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!

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.

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.

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!!


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!

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.

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.

May 21, 2011

Great Strides 2011!!

Wow! I'm not sure of the exact amount right now, but I believe we raised more than $2,000!!

We actually had a team this year. It was such a great time spending time with people that care about Azer. They have been so supportive. I couldn't have asked for a better group of people. I just couldn't wrap my brain around the fact that these lovely people came out on a foggy, humid day to go walk 3 miles for Azer and for CF. Someone even came even though she couldn't actually walk with us due to a minor injury.

Azer ran next to his teacher the whole way. I'm not sure of his time, but I couldn't even keep up with him. By the time I got over the finish line, he was already chilling with her. He ran the whole entire time. That kid just amazes me.

He had fun with his team mates that came. Lol, he was so hyper before the walk. They all were, really.

I'm so thankful for this day, and for all the support. It makes me feel like I'm not alone in this daily fight with Cystic Fibrosis. I pray there is a cure for CF soon.

May 1, 2011

Morning Bolus

Azer showing you all how he does his morning bolus ... all by himself!

April 24, 2011

New G-button

At our last visit with the GI doctor, she mentioned Azer could get a flatter G-button. Azer has been excited about it ever since.  So, last week was the appointment to put it in. I could do it, but something about getting insurance to cover it, it had to be placed by the nurse the first time. When she pulled his Mic-key out, she said his stoma is one of the best she's ever seen.

It is an AMT Mini One button.


 It can use the same extensions as the popular Mic-key button.


I like the extensions that come with it though. The medication port usually pops open on it's own on the Mic-key extensions.

But, this has been made out of some thicker, stickier sort of silicone.



So, we don't need to tape that part like we usually do.

The button itself isn't as "tall" as the Mic-key, so it is flatter to his body. Nice that it doesn't stick out so much. It is also more flexible. The nurse mentioned that it is a little harder to get the extension in, but Azer doesn't have any trouble with it. This button sits "above" the skin like the Mic-key does, so it allows for air flow under the button, as well. The balloon that sits inside the stomach wall is shaped more oval, and is supposed to provide a better seal to minimize leaking. Another interesting thing is that you can adjust how much water is in the balloon based on comfort. Azer came home with 8 ml's of water in the balloon, but he said it "tickled". I think he could feel the balloon on the inside. I took out 2 ml's of water, and he said he couldn't feel it there anymore, so I guess we got it right.

April 11, 2011

Very Cool Weekend!

This weekend was the CF Family Info Day at our clinic. It was fantastic, and I learned SO MUCH! I even met two lovely ladies from CysticLife.org which was very cool. It made me feel like I'm not the only one going through all this! It was just amazing to sit in a room filled with people that either have CF, or were parents/guardians of people with CF, and they all have the same kind of thinking. Some were in the very beginning of their CF journey, and some had been dealing with it for more than 20 years. It was also amazing to hear one of our pulmonologists speaking in such great deal about CF, and possible future medications. A small group of us got to "pick her brains" for a while at the end, too. It really makes me appreciate what a great CF team we really have. I felt like a kid pointing out to my CysticLife friend all the amazing people on our CF team.

Azer has been doing great, I think. He threw up a few days ago, had a sore throat and a fever. The next day, he was fine. This week, Reema ended up with the same thing, so it was obviously a virus. I have noticed that when Azer gets a virus, he recovers from it much more quickly than Reema (unless it's the kind that graduates into your chest).

I have noticed improvements in his pain when he takes ibuprofen before we run, or before he has practice. I gotta say, I also notice when he does not take it. So, it is helping. I'm trying to keep plenty of salt in his body by adding some to his Gatorade, to his morning bolus and his night feed.

April 5, 2011

Bummer CF Appointment

The doctor said Azer looked healthy and great. It's just those darn numbers.

He lost a whole pound. But, I suppose we can blame that on how much running we've been doing. Plus, he hasn't been eating but one meal a day. Lunch time is only a snack.

His FEV1 was only 78% today. After the doctor listened to him (his lungs sounded crackly and wheezy), the doc sent us back to do a breathing treatment. I don't remember the name of the medicine Azer inhaled, but it basically was a strong type of Albuterol. We did a second PFT test 10 minutes after that, and his FEV1 was 77%. So, clinically, there was no difference made by the medication.

The doctor said that even though his allergy tests did show he was allergic to Aspergillus and lots of other things, it wasn't high enough to make the doctor think Azer needs allergy shots. So, we are going to try Flovent three times a day, instead of twice a day.

