was good from a CF perspective, but raised some other concerns as to what the problem is.
On Tuesday, we were back at Childrens for a Bronchoscopy and Laryngoscopy (english: they stick tiny cameras down his throat and into his lungs to take some pictures). The were thinking they would discover that he simply had floppy airways (malacia) but found something very different. First, toward the top of his trachea or airway, they noticed that something seemed to be compressing it. Its supposed to be a big round opening and Drews is squished near flat in one area. Once you pass that spot it opens back to to normal size. However, the behavior of the trachea was un like anything they had ever seen. Normally when we breathe in our airways expand and when we breathe out our aIrways contract, in unison. Portions of Drews trachea open up when he breathes in but other portions compress.
They decided to admit us based on their findings and try to further investigatge to bigger issue of what is compressing his trachea. They did a CT scan and found that the aortic artery crosses his trachea a little low and is compressing. Its not an uncommon thing, but it does require surgery to fix. A chest surgeon will open him up, lift the artery off of his airway, and attach it with a stitch to his sternum. Whiles he's open, a pulmonologist and an ENT will be present to watch him breathe and see if they can determine the cause of or the solution for the second issue. (I know its hard to understand which is why I will do another post with pictures and all).
So what does this all mean for Drew? It means he's got shitty shitty luck. This in no way has anything to do with the CF but because of the CF its a big problem. These problems are prohibiting him from effectively clearing his airways, a critical element of staying healthy for CFers. The aortic valve problem isn't totally uncommon, and many times its not an issue that needs surgical intervention. However, hecause of the CF it needs to be fixed.
I requested that the doctors and surgeons and everyone from every specialty involved get together and talk about this so we are sure this is the best option. They are also going to help facilitate a second opinion. We should hear from them next week or so with the game plan, but its looking like somethig they would like to see happen in the next couple weeks.
It sucks, I'm sad and worried, but we need to do what's best.
More to come.
Wednesday, August 11, 2010
Tuesday, August 10, 2010
Which brings me to how today went. Not as planned. They knocked him out and looked down his throat to see his trachea and his bronchi (lower airways/tiny lungs) and its not really malacia. They said that it looks like maybe there is an artery compressing his trachea which would likely need to be surgically addressed. They're doing the CT scan to see if they can determine what's causing the compression since its not malacia like they had suspected. Then they looked into the lungs and the doctor said they looked different, like "nothing he had ever seen before". He said that he's been doing this for 30 yrs and had never seen lungs that looked like Drew's look. It wasn't terribly concerning in the near term, as his oxygen levels don't seem to be affected by this. However this doctor didn't know how it would affect his ability to clear his airways, a critical element of stayig health with cystic fibrosis. Keeping the airways clear of mucus and thus bacteria is the best thing for CF. With him being so small and so far unaffected by any bacteria, its hard to say whether or not his abnormal lungs could be causing any harm. There wasn't really any conclusion on that conversation. Just that he was going to have to talk it over with some colleagues and figure out what they wanted to do.
I've got a couple of thoughts or feelings on all of this. First, this sucks. I wanted normal, common malacia. I don't want it to be an artery pressing on his airways, or anything pressing on his airways that would need surgical intervention. Hasn't the poor kid been through enough? I'm scared of what they're going to find or what they might have to do. Absolutely none of this has gone according to plan. I'm scared that the doctor hasn't ever seen lungs like his before. What does that mean? For now? For his future? Why is this all happening?????
I'm selfishly thinking about how I'm going to do this by myself. Martin has to work. Our families have things of their own going on. They can't stay with us forever. I know they will be here as much as they can, they already have! I need to learn how to have 3 kids. But what if he has to go back into the hospital? I guess we will all just sit in here with him. We can pack a bag of toys and movies and all hang out here for some time. By that's not fair to Lily or Ella. But its not fair to Drew to not have me here. I can't move back to Philadelphia when Cincinnati Childrens Hospital has the number 1 CF Center in the country and perhaps the #1 pediatric respiratory team in the world (second to London).
I guess we will see what the CT scan shows and take it from there. We will get a second opinion and maybe even a third. It will be a pain in my ass, having to either find someone to watch the kids or packing them all up and bringing them along , but its his life and we owe him everything we've got. I wish I could put all of his doctors (CF and all other pulmonary docs) into a room together and listen to them debate it and then make a decision. I understand that there are different opinions and potentially different options but I just want to understand and see different perspectives and make our decision.
This is so not how I thought things would go. No humor here today, just a worried mom with a heavy heart.
