Well, it's been a few years since he's needed, what CFers call a tune-up. A tune-up is basically 10-14 days on strong IV antibiotics to clear out bacteria that is growing in the lungs. The antibiotics are too strong to be taken orally.
The last culture he had, he only grew Staph, which is easily controlled by general, broad spectrum antibiotics. He has been on and off antibiotics over the past two months, and he would get better on them, but off them after a few weeks, his cough comes back.
This past week, his cough turned into a horrible hack. I didn't even want to go to church Sunday, because his hacking would have disturbed the service. It's crazy. He can play baseball right now. He can run miles right now. But yet, he has to be stuck to an IV, in a hospital, like a sick person. He doesn't look sick. He barely even sounds sick. But, yet, his lungs are sick. I still find it strange.
This morning he had a mild fever. I made a quick call to the doctor. By this evening, the doctor had made the decision. It always feels like I'm sending him to jail. Thank God I don't have to do all this alone this time!!
September 24, 2012
August 21, 2012
Life Besides CF
This post has been in the draft folder for a while now. Partly due to not understanding the reality of what has happened over the past few years.
CF is not an easy road. It starts out with the diagnosis, which feels like falling out of a tree. You skin your elbows and knees, and limp along for a while, trying to act like it's no big deal. It really is, though. It ends up being this huge, enormous plunge into a scary, medical world. And, it's no fun place for a single mom.
Yeah ... single. Not in a legal sense. Not even in appearances to some. But single in the fact that every treatment, every pill or syringe administered, every tear cried over my first born, my baby boy, was done alone. It has been a major struggle. Some mornings, I would wake up and wonder, "Can I make it another day?" It felt, at times, like I was succumbing to isolation. Succumbing to this hospital in our home. When I look back over the past, nearly 9 years, I see a blurry whirlwind of hospital admissions, treatments, experiments with different medications, on a lung function roller coaster. Had I not done it alone, I'm sure it would have still been extremely difficult. But, I wonder if, had I had someone to cry on, someone to scream at about how CF is so unfair. Someone who would let me be unreasonable from time to time. I wonder how these past 9 years would have seemed. I was angry. Angry at the choices I had made. Angry at the cards that had been dealt to me. I was chained to the bed I had half-hazardously threw together.
I know it was all for a reason. I did it on my two feet, with my two hands. Having my parents so far away was hard, but mother's comforting voice over the phone line, and a prayer that would bring temporary relief at the end of a difficult day. Somehow, God has carried us through, even though it felt more like I was being pulled through it blindly. I made it through with broken limps, but still standing.
Suddenly, there was someone in my life. Almost like someone inserted an "end scene" smack in the middle of a dramatic argument. Suddenly, I was not alone and at first I didn't know what to do with this person I could lean on. This man that would listen to me scream about how unfair CF is. He would patiently hold me through my emotional moments. How this came to be, I can't figure out, but it is absolutely meant to be. The first few months of our relationship, I felt like I was staring at him with strange amusement, wondering, "Why the heck would anybody want to willingly be on this crazy CF roller coaster?" We were chatting online one afternoon, and one simple sentence he said impacted me so much, that I had written it down, and kept repeating it in my head: "You don't have to carry the world on your shoulders, Atlas". As hard as it was for me to admit it, I needed him, my hero, to wrap me up in his arms during the fast, downward plunges, and a beaming smile on the climbs back up.
Suddenly, I can be a better mother to these two kids. Not that I was a bad mother before, but, the best of me comes out. My broken limps are mending, and I stand taller. I realized soon after I met him that there is more to life than CF. I can focus on something else besides what medication comes next. I keep looking around and wondering if the sky has always been that blue. Has the birds always sang so cheerfully in the morning? CF is definitely still a roller coaster. It still feels like a monster that sometimes pins his lungs down in the middle of the night. It still hurts to hear him cough and hack after having a good laugh. CF "ain't goin nowhere", but I have four hands to beat the crap out of it now.