I've always said Azer gets leg pains during exercise. Sometimes it seems like Gatorade helps, most of the time, it doesn't though. Sometimes when we run, Azer has such severe leg pain that he cries. It happened at his last baseball game. He was crying because his legs hurt that bad. Time and time again, I've asked the doctors and pediatricians. Nobody has a clue. The pediatricians wrote it off as grown pains, only because they couldn't say it was anything else. Our doctor said today that it was possible Azer has arthritis. Arthritis. That word freaks me out. The good news is, the doctor said Cystic Fibrosis related arthritis isn't known to cause degeneration of the joints. Ibuprofen is supposed to help a lot. So, I guess I should plan on giving him ibuprofen before any physical activity.

Otherwise, the doctor was very happy with Azer's overall appearance, and he wasn't too concerned about  Azer's noisy sounding lungs and weight loss. I wish I could say the same about myself!

March 27, 2011

Can We Call Ourselves "Runners"?

It's been about 2 weeks of running for 30 minutes straight... with no walks in the middle. Just straight running. I have to be honest. I can't tell you of once where I just willed myself to run for 30 minutes straight. I don't think I've ever even wanted to run for 30 minutes until we started this running program. But, it feels so good.

Since we've been really pushing it and doing 2-3 miles every other day, I can't tell you if he's even coughed once during the day. I've really heard an improvement in his lungs. When we first started running, he would run for one minute and cough for so long, I wondered if I was hurting him by encouraging him to keep running.  Now, the kid can run faster than me, and talk while doing it. We must be doing something right!





Yesterday was Azer's first baseball game of this season! Azer is loving the team he is on this year (he's been wanting to be on a team called the "Rangers" ever since he started playing t-ball) and wow, has he improved since the fall.

March 25, 2011

Azer Talking about CF



He wanted to do this, so this was all  his idea. I think he has some good things to say.

March 20, 2011

Outrun CF 2011

For all you participating in the Great Strides walk on May 21st, that is different, so don't freak out and go, "Oh dear, I missed it."

http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-2011
"The Rock CF Foundation and CysticLife are joining forces to Out Run Cystic Fibrosis and you are invited to help! If you are not running the Rock CF Rivers Half Marathon or 5K March 20 on Grosse Ile, MI but you still want run with us, this is YOUR race! On March 20 you will find a route or race by your house, lace up your joggers and hit the road in your Out Run CF shirt. You are doing this for yourself and you are doing this for the 70,000 people worldwide living with cystic fibrosis."

 Azer and I (and Reema on her bike) ran 5k this morning, and walked a few times in the middle, because his hip were aching. But we made it! I followed Azer the last half mile, and when we were getting close to the end, Azer started to run really fast. It totally felt like we crossed the finish line!


I hadn't received my "Outrun CF" shirt yet, because I signed up late. So we wore our "Joggers for Azer" t-shirts. On the back they say, "Cure Cystic Fibrosis". At the end of the run, a guy on a bike passed us and said, "I like what your shirts say. Thank you." I'm thinking he had some connection to CF.





March 18, 2011

Ta-da!

We have finally reached the end of running program!

http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html

We can now run for 30 minutes straight. We are trying to do this 3-4 times a week. The first day we ran for 30 minutes straight, Azer says, "So, what's next?". Lol. How is it possible that he's the one with a chronic lung condition and he can jog and talk non-stop the whole way? And I'm the one huffing the whole time. Reema hasn't been very happy about the exercise. There are unlimited amounts of complaints that she can think of. She moans and whines the whole time. Those kids ... opposite ends of the spectrum.



The back end of the armadillo. 

This has been a very busy week. The word "break" in Spring Break doesn't apply in our house. We have been doing our runs, walking miles and miles on beautiful walking trails. The day before yesterday we rode about 14 miles on our bikes, wading through rivers, and we saw an armadillo in real life! (We are so not in Kansas, Toto).

March 5, 2011

The New Vest Arrived!

We knew the knock at the door had to be the delivery guy. Azer started jumping up and down when we saw the giant box sitting in front of the door. After almost a week of CPT, we were SO excited to have the Vest back. Azer closed his eyes in anticipation to see the color of the new Vest, red, like he wanted it. I almost felt sorry that he was excited about medical equipment, but I gotta admit, I was as excited as he was. You really appreciate something when you don't have it for a while!

March 4, 2011

Great Strides Walk 2011!!

We are a team this year called Joggers for Azer! If you would like to walk with us on May the 21st, just sign up here and join our team, click here and let me know what size T-shirt you would like! If you cannot walk with us, you may also go to the link posted and donate to the CF Foundation.

To all who have already donated, thank you so much and sending lots of love back!

 


Great Clinic Day!

