Cystic Fibrosis and Life

CF Clinic... and Awesome PFT's!

2011-11-10T15:32:00.000-06:00

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!

Emotions... argh...

2011-10-16T09:13:00.000-05:00

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.

8 Years...

2011-10-06T16:00:00.000-05:00

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.

CF Clinic

2011-08-11T16:45:00.000-05:00

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!!

Antibiotic Time

2011-08-09T11:56:00.000-05:00

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's Been a Year!

2011-06-21T11:57:00.000-05:00

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.

Great CF Clinic!

2011-05-24T16:27:00.000-05:00

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.

Great Strides 2011!!

2011-05-21T11:56:00.000-05:00

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.

Morning Bolus

2011-05-01T16:07:00.001-05:00

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

New G-button

2011-04-24T12:44:00.000-05:00

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.

Very Cool Weekend!

2011-04-11T19:19:00.000-05:00

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.

Bummer CF Appointment

2011-04-05T16:39:00.000-05:00

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!

Can We Call Ourselves "Runners"?

2011-03-27T15:35:00.000-05:00

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.

Azer Talking about CF

2011-03-25T22:16:00.002-05:00

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

Azer Demonstrating the Treadmill

2011-03-21T17:21:00.001-05:00

I told you he could talk while he runs!

Outrun CF 2011

2011-03-20T11:00:00.000-05:00

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.

Ta-da!

2011-03-18T10:03:00.000-05:00

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).

The New Vest Arrived!

2011-03-05T19:41:00.000-06:00

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!

Great Strides Walk 2011!!

2011-03-04T14:04:00.000-06:00

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!

2011-03-04T13:43:00.000-06:00

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!

Ear infections....

2011-03-01T20:31:00.000-06:00

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.

Decorations & A Poem

2011-02-24T20:42:00.000-06:00

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.

Husband comes home.

Here YOU feed him.

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 husband. 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.

Clinging to husband with sweaty hands.

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.

Husband says to leave him alone. Maybe he’s afraid too?

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.

No Vomiting!

2011-02-23T18:55:00.000-06:00

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.

What's a Wife for?

2011-02-19T08:49:00.000-06:00

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!

CF GI appointment

2011-02-18T14:41:00.000-06:00

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!

Sort of Better?

2011-02-10T17:35:00.000-06:00

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. :)

How to Cure CF

2011-02-06T19:47:00.000-06:00

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

2011-02-06T10:01:00.000-06:00

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!

Worse Coughing

2011-02-05T12:02:00.000-06:00

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.

Sliding In Snow Can Be a Treatment Too!

2011-02-04T17:00:00.000-06:00

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!

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.

Junky Cough = More Treatments

2011-02-03T15:09:00.000-06:00

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.

Week 2!

2011-01-31T18:16:00.000-06:00

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!

Feelin' Good

2011-01-28T19:18:00.000-06:00

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!

Non-CF ER visit

2011-01-24T19:15:00.000-06:00

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.

Love at the Park

2011-01-23T17:37:00.000-06:00

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!

Flagyl

2011-01-20T16:21:00.000-06:00

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!

Worse Than Yesterday?

2011-01-15T15:19:00.000-06:00

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".

What A Day...

2011-01-14T16:15:00.000-06:00

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. :(

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.

Again....

2011-01-13T08:52:00.000-06:00

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.

2011-01-12T16:04:00.001-06:00

Vomiting ... Again

2011-01-12T16:02:00.001-06:00

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

Jogging

2011-01-08T19:31:00.001-06:00

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.

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....

Reflux Isn't Cool

2011-01-07T13:27:00.001-06:00

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.

Ugh ...

2011-01-04T18:24:00.000-06:00

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.

A Little Food, A Little Formula

2011-01-01T14:06:00.001-06:00

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

2011-01-01T13:21:00.000-06:00

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

Merry Christmas and Clinic Visit

2010-12-24T21:11:00.000-06:00

We had a clinic visit yesterday. Pretty close to Christmas hu?

The good news and the bad news. The good news is he blew his very hardest on his PFT with very little coughing and his best FEV1 was 90%. His first blow was 85%. I am very relieved by that. So it seems that the Hypertonic Saline and the Flovent are working.

The bad news: he lost two pounds. He has only been eating a few bites during lunch and dinner. He has been eating so very little. He just has nearly no appetite. I just don't know what to do to fix it. Even with all his favorites, nothing seems to stimulate it. I know he tries so hard to eat what he can. I suppose there is only so much to be expected.

So... the dietitian decided to add this to the plan. A bolus feed of a can of formula for "breakfast", and a half a can during lunch, and then let him eat what he feels like during dinner, and then doing his nightly feed as usual. So, I'm trying to stick to a "feed" schedule even during Christmas vacation.

I want to wish you all a Merry Christmas, and I hope the ones who need to gain weight, gain. And the ones who don't need to gain weight enjoy their meals for the ones who can't.

Doing Treatments

2010-12-07T22:25:00.000-06:00

It's either sleep, the computer or a variety of video games to make the time pass.

Reema's Hero

2010-12-01T21:07:00.000-06:00

You know your kid is a CFer when...

2010-11-30T10:20:00.000-06:00

This morning, Azer said, "I'm the King of Salt!". Only a CF person would get that joke! Between the hypertonic saline and adding salt to his feed bags, he's kind of surrounded by salt.

Clinic Visit and More Antibiotics

2010-11-27T19:22:00.000-06:00

I hope everyone had a great Thanksgiving! Azer ate a whole lot for Thanksgiving, for the first time.

I took him in to clinic last week, because his wet cough was just not getting better. Better to be safe than sorry, I guess. His FEV1 was 79%. He gained 4 lbs and he grew too! The doc prescribed another round of antibiotics, and we have added Hypertonic Saline and Flovent.