CF is not an easy road. It starts out with the diagnosis, which feels like falling out of a tree. You skin your elbows and knees, and limp along for a while, trying to act like it's no big deal. It really is, though. It ends up being this huge, enormous plunge into a scary, medical world. And, it's no fun place for a single mom.
Yeah ... single. Not in a legal sense. Not even in appearances to some. But single in the fact that every treatment, every pill or syringe administered, every tear cried over my first born, my baby boy, was done alone. It has been a major struggle. Some mornings, I would wake up and wonder, "Can I make it another day?" It felt, at times, like I was succumbing to isolation. Succumbing to this hospital in our home. When I look back over the past, nearly 9 years, I see a blurry whirlwind of hospital admissions, treatments, experiments with different medications, on a lung function roller coaster. Had I not done it alone, I'm sure it would have still been extremely difficult. But, I wonder if, had I had someone to cry on, someone to scream at about how CF is so unfair. Someone who would let me be unreasonable from time to time. I wonder how these past 9 years would have seemed. I was angry. Angry at the choices I had made. Angry at the cards that had been dealt to me. I was chained to the bed I had half-hazardously threw together.
I know it was all for a reason. I did it on my two feet, with my two hands. Having my parents so far away was hard, but mother's comforting voice over the phone line, and a prayer that would bring temporary relief at the end of a difficult day. Somehow, God has carried us through, even though it felt more like I was being pulled through it blindly. I made it through with broken limps, but still standing.
Suddenly, there was someone in my life. Almost like someone inserted an "end scene" smack in the middle of a dramatic argument. Suddenly, I was not alone and at first I didn't know what to do with this person I could lean on. This man that would listen to me scream about how unfair CF is. He would patiently hold me through my emotional moments. How this came to be, I can't figure out, but it is absolutely meant to be. The first few months of our relationship, I felt like I was staring at him with strange amusement, wondering, "Why the heck would anybody want to willingly be on this crazy CF roller coaster?" We were chatting online one afternoon, and one simple sentence he said impacted me so much, that I had written it down, and kept repeating it in my head: "You don't have to carry the world on your shoulders, Atlas". As hard as it was for me to admit it, I needed him, my hero, to wrap me up in his arms during the fast, downward plunges, and a beaming smile on the climbs back up.
Suddenly, I can be a better mother to these two kids. Not that I was a bad mother before, but, the best of me comes out. My broken limps are mending, and I stand taller. I realized soon after I met him that there is more to life than CF. I can focus on something else besides what medication comes next. I keep looking around and wondering if the sky has always been that blue. Has the birds always sang so cheerfully in the morning? CF is definitely still a roller coaster. It still feels like a monster that sometimes pins his lungs down in the middle of the night. It still hurts to hear him cough and hack after having a good laugh. CF "ain't goin nowhere", but I have four hands to beat the crap out of it now.
July 6, 2012
Back To Normal
His appointment Tuesday went well. The doctor is very pleased with his quick recovery. His lung functions are back to 102%. He gained a little weight and grew 1/2 a centimeter. It was tiring doing Cpt for an hour a day during the first week, but I think that, combined with running helped clear his lungs. He only cultured sensitive staph, so there is nothing new growing in his lungs. They can't eradicate the bacteria. They can only control flare-ups. So, as always, we continue to run and fight!
June 12, 2012
Not So Great, CF Clinic Day
Well, Azer has been going up and up with his PFT's. Everytime we have gone to clinic, his functions have been rising, as had his weight.
And here's the scoop... he has lost 3 lbs, his oxygen was 95% (lower than usual), and his PFT's were 68% today. That's 68% down from 110% in February. Quite the dramatic drop. Azer started just bawling because he was afraid he was going to be admitted. On paper, all of this looks just terrifying. The doctor took one look at the numbers and said it is the classic sign of an infection.
Sometimes it's hard to know when to call the doctor. One minute his cough may sound like he needs to be thrown into an ambulance, the next, he merely clears his throat, and he sounds fine.
Over the past month, his cough has been present, but I kept putting it off to allergies. It seems his cough has been becoming more frequent, but not productive.