We saw the GI doctor today. Azer hasn't vomited once since starting the Bethanechol which helps his stomach empty faster. It is a very gentle medicine, which seems to be perfect for Azer. His FEV1 was 83%! Which means his lung function went up 10% from two weeks ago.

The results from his allergy test seem to mean that he does have a moderate allergy to mold, but the GI doctor couldn't really answer many questions about it specifically, but from what I gathered, Azer may need more steroid type medications if he has a flare up. We will see the pulmunologist next month for more answers on that.

Azer also gained another pound in 2 weeks, making him 53 lbs. They were all very happy with how he looked. I'm so glad everything is working so far.

The doctor said his left ear still looked red inside, but it's not hurting him, so hopefully by the time the antibiotics are over, it will be cleared up!

March 1, 2011

Ear infections....

Last night, Azer's Vest machine quit. Not totally quit, it just won't inflate the vest. Booo .... so I have to wake up 30 minutes early in the morning to do CPT before school, because I can't do it at the same time he does his nebulizer meds. It's sort of nice to do it at night. It's kind of relaxing in a way, sitting there watching Sponge Bob for 30 minutes straight. It's coming on Friday. He also gets to move up a size in the Vest, and this time he got to choose the color ... he chose a red vest .... anything is better than the same old green we've had for like 3 years. This machine has logged about 500 hours on it. Wow.

Everything has been perfectly fine. No coughing whatsoever. No vomiting. Stools have been great. Surprise! This morning, the school nurse called to me let me know that he was in the office, looked terrible and his ears hurt. I pulled Reema out of school early, and drove to the pediatricians. He had no fever, but his left ear was very red inside. In his middle ear, there is a part that will bulge when there is fluid build up behind the ear drum. The doctor said that it's possible his ear drum might be ruptured. But, in that case, it's much less painful, because it releases all the fluid. He will be on antibiotics (the pill is gigantic too) for 5 days.

On the way home, his ear was really hurting bad, and I could tell he had a fever. I gave him an Ibuprofen at home with some Gatorade. His baseball coach decided to have a spur of the moment practice. Of course, Azer wanted to do go, despite the fact that he was crying because his ears hurt. By the time I got to practice, he was bouncing up and down and ready to play ball. That kid amazes me.

February 24, 2011

Decorations & A Poem

 With a lot of help from Grandma and the craft store, and a little glue here and there, we have successfully turned the IV pole (G-tube pole) into something that looks a bit more ... interesting.



I think it's got to be the first ever baseball themed IV pole.

I'd also like to post a poem I wrote, and I won first place on Mary Beth's poetry contest!
http://patientpress.blogspot.com/

First Place: He's Not Gaining Weight

by Lydia Samad

Lydia Samad is the mother of a 7 year old boy with Cystic Fibrosis. She lives in Texas, and her website can be found at AzersCFWebsite.com

He’s not gaining weight.

Feed him more frequently,

more calories, more glasses of milk.

I’m sick of this. What do they expect me to?

Watching him sit at the table.

Chewing each bite for ages.

Frustration.

Why can’t he eat faster!

He’s not gaining weight.

Pushing, forcing, coaxing, convincing, lectures.

Just one more bite.

He’s not gaining weight.

Try these milkshakes. Lots of fat. Surely this will work.

Blenders running all day long.

Countless tubs of ice cream.

Millions of gallons of milk.

He’s not gaining weight.

Doctors and dieticians. We’ve tried these options, you’re not a failure.

He’s not gaining weight.

Facing surgery. Feel like blaming my child.

Feel like blaming myself.

Pointing fingers at self.

If only I had given him two more bites.

Just forced and prodded a bite more.

No, it wouldn’t have worked.

He’s just never hungry.

Doctors and surgeons talk to me.

Day of surgery.

Feeling like this is my fault.

My heart is in my throat.

Trying not to throw up.

What will my life be like next week.

My son is mad at me. “I don’t need a G-tube.”

“Please Mommy. I’ll drink my milkshakes faster. I don’t want this thing in my body.”

He’s being sedated.

Try to be strong for him.

Tell him things will get better.

It’s my son’s turn.

The sedation medication is going through his veins.

He’s not nervous anymore.

One more sweet kiss with my son before he’s wheeled through green double doors.

Telling myself not to break down.

It’s a minor procedure.

Waiting, pacing, nervous.

Texting family and friends.

Finally the surgeon comes out.

Everything was fine.

He was in capable hands.

Feeling grateful.

Time to see him. Nurse warns us it will be noisy.

What does that mean?

Walking through strange hallways.

Bracing myself for what I will see.

Curtains hanging around each child.

Countless children waking.

They are crying and moaning. Are they in pain?

One child is crying and trying to get out of the bed.

One girl moans, and looks like she had surgery on her head.