Monday, August 9, 2010
Another thing that Heather shared with me was 15 Tips that her mother, a mother of 4, 2 of which had CF, put together to share with other families dealing with a disability or an illness. I read it and I felt justified in my feelings. I don't like them all, but I feel them all. I don't like that our lives are so different than they were just 4 short months ago, but I wouldn't trade it. Its just taking some getting use to. If it weren't hard enough dealing with this all - the emotions, the stress, the exhaustion, the doctors, etc, etc, etc, - its hard to see how our friends and relatives take it and I wonder and worry what they think and how this all affects them and us and our relationships. Its hard.
Here are the 15 tips:
These tips are based on the experience of Doug and Donna Summerhayes, founders of the Canadian Cystic Fibrosis Foundation and parents of four children, two with Cystic Fibrosis. Their daughter Pam died from CF at age 26. They are still involved in caring for their son Jeff, who at 48 is one of the oldest Cystics in North America. Their well son Gregg is a police officer and married father of four. Their daughter Heather is the author of “Sixtyfive Roses: A Sister’s Memoir,” which tells the story of how this family fought for their children’s lives.
· Share "important" information and understanding regarding care programs with your little family and your extended family and close friends.
· Do not try to satisfy the extended families "standards" or expectations. You must do what is right for your family and not what extended family or friends expect. Remember that you will never "be the same as everyone else," so don't try.
· Remember that you are husband and wife first. How the marriage is nurtured will preserve your union and reflect on the care for both the disabled child and your well children.
· Consciously develop your sense of humour.
· Make sure to get adequate exercise and rest so that you don't develop your own health problems. Try not to over schedule yourself. Organize some care relief if possible, even if it’s just an hour or so a couple of days a week, so you can nap or take a walk.
· Remember that you may not be able to do everything alone. Swallow your pride and ask for help. Make your specific needs known. Graciously accept the help others are willing or able to provide, remembering that everyone has their limitations. When help arrives, don’t spend all your time and energy hovering or directing them – go do what you need to do!
· Encourage your disabled child to do as much as he/she is able, just as you would your well children. Dwell in possibility. Include them in all family functions and outings.
· Set aside special, individual time for your well children – even if it’s just a once a month parent/child date. Make that date sacrosanct, and if it has to be cancelled for a medical emergency, make it up asap. By the way, cleaning the garage together is not a date. Let the housework suffer and create some fun instead.
· Just as you may sometimes suffer resentment and guilt about your disabled child, remember that your well children feel the same. This is natural. Acknowledge and validate those feelings, and work with your well children to find appropriate outlets for them.
· Get family counselling. Think of it this way: if you’ve never gone mountain climbing, you wouldn’t just go to Mount Everest and start up - you would seek instruction. Each stage ofraising a child with a disability is something you’ve never done before. Take some “mountain climbing” lessons. Counselling will also give you a safe place and space to voice your biggest fear, your deepest anger, and your most profound grief.
· When you feel overwhelmed with the demands of treatments, care, housework, cleaning, outside commitments and pressures, STOP (Sit, Think, Observe, Plan) and regroup. This may take several days but it will pay off in clearer thinking and happiness.
· Recognize that you can’t control life by being afraid of it. So often we make our decisions from a place of fear. Fear separates you from your abilities. It does not protect you, nor will it alter an outcome. Instead, focus on your power to choose your response to any given situation – you can choose faith over fear, hope over despair, and allow yourself moments of joy even in the midst of sorrow.
· One of the good things about dealing with illness or disability is that it forces you to prioritize. That being said, don’t burden yourself with a lot of “shoulds” that you will just end up feeling guilty about. Know your limitations, and focus on your strengths. Take it one day, one hour, or one minute at a time.
· Make a plan for your disabled child to be cared for in the event of your own illness, injury or death. Don’t just leave it to the well-siblings.
· Make forgiveness a practice in your home – starting with yourselves.
In other news, Ella is being a champ with her broken leg. We get the cast on Wednesday. I'll be happy once thats on and the poor little leg is secure in a hard place, and the fear of knocking it into a gate or bumping it when shes sitting in the high chair (it sticks mostly straight out when shes sitting) is lessened. She has her moments of frustration, as any 2 yr old whose lost all of her freedom to roam would. I only have experience with 1 two year old, but she never really sat and played with one thing or in one spot for any real length of time, maybe 15min max. So now, the situation is pretty much the same, only when shes done in the spot shes in someone has to move her. And when her snack or baby doll or whatever falls off of the couch she calls for help. Or when shes coloring and drops a marker, she calls for help. Its taxing! I can't be mad at her though. Its not her fault. I joined Netflix to get some new movies to watch (we saw 15min. of Finding Nemo today). I'm just hoping when we see the Orthopedic doc to get the cast on Wednesday he tells us that its only a couple more weeks. Lord, if its gonna be 6mo. I might have 2 more on the move before she gets the cast off!