The past few days, I noticed he sounded just awful in the morning, but it seemed to clear up as the day went on. Since school has been out, he rides his bike for several hours a day, goes swimming, and we have been still running as well.
So the plan is to obviously increase his breathing treatments, two weeks of oral antibiotics, and feed the kid. In two weeks, if nothing has improved, then we may face admission. He is quite relieved that he doesn't have to be in the hospital right now, as next week is the World Series tournament for his team.
And here's the scoop... he has lost 3 lbs, his oxygen was 95% (lower than usual), and his PFT's were 68% today. That's 68% down from 110% in February. Quite the dramatic drop. Azer started just bawling because he was afraid he was going to be admitted. On paper, all of this looks just terrifying. The doctor took one look at the numbers and said it is the classic sign of an infection.
Sometimes it's hard to know when to call the doctor. One minute his cough may sound like he needs to be thrown into an ambulance, the next, he merely clears his throat, and he sounds fine.
Over the past month, his cough has been present, but I kept putting it off to allergies. It seems his cough has been becoming more frequent, but not productive.
The past few days, I noticed he sounded just awful in the morning, but it seemed to clear up as the day went on. Since school has been out, he rides his bike for several hours a day, goes swimming, and we have been still running as well.
So the plan is to obviously increase his breathing treatments, two weeks of oral antibiotics, and feed the kid. In two weeks, if nothing has improved, then we may face admission. He is quite relieved that he doesn't have to be in the hospital right now, as next week is the World Series tournament for his team.
April 29, 2012
Great Strides 2012
Last year was a phenomenal year in finding a cure for CF. They isolated one strain and were able to make an effective treatment for it. This has also been an amazing year, CF wise, for Azer. His lung function has increased dramatically from the running, and his weight has increased to 60% BMI. He is the healthiest he has ever been.
I want to thank all those who walked/ran with us last year. If you have time available Saturday, May 19th, the CF walk is going to be at Fair Park in Dallas. Check in time is at 8am. Here is the link to register to walk, or donate, if you so wish.
Thank you to all who are involved in Azer's life and have made an impact on him. We look forward to another year of fighting CF!
February 18, 2012
CF Clinic Day!
Yesterday was another great CF clinic day. Azer's FEV1 on his Pulmonary Function Test was 110%! Again, he has surpassed his best results ever. His last clinic day, he got 106%. I am floored.
He also gained 2 lbs and grew about a centimeter. The doctor was thrilled. His BMI is 60%. So, the fact that he is gaining weight while running is fantastic. His appetite has been pretty good, considering the way he has eaten in the past.
I was looking at our dailymile.com page, as I haven't gotten into the profile area for quite some time. Under "goals", I had put "To be able to run for 30 minutes straight with my son. Jogging to increase my son's lung functions!". Well, We have surpassed both goals, and I'm proud of myself and of Azer. I never thought it was possible to increase is lung functions by running, but, it works. It really does. I'm not saying that this solves the daily battle of Cystic Fibrosis. I'm trying to remain realistic about it, but I am stoked that we have increased his FEV1 from the mid 70's to over 100%.
He also gained 2 lbs and grew about a centimeter. The doctor was thrilled. His BMI is 60%. So, the fact that he is gaining weight while running is fantastic. His appetite has been pretty good, considering the way he has eaten in the past.
I was looking at our dailymile.com page, as I haven't gotten into the profile area for quite some time. Under "goals", I had put "To be able to run for 30 minutes straight with my son. Jogging to increase my son's lung functions!". Well, We have surpassed both goals, and I'm proud of myself and of Azer. I never thought it was possible to increase is lung functions by running, but, it works. It really does. I'm not saying that this solves the daily battle of Cystic Fibrosis. I'm trying to remain realistic about it, but I am stoked that we have increased his FEV1 from the mid 70's to over 100%.
November 10, 2011
CF Clinic... and Awesome PFT's!
So ... Azer gained a pound. He is kind of leveling out on the growth chart. He had been closer to the 50th percentile during the summer. He is around the mid 30's in weight. The doctor isn't really concerned at this point, since he is height and weight proportionate. She noticed that his slower weight gain might have something to do with our running, but she said the last thing she wants is for us to stop running.