God, why must these children suffer?

My ears are filled with the sounds of children crying.

Oh God, what will my son look like?

Will he be crying?

Will he be in tremendous pain?

Nurse points, there he is.

The familiar face I know and love.

His stomach is covered with blankets. I want to see what it looks like.

My son’s eyes meet mine and he starts to cry.

What’s wrong, honey? Does it hurt?

More morphine. It still hurts.

His cries join with the cries of the children in the room like a chorus.

Be strong for him.

“I’ve done this to him. I’ve caused him to suffer.”

Back to our hospital room. He’s sleeping, moaning.

The day goes by at an agonizing pace.

Too slow.

Afraid to touch him, to move him, afraid of hurting him.

Nurse explains information.

Too much information. My head is spinning.

It’s too overwhelming. I don’t understand what she’s saying.

Giving me phone numbers, numbers of sizes,

numbers of milliliters per hour.

Why is she talking so fast?

“Call me if anything goes wrong”.

What?

Fear.

Trying to hold back tears.

A sleepless night.

He’s crying in his sleep.

I finally drift off.

Metal clangs in our room and I startle awake.

A nurse is removing tubes from his stomach.

I can see the button now.

It’s not so bad.

Shouldn’t there be bleeding? That looks pretty clean.

My son looks down at the button.

He looks up at me and smiles.

“Wait till my buddies see this! They will think it’s cool!”

Making jokes.

“You have a balloon inside of you. I knew you were always full of hot air.”

Time goes by faster.

He’s walking across the room.

Another day and it’s time to go home.

New fears.

Can I do this myself?

A metal pole with a machine in my child’s bedroom.

That doesn’t belong here.

More medical equipment to decorate our home.

Cans of formula, plastic tubes and syringes.

I can’t do this.

It’s too difficult to manage.

I sleep on the floor next to him.

Afraid to leave his side.

I drift off to sleep.

Morning sun hurts my eyes.

I look at my son’s bed. He’s not there.

The metal pole is missing.

I hear noises coming from the kitchen.

My son is rolling on the metal pole like a scooter.

He is happy.

The next week rolls by as fast as his new scooter.

Doctors and dieticians, waiting to find out the news.

He has gained weight.



February 23, 2011

No Vomiting!

So far, there has been no vomiting, and no loose stools. He is tolerating the Bethanechol well so far.

The prednisone is done, and he sounds great. Much less coughing than last week, and his stamina has been fantastic.

We're on Week 4 of the running plan. I'm making it. Azer is flying through it this week. He is running way ahead of me and doesn't have coughing fits during it. I really think the two puffs of Flovent is helping a lot.


I noticed his allergy test came back from last week, and I can look at it online, but I'm not sure what it means exactly. I guess I'll have to wait until next week at his appointment and see what the doctor says. But, I feel good about it. It makes sense that all this time he's been on antibiotics and his cough hasn't gotten better, that his wet cough has been due to an allergic response to mold in the air.

Since baseball season has started, he's started to have leg cramps, just like last year. The doctors don't seem to have much to say about it. His vitamin levels are all totally normal, and he is staying hydrated. I've been putting Gatorade through is G-tube, as he just won't drink enough of it on his own. It seems that is the only thing that makes the leg cramps go away. I'm just glad he can run the bases and not have a major coughing fit that not even Albuterol can stop.

February 19, 2011

What's a Wife for?

When Azer watches Spongebob for the 100 trillion, quadrillion, quintillion, sextillion, septillion (I could go on, you know) time, I wonder at times if he actually does have a brain inside that's not yellow and squishy. But he does.

So, Azer and I were talking about the reason I'm trying to get him to do more of his CF care himself. That someday, he will be responsible for the treatments and all the meds when he lives on his own.
Azer said, "Well, I won't have to do it ALL by myself."
Me: "Hmmm.... why won't you have to do all of it by yourself?"
Azer: "Well, my wife is going to help me do it!"

And yesterday while doing our run, Azer started laughing out loud to himself (this happens a lot). He said that he thought it was funny that everyone in the world is trying to lose weight and he's the only one trying to gain weight and that it's really easy for him to lose weight. Losing weight easily is not something to be envied!

February 18, 2011

CF GI appointment

We woke up extra early today because he had a early appointment this morning. He threw up his morning bolus within minutes of getting it down, unfortunately. 

Well, there are good things and not so good things.

Bad thing: His FEV1 is only 73%. His cough is not entirely clear. The doctor heard sort of an asthmatic wheezing when she listened to him. He had a very high result on an allergy test last month. They did another blood test today to test for specific allergies to aspergius. Apparently, this will help them treat the allergy/asthmatic component he has.