And here is why: his best result from today's PFT was 106% FEV1. Heck, yeah! He has never scored 100% on a PFT. So the doctor said, for a normal child with no CF, he scored above average. I almost cannot believe that at the beginning of this year, he was hovering in the mid 70's and only got higher than that after a week of antibiotics. And here we are, nothing changed... cold and flu season, and he scored 106%.
So the plan of action? Keep running.
Next month, we will have officially been running for a year. It was around March where we finally built ourselves up to the point where he and I could run for 30 minutes straight without taking walking breaks.
Since it's been a while since I've talked about it, we started running using this plan.
http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html
It was Ronnie Sharpe that originally had encouraged me to start getting Azer to kick up the exercise a notch. I definitely feel like we are more in control of CF right now. So, thank God for His wisdom and guiding me in this CF journey!
And here is why: his best result from today's PFT was 106% FEV1. Heck, yeah! He has never scored 100% on a PFT. So the doctor said, for a normal child with no CF, he scored above average. I almost cannot believe that at the beginning of this year, he was hovering in the mid 70's and only got higher than that after a week of antibiotics. And here we are, nothing changed... cold and flu season, and he scored 106%.
So the plan of action? Keep running.
Next month, we will have officially been running for a year. It was around March where we finally built ourselves up to the point where he and I could run for 30 minutes straight without taking walking breaks.
Since it's been a while since I've talked about it, we started running using this plan.
http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html
It was Ronnie Sharpe that originally had encouraged me to start getting Azer to kick up the exercise a notch. I definitely feel like we are more in control of CF right now. So, thank God for His wisdom and guiding me in this CF journey!
October 16, 2011
Emotions... argh...
Just a quick little note mostly for myself to get it out.
I've done it at least 10 times at this point. His G-tube button looked loose, so I checked to see if the balloon had enough water in it. It was low, so I had to pull the button out to check the balloon to see if it was leaking. When I pushed it back in, it didn't go back in so smoothly, and it was a bit painful for him. I did not show him that it hurts me just as much. It usually doesn't affect me, but it did this time. Maybe because it was me that caused the pain, in a way.
That boy can get on my last nerve, but it rips my heart to pieces when he suffers. I know life is not meant to be painless, but when the pain is caused by CF, even indirectly, I want fix it for him.
I've done it at least 10 times at this point. His G-tube button looked loose, so I checked to see if the balloon had enough water in it. It was low, so I had to pull the button out to check the balloon to see if it was leaking. When I pushed it back in, it didn't go back in so smoothly, and it was a bit painful for him. I did not show him that it hurts me just as much. It usually doesn't affect me, but it did this time. Maybe because it was me that caused the pain, in a way.
That boy can get on my last nerve, but it rips my heart to pieces when he suffers. I know life is not meant to be painless, but when the pain is caused by CF, even indirectly, I want fix it for him.
October 6, 2011
8 Years...
Eight years ago, my life changed forever. When I held that sweet, little baby boy in my arms, I felt instantly bonded with him.
After I found out he had CF, there were times I felt completely devastated. As if I didn't know how to go on. Other times, I felt incredible strength, as though I could fight and kill CF with my bare hands, and make all the bad parts of his life go away. Without God and my parents, I could not have made it this far.
Through the hospitalizations, helping him through physical pain, and spending weeks alone with him, we both strengthened each other. The older he has gotten, I've realized that I've helped him fight CF for 8 years, but in return he has helped me fight it as well. We are partners in fighting CF, and this past year, we have been jogging partners as well. At times, it feels like we are running away from CF, putting more miles between him and the hospital.
These past 8 years have been both difficult and happy at the same time. Trying to maintain an appearance of "normal" life to the outside world, and trying to maintain this routine of treatments, feedings, antibiotics, pills, pills, pills ... the "fighting like mad" to avoid the hospital. Still, I wouldn't have it any other way. It has been an absolute blessing to watch this baby become an independent, social, outgoing, caring little man.
Happy Birthday, my little man.
After I found out he had CF, there were times I felt completely devastated. As if I didn't know how to go on. Other times, I felt incredible strength, as though I could fight and kill CF with my bare hands, and make all the bad parts of his life go away. Without God and my parents, I could not have made it this far.
Through the hospitalizations, helping him through physical pain, and spending weeks alone with him, we both strengthened each other. The older he has gotten, I've realized that I've helped him fight CF for 8 years, but in return he has helped me fight it as well. We are partners in fighting CF, and this past year, we have been jogging partners as well. At times, it feels like we are running away from CF, putting more miles between him and the hospital.
These past 8 years have been both difficult and happy at the same time. Trying to maintain an appearance of "normal" life to the outside world, and trying to maintain this routine of treatments, feedings, antibiotics, pills, pills, pills ... the "fighting like mad" to avoid the hospital. Still, I wouldn't have it any other way. It has been an absolute blessing to watch this baby become an independent, social, outgoing, caring little man.
August 11, 2011
CF Clinic
Yay, great clinic day!
Well, I was so sure his PFT results today was going to be terrible, as his wet cough is still there. He blew 95% FEV1 which is the best result since 2009. The doctor was pretty amazed at that result. He lost a few ounces, but grew a little bit. They aren't extremely concerned with his weight, but the dietitian wants me to try to add a half a can extra through his G-tube.
The doctor wants me to continue with the antibiotics and the increased treatments. He may be on the antibiotics for a full 14 days depending on how his cough sounds on the 10th day. The doctor wants to really knock whatever it is out of his system, since it originated in his sinuses.
The dietitian made me feel more relaxed as far as Azer not eating. She was basically saying there is no reason to be forcing food in his face if he is just not hungry. So, I guess at this point we are focusing less on eating and are being a bit more dependent on the G-tube. I'm not sure how I feel about that, since they have mentioned they didn't want him to be completely dependent on the G-tube, but I am so grateful that we have it as a tool to fight CF!
Well, I am just thrilled about his lung function! I guess we are going to keep on running!!
Well, I was so sure his PFT results today was going to be terrible, as his wet cough is still there. He blew 95% FEV1 which is the best result since 2009. The doctor was pretty amazed at that result. He lost a few ounces, but grew a little bit. They aren't extremely concerned with his weight, but the dietitian wants me to try to add a half a can extra through his G-tube.
The doctor wants me to continue with the antibiotics and the increased treatments. He may be on the antibiotics for a full 14 days depending on how his cough sounds on the 10th day. The doctor wants to really knock whatever it is out of his system, since it originated in his sinuses.
Well, I am just thrilled about his lung function! I guess we are going to keep on running!!
August 9, 2011
Antibiotic Time
Well, we've had a good, long run without any need for antibiotics, or increased treatments. I knew it was coming eventually. I just didn't expect it while it's still summer.
It started two weeks ago, with a drippy, stuffy nose. After a few days, I could hear it migrating into his lungs. This past week, I could hear that deep, junky cough. The mucus has been white to clear, no I'm hoping there isn't anything too major going on in there. When I listen with the stethoscope, I can hear squeaky noises. I'd had already started increasing his treatment time. I know he has lost some weight. His appetite hasn't been great at all. Some days, he won't eat anything all day long, and then eat a very small amount for dinner. Thank God for that G-tube!
Well, I called the doctor yesterday, and he prescribed Augmentin. This time, instead of liquid, it's these gigantic pills. Their seriously huge. They looked at his previous culture, and it was just Staph and normal flora. So, I am really cracking down with treatments now. Yesterday we managed to get in 2 hours worth of Vest time. We are definitely keeping up with the running during this, as well.
I hate it when he gets sick, and I know it just by looking at his face. The paleness comes back, and he gets dark circles under his eyes. I hate seeing CF on him. It's like an entity that overtakes him... well, in my mind. It's always strange to me that, as many times as I've done this, it still overtakes my thinking. I mean, I've been through this so many, many times. Seeing him get sick, increase treatments, start extra medications, start antibiotics. It's really not a big deal. But, somewhere inside my head, I'm going, "This is a big deal, this is not good, yep ... this is a good opportunity to freak out. Yep, we are out of control here!".