Good news: We're back to 52 lbs!! He grew a little bit. His vitamin levels they took last month were all fantastic. They are really happy with how he looks as far as weight gain and growth.

The treatment: Since the Erythromycin (for GI motility) did NOT work out at all, we are trying a gentler kind, bethanechol, on a low dose to see if we can stop the vomiting. We are starting Prednisone to help his lungs, and we are also increasing the Flovent.

Doctor said if there is not much improvement in his lungs, we might be facing a hospital admission soon. I don't want that for him right now, because baseball practice has started! And he's doing awesome at it so far! So, I'm hoping the steriods will help improve things quickly!

February 10, 2011

Sort of Better?

Tuesday morning, I rushed Azer to the pediatrician because I was nearly in a blind panic because his cough just wasn't getting better. I hate it when I hear that deep, mucusy cough, and I just get a terrified feeling when I hear it. After being stuck in a tiny room for three hours, and doing another X-ray, I was basically told to just continue doing what I'm doing.

His X-ray showed some improvement. The CF doctors never mentioned this term before, but the pediatrician said there was "atelectasis". The doctor said not to think that it was about lung collapse, but that it was more like mucus plugs in the lower left lobe. So, I've been trying to focus CPT in that area to try to clear that out. Otherwise, his X-ray is improvement since Saturday. I am continuing the Clindomycin. His diarrhea has improved since I changed the type of probiotics he's taking. He is coughing and spitting up mucus during CPT. I don't notice him coughing up mucus during the Vest.


This morning, he threw up again. Later on this afternoon, he was bringing groceries and he ended up getting something that was like an asthma attack, and he had a terrible coughing fit, and his face started looking slightly gray. So, a quick nebulized Albuterol and a 15 minute Vest treatment ended it quickly.

So, sometimes it is obvious he's getting better, and other times I just don't know. But, we'll keep pounding away at him. :)

February 6, 2011

How to Cure CF

From a 7 year old's mind:

Azer: "I wish the doctors could make time go backwards and fix your's and Daddy's genes. And then I would be born without CF. That would cool".

ER and Home


I took Azer to the ER yesterday afternoon. I kept hearing that weird wheezing noise every now and then when he coughed. It just totally terrified me, and I was afraid of what his lungs would look like. So, I called the CF doctor, and he said for peace of mind I could take him into the ER.

We were only there for a few hours, but we got X-rays done. The first nurse who listened to him said she heard wheezing in his lungs. About an hour later, the doctor who listened to him said he sounded clear. Azer says, "You know those doors to the hospital? Their like magical doors. As soon as you walk through them, all your sickness just disappears." It seems this was kinda true yesterday. His X-ray was mostly clear, but another doctor said it looked the same as the last one. The last one showed pneumonia, so I'm not exactly sure what it looked like.

I was then given a choice to admit him, or to try the antibiotics at home like previously planned. I chose home! Anything to not be there at the hospital. I really hate it when the doctors ask me what I want to do. I don't want it to be up to me. Their the doctors!

So, I'm praying the antibiotics clear up this wet, mucus. But, I'm also praying that he doesn't get C-diff issues again and have constant diarrhea like last time. That was not fun. I want this kid all cleared out in time for baseball! We might (weather permitting) have our first try-out/practice next week!

February 5, 2011

Worse Coughing

About an hour ago, Azer coughed, and when he inhaled, he made a weird wheezing noise, as if it was hard to get the air in. There just seems to be so much mucus in there.

So a call to the doctor, and we're going to try another oral antibiotic. Doctor said if there is no improvement in 48 hours, we will be admitted. So, hopefully things get better. I'm tired of the antibiotics, and the improvement for a week, and then things go downhill again. Frustrating.

Last night, three hours into his night feed, he threw up his formula. So, I stopped the feed, and gave up with it. Things seem to be just fine GI wise today.

February 4, 2011

Sliding In Snow Can Be a Treatment Too!

After we had more than a few inches of snow, we decided to enjoy it while it lasted. It only happens once a year year, if we're lucky.

So they slid down the hill, ran up, slid down, ran up. For hours, and hours. And Azer coughed up a lot of mucus!

video


He threw up about an hour after his bolus feeding this morning. I just don't understand what brings it on. Everything is the same, and nothing changes, but one day everything is fine, and the next day, we lose a feed. He says he feels goopy and yucky before it happens (I'm thinking that's his words describing "nauseous"), and then he can feel the formula shooting up, and he said it can be really painful. Like his stomach really hurts during those episodes. :( It's so frustrating not being able to fix it, even after seeing a GI doctor.

February 3, 2011

Junky Cough = More Treatments

He most definitly has a productive cough today. In other words, his cough is definitely junky today. Very wet and mucusy. The doctor wants to wait for antibiotics since Azer was just on them like last week.

So, we are being aggressive with treatments. I have added a few CPT sessions in between the vest treatments. I notice he coughs up mucus during CPT, and he really doesn't cough up nearly anything during the vest.

The Acapella worked very nicely this afternoon. Yeah, he's going out of the shot to spit out the mucus. Might be gross to some, but to me it's great to see it come out! He is doing albuterol along with the Acapella.

video

January 31, 2011

Week 2!

http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html

We officially graduated to "Week 2" today. We ran much slower than we have previously, thanks to suggestions from Ronnie :). We did great, and made it through fairly easily.


Azer's cough has been wet-ish for the past 2 days. I'm not sure what's going on there, but hopefully it will clear up on it's own!

January 28, 2011

Feelin' Good

Azer has only been stooling about twice a day now. Flagyl and Augmentin are over. He's not been coughing much at all. His appetite is sort of there one day, and gone the next, but he's not been refluxing nearly as much as when he was on 4 1/2 cans a day. I think it was just too much for him.

Off and on, he still has been vomiting right at the end of his night time feed. I just think it's weird that it's only after night feeds. We've slowed them down, sped them up, no change. It's strange and exhausting.

The jogging program has been going well. But we are still stuck on Week 1 of the plan. We can't seem to run for more than a minute at a time. So, we're just walking less in between running for a minute. The kids and I feel great and energized, and we look forward to the time spent together exercising. It's a great bonding experience. Happy kids = happy home!

January 24, 2011

Non-CF ER visit

Just where I wanted to be in the afternoon after school. And it was almost entirely my fault.

Usually after Azer exists his school, he comes running full speed at me, and hugs me, and then proceeds to drop his backpack and water bottle on me. Well, I was trying to squirt the remaining water in the bottle onto him. He ran laughing away from me. He turned around near the wall of the building, and just as I squirted water on him, he jerked his head back, and banged it into a pipe, sort of thing sticking out of the school. It gave him a good cut right on his eyebrow. No stitches, just glue. So ... at least once in his life, he had the opportunity to visit the ER for something that a normal kid would.  We are going to stay away from brick walls with odd pipes sticking out of them now.

January 23, 2011

Love at the Park

Yesterday at the park, Azer wrote this on the side walk:


He also wrote, "Thank you for what you do. Really, really, thank you."

Well ... that was just so sweet, wasn't it?


He hasn't thrown up in the past few days. The stools are still pretty lose, but there aren't as many. His appetite is still non-existent, but he's happy and energetic!

January 20, 2011

Flagyl

Yesterday, the docs decided to start him on Flagyl, which is an antibiotic that is supposed to treat bacteria overgrowth in the GI system, or that is as much of it as I understand. I think he's been on this before. Apparently being on Augmentin and Erythromycin, (both antibiotics), can cause problems in the intestines. So, here's hoping for normal stools.

He threw up again this morning, within minutes of waking up. I just don't understand what causes that. He's only had three doses of Flagyl so far, but there are no improvements in how the stool looks. Though he definitely has not been going as frequently as before. Appetite? ummm ...no. There is no appetite. He ate a pizza last night. Yeah, like the whole pizza! Except the pizza was one inch by one inch. And that was about it for dinner.

I am afraid of what the doctors will try next. I just can't help but feeling like we're messing things up worse every time we try something!

January 15, 2011

Worse Than Yesterday?

Yesterday evening, when I thought this was over for the day, the doctor called and asked me if I had given Azer any Prednisone yet. I hadn't. She said they saw a little bit of pneumonia in his lower right lobe, and that steriods might make an infection worse. She said if the antibiotics don't help with his cough, that we might be facing a future admission to the hospital. Wonderful hu....

So, I woke up at 1am last night to give him his erythromycin. Within minutes, he was throwing up again. Only, there was no formula coming out, just mucus. When his feed ended in the morning, there was no vomiting, and his morning stool looked ok, so I thought we were heading towards recovery.

I gave him his second dose of erythromycin before his morning bolus. About an hour later, he had diarrhea. Within a half an hour of that, he had sever abdominal pain and then threw up everywhere. Again, it didn't look like formula, just lots of mucus. Kind of panicking, I called the CF doctor on call. The plan is now to stop the erythromycin until Monday to apparently let his body get "adjusted". He's had a few more diarrhea episodes since then, but no more vomiting. As usual, he says he feels "fine".

January 14, 2011

What A Day...