Our CF appointment is next week, so hopefully with the antibiotics, the running, and endless days of breathing treatments will get it cleared up!
It started two weeks ago, with a drippy, stuffy nose. After a few days, I could hear it migrating into his lungs. This past week, I could hear that deep, junky cough. The mucus has been white to clear, no I'm hoping there isn't anything too major going on in there. When I listen with the stethoscope, I can hear squeaky noises. I'd had already started increasing his treatment time. I know he has lost some weight. His appetite hasn't been great at all. Some days, he won't eat anything all day long, and then eat a very small amount for dinner. Thank God for that G-tube!
Well, I called the doctor yesterday, and he prescribed Augmentin. This time, instead of liquid, it's these gigantic pills. Their seriously huge. They looked at his previous culture, and it was just Staph and normal flora. So, I am really cracking down with treatments now. Yesterday we managed to get in 2 hours worth of Vest time. We are definitely keeping up with the running during this, as well.
I hate it when he gets sick, and I know it just by looking at his face. The paleness comes back, and he gets dark circles under his eyes. I hate seeing CF on him. It's like an entity that overtakes him... well, in my mind. It's always strange to me that, as many times as I've done this, it still overtakes my thinking. I mean, I've been through this so many, many times. Seeing him get sick, increase treatments, start extra medications, start antibiotics. It's really not a big deal. But, somewhere inside my head, I'm going, "This is a big deal, this is not good, yep ... this is a good opportunity to freak out. Yep, we are out of control here!".
Our CF appointment is next week, so hopefully with the antibiotics, the running, and endless days of breathing treatments will get it cleared up!
June 21, 2011
It's Been a Year!
One year ago, Azer got his G-tube.
I was looking at this picture, taken about a year ago, not too long before he was evaluated for getting a G-tube. He looks so pale, so thin. In this picture, I can really see CF. Yes, the jersey is too big for him, and yes he's had a year to grow bigger, but things are different now.
So, I decided to take a picture of him in the same jersey.
This was taken after he'd had the button for a few weeks.
And now,
So, was having surgery and all the pain worth it?
Yep.
I was looking at this picture, taken about a year ago, not too long before he was evaluated for getting a G-tube. He looks so pale, so thin. In this picture, I can really see CF. Yes, the jersey is too big for him, and yes he's had a year to grow bigger, but things are different now.
This was taken after he'd had the button for a few weeks.
And now,
So, was having surgery and all the pain worth it?
May 24, 2011
Great CF Clinic!
Azer gained about a pound and he grew about 1/2 an inch! Best news of all, his PFT result was .... 91%! So, there is definite proof that all this running his helping his lungs! I was amazed at how deep of a breath he was able to take during the test. So, the proof is not only in the number, but in appearance as well.
The doctor seemed very impressed with how he looked, and recommended we continue all the exercise. We've been running 3 miles every other day, and Azer will lift 25 lbs on the arm machines in the gym.
Azer has been experiencing quite a bit of leg pain, mostly in the upper thigh to hip area, during exercise. He's fine when he's walking, but running for a while and playing baseball seems to trigger the pain. I had been giving him a lot of ibuprofen. Aleve seems to be working much better for him, as it allows him to exercise with almost no pain. Our CF doctor recommended we make an appointment with an orthopedist to rule out any problems, and make sure there are no problems that could get worse over time.
The doctor seemed very impressed with how he looked, and recommended we continue all the exercise. We've been running 3 miles every other day, and Azer will lift 25 lbs on the arm machines in the gym.
Azer has been experiencing quite a bit of leg pain, mostly in the upper thigh to hip area, during exercise. He's fine when he's walking, but running for a while and playing baseball seems to trigger the pain. I had been giving him a lot of ibuprofen. Aleve seems to be working much better for him, as it allows him to exercise with almost no pain. Our CF doctor recommended we make an appointment with an orthopedist to rule out any problems, and make sure there are no problems that could get worse over time.
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