Today was Azer's appointment with the GI CF specialist. The dieticians and the GI doctor felt that Azer would benefit from  Erythromycin, which is an antibiotic but also works to to move things through the digestive system faster. http://www.medscape.com/viewarticle/448278  This is the goal, apparently. To move the formula and food through faster. Hopefully he will then be more hungry for food, and less full of formula. Unfortunately, I need to give this medication 4 times a day, and one of those doses is about halfway through his night feed. Yay for waking up in the middle of the night.

We are only doing one bolus feed in the morning. The GI doctor explained about how the stomach changes it's "position" when it is full of formula. So, this may be why he is having much more trouble with reflux now. They prescribed liquid Zantac in addition to the Nexium he is already on to try to make it more comfortable for him.

Don't get confused now. He's taking Zantac for reflux and Zyrtec for allergies. Being honest here ... I am never going to get those two straight.

He really has not gained any weight since December, so they said that if his weight doesn't improve, they may put him on a higher calorie formula next month.

His FEV1 in December was 90%, and today the best he could blow was 70%. Yikes. But, they weren't too concerned seeing that it is cold outside, and he has been off of his Flovent for a while now. So, they also prescribed an oral steriod to kind of "hold the tide over" until we get the Flovent, which should be next week. He will also be taking Augmentin (general antibiotic) for 14 days.

After the doctor visit, we went downstairs for X-rays  and labs. He cried a tiny bit when the lady stuck him. :(

video

And here he is demonstrating how he stands for an X-ray. He is holding his breath, which is what they normally do for a pulmonary image.




After spending 5 hours at the hospital, we are all spent and exhausted. I am still working through wrapping my head around ALL of these medications.

January 13, 2011

Again....

He threw up again this morning. It was some of his feed, exactly when his feed ended this morning. I ran it pretty slow. It ran over a period of 10 hours. And still ...

He didn't get his afternoon bolus yesterday because it was straight to the pediatrician. So, he definitely wasn't too full.

The pediatrician was a waste of time, but I knew that. It was mostly to check his weight. Which pretty much is the same since last month. That is very frustrating, with all these extra bolus feeds during the day. Maybe he's not gaining because he's hardly eating any food. Who knows. I sure hope the GI doctor tomorrow has some answers.

January 12, 2011

Vomiting ... Again

He threw up at the end of his feed last night again. Again, it appears to be reflux. He kept trying to swallow hard to keep it down but just couldn't hold it. He kept his morning bolus down, but I've been stressing about it all day.
I made an appointment after school for the pediatrician just for peace of mind. While driving there, I got a call back from the CF clinic. They want him to see the CF GI doctor Friday morning.
Well, I just continued driving to the pediatricians office. I was almost there anyway. His weight is 50 lbs. Same as last month. So not cool.
While lifting his jacket off, the nurse was all, "oh, I didn't know he had a button. He still uses that? I can't believe he still uses that". I guess she assumed he had one as a baby. As if I felt like explaining to her why he has a g-tube.
So, we'll see what the pediatrician says. I feel bad for taking Azer's afternoon away from him just to sit in yet another doctor's office.
Sent formed my iPhone
Visit Azer's CF Website
http://www.azerscfwebsite.com




January 8, 2011

Jogging

For the past few months, we have been religiously walking. After Christmas, we started to add a little bit of running in it. Today was the first day we started an actual plan. I thought it would help his PFT's and maybe help clear his lungs.

So, today was day one of the actual plan we got from Ronnie's site. Thanks Ronnie :)

http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html

We were following week 2 of the plan, but could not run for 2 minutes straight the last 3 times around. One thing I just don't get his why he coughs so hard after running for a consistent minute. I hear mucus coming up, and he tells me he can feel it moving around. But, it's almost like the air irritates his lungs,  because it seems like he just can't stop coughing. I recorded a little bit of it at the end. We did an Albuterol at the end, but he still coughed for about 15 minutes longer. I'm hoping when we get the Flovent next week, it will help ease the irritation, if that's what causes this.


video

Otherwise, he seemed to feel normal when we were finished.

I slowed his feed down last night to help with the reflux. He never eats that much on the weekends because we wake up late-ish. As in, between 7-8am. Someone asked me yesterday what I had planned for the weekend. Funny. It feels like there is just not enough time in the day for meals + bolus feeds. It's a can of formula for breakfast and he's too full to eat anything. At lunch time, he tries to eat a few bites of food, and then a couple hours later, it's another half a can of formula. Then in another two hours it's dinner time, and then it's time for nighttime feeding.  I feel like all I'm doing is injecting stuff into this kid's stomach all the time.

Well, time to stop typing ... time for night time feeding and breathing treatments! Yay! I get to watch Spongebob for a whole hour....

January 7, 2011

Reflux Isn't Cool

Well, last night, the bag of formula for his night feed got a clog in it somewhere, somehow. All I know is, I just couldn't get it to run anymore past 10pm. So I brought in a new bag, and filled it with new formula. It had already been running at least one hour, so he got a little extra formula, but not that much.

Usually his night feeds run until about 3-4am. Because of the clog problem, his feed finished at 6am, which is the usual time we wake up for school. He sat up, and told me he could feel the liquid in his stomach coming up, higher and higher. He took his enzymes and morning medications with water, and he kept drinking water, because usually it helps keep the stuff in his stomach from coming all the way up. It didn't work this morning. I'm not sure how much of his feed he lost, but luckily he was able to get it in all in a trash can, so there were no messes. Yay...

So, I waited an hour, and just before we left for school, I gave him his bolus feed. He was keeping it down fine. While I was pushing the formula through, I noticed his Mic-key button looked loose. From time to time I check to see if the balloon is missing water. So, I laid him down on the floor, and checked, and there was very little water in the balloon. It's a wonder it didn't leak around the stoma. Well, that button is still the original button they put in when he had his G-tube surgery in June. So, I figured it was best to just change it.

So, I told him I'm going to put in a new one. We have discussed it before, so he knew how it was going to be done. I walked out of the room to go get the kit that includes a new button and gauze. When I came back, he was all in tears. He was afraid it was going to  be very painful. I was afraid I wasn't going to do it right, but I tried not to show it. So, I made sure all the water was out of the balloon, grabbed a towel and pulled and it slid out very easily. I think it came out so easy because there was a bunch of mucus around it. I was kind of fascinated at Azer's "breakfast" bubbling out of the stoma. It's kinda cool in a gross way. The new button slid in just as easily, and I inflated the balloon, and flushed it with water to make sure it was in properly.

Azer was said it didn't actually hurt, that it just felt weird. I can't even imagine how that feels. The whole process took less than a minute and we were out the door. Around lunch time, his teacher told me he was showing it off, going, "Look, I got a new one!"

Back to the reflux. He is keeping water with him all day for today. I wish he didn't have to suffer like that. It's bad enough to feel it constantly shooting up, but it's just no fun to throw up.

Oh ... this is the old button. A brand new button is all clear, so I'm guessing the stomach contents change the color of it over time.


And here it is with the balloon inflated. It still inflates, I think it might have had a slow leak.




January 4, 2011

Ugh ...

Well, since school started again, he's been eating a small amount during lunch. At least there is some food going in. And for the past few nights, he's been eating a "normal" dinner. Please note though, that a normal dinner for him is baby sized. Some days it could be several slices of pizza, and other days, literally 4 or 5 bites of food. Thus the need for bolus feedings. I've worked him up to 3/4 of a can in the morning, and 1/2 a can in the afternoon right after school.

In November, when he was having all that congestion that would not go away, the doctor had prescribed Hypertonic saline and Flovent (an inhaler steriod). It cleared his congestion up within a week. I always wondered which medication fixed it, or if it was both of them. Well, it was the Flovent for sure. I know that because I goofed up. The prescription was supposed to be 1 puff, twice a day. Since it wasn't written down somewhere where I could re-read it, I thought it was 2 puffs, twice a day. There were no harmful effects from the double dose, but ... when I called the pharmacy to refill it, it was a month too early. That one inhaler is supposed to last 60 days, not 30. Terrific, right? Since his Flovent ran out, his cough has returned with a vengeance. I think it's the cold, dry air that might be triggering his cough, because when we go outdoors to exercise, he coughs so badly, he can barely even talk.

The doctors seem to have samples of everything else except for Flovent. I can't reorder until next week, so we have been hanging on, thanks to my mistake. We've been doing so much Albuterol in this house, even the cat has wide, open lungs.

We are TRYING to do some jogging everyday to keep his lungs healthy. I've been reading some studies that say that CF people who do aerobic exercises regularly have higher FEV1 results, and lower rate of mortality.

January 1, 2011

A Little Food, A Little Formula

Well, since I started the new bolus feeding (one and a half cans during the day time), he began to eat next to nothing. For a few days, he literally had nothing by mouth. Not even a glass of water. Everything was going into the tube. So, to ease my mind, I called the docs Thursday. The plan is to give a half can in the morning, and a half can in the afternoon. So, I tried that yesterday, and he actually had a few bites during dinner and a glass of milk. So, I'm hoping we can find middle ground, where he gets enough formula to gain weight, but not to the point where he can't enjoy any food.

Who knew it could be so complicated to gain weight? G-tube does not equal simplicity!

Batting off the Tee

video


It gets those muscles working, and any exercise is great lung therapy!