Evening treatment is much longer than before. We have another week left of antibiotics. The doctor said to call back in two weeks if his cough is not better. I'm hoping that his PFT will be better after doing all this.

How does he sleep through that?

During the first treatment of Hypertonic Saline, Azer coughed and coughed and coughed. I gave him a quick puff of Albuterol after, because he was hacking so much. He has not coughed with it after that, so I think he's tolerating it now. I noticed mucus is coming out easier for him, and he is starting to spit it out.

My! What good children you are! Reading on your own! (This is a rare event in action, ladies and gentlemen.)

Flexible Reema!

Christmas Time!

Throwing up = CF clinic = Tired and overwhelmed

2010-10-30T09:29:00.000-05:00

Sunday evening, Azer threw up, around the time when his feed ended. He didn't have a fever, and it didn't look like he threw up much, so I thought it was reflux or something. So, I forced us all to get up for school in the morning even though I was just dragging.

Monday night, he threw up a lot. It looked like the entire feed, but of course you can never tell because of how it spreads out. Well, I took his temperature and it was 102.1. No school. He had a CF clinic appointment Tuesday morning, so that was lucky.

Tuesday I was so tired, I cannot even begin to describe it. I always feel like laughing at other people who say, "Oh, I'm so tired, I went to bed late". Another mother recently told me, "Oh boy, I'm so tired, because I chase my two kids around all day, and one of them woke up in the middle of the night." I'm sure she is tired, but, it cannot be even close to the same kind of tired I was Tuesday.

Azer did his PFT's. His first few tries didn't get him much higher than 60% FEV1. I was about to really start flipping out, but he managed to get an 81% which isn't too bad, since he usually baselines around the upper 70's.

He lost a few pounds, he's around 48 lbs. Not terrible, but I don't get how he can loose weight being on the G-tube.

They looked at his previous throat culture, and it was nothing more than staph, but the doctor felt it would be best for Azer if he did another cycle of Tobi. They also prescribed an oral antibiotic we've never tried before.

Before we left, they did a chest X-ray, just in case. I don't know how that will look, but they said he sounded clear, but that doesn't mean much to me. Once, he had pneumonia and they said he sounded clear. I believe this is because the air can move around the infected spots and it "sounds" clear.

So we leave the hospital, and drive to a local pharmacy to fill the prescription for the antibiotic. The pharmacist said they don't carry it. She calls another pharmacy and they might have it. So, I drive over there. Nope, they don't have it. I drive to another pharmacy. They say that this antibiotic doesn't exist in the prescribed strength. Great. So, now it supposedly doesn't even exist? I try two other pharmacies. No such luck.

At this point, I'm so tired, I can't even speak straight. It's now evening, and we haven't had anything to eat yet. If my husband wasn't here to drive at that point, I don't know what I would have done. So, we drive ALL THE WAY back to the hospital, and try the pharmacy there. Yes, they have it. They are the only ones apparently that carry this strange antibiotic. The pharmacist seemed surprised that other pharmacies didn't carry it. It took 40 minutes for them to fill it, but eventually we got it.

By the time we got home, it was about 7:30pm. I just broke down and cried just out of pure exhaustion. I don't know why, but I just couldn't stop crying through the whole evening. The next morning, when I woke up to get the kids ready for school, I looked in the mirror and I looked half-dead.

Well, anyway, I think the antibiotics are working. He hasn't thrown up since we started them. Funny thing: I was reading the label on the bottle of antibiotics. The course is for 15 days, but they only gave me 10 days worth because it expires in 10 days. I have to drive all the way back to the hospital to refill it next week. I laughed out loud at that one, in a sarcastic way.

Thursday, both of the kids had a pediatrician appointment. At the same hospital. Yeah, I'm getting sick and tired of that building. It was a normal well-child appointment. And I never expect the just-out-of-school residency doctors to know that much. But apparently, it seems Azer is spending way too much time on the video games, TV, and computer. In one day, he spends a weeks worth of time watching TV (according to the American Pediatric whatever that tells people how to raise their kids). I looked that doctor in the eyes and I said, what am I supposed to do with him when he's stuck to machines for a couple hours a day? "Well, ma'am, you could sit with him and read books. Or he could read the books himself. His intelligence will be dumbed down by all of these video games." I think my intelligence is being dumbed down by watching Sponge Bob for the past 5 years. But, honestly? Sit there and read books everyday for a few hours a day? In theory, great idea. I didn't know what to say in response so I just smiled back at the doctor and laughed to myself. Of course I read books to my kids every single day. At least 2 or 3 a day. But for a few hours? Umm ... no. Not happening, Dr. Genius.

Reading

2010-10-24T11:42:00.001-05:00

Azer read two chapters out of a Frog and Toad book all by himself,
without me telling him to sit down and read. ð˜

Busy, Busy Month

2010-10-16T16:42:00.000-05:00

This month has been very busy. Reema and Azer have had practice and games on the same days. Between school, sports, doctors appointments and treatments, I feel like I've been on the run ever since school started.

I didn't get a chance last week to blog this but, Azer turned 7 last week!

He took that hat off as soon as he could. Ha ha!

Azer has been practicing baseball with me nearly every day, and three times a week with coaches. No, it doesn't tire him out one bit! I think he is doing really well for his first season of coach-pitch, but I hope we are picked up by a good team in the spring.

He is steadily gaining weight, it seems. We have another CF clinic the week after next, so we'll find out exactly how heavy he is this time. He has been doing very well eating his lunch at school, and seems to be absorbing things really well. He is on the lower dose of Zenpep still.

His cough got better. He still seems to have more of a dry cough than I like to hear, but the wetness went away completely.

Ok, I'm off to eat dinner, and then to another baseball game with Azer!

Gaining More Weight!

2010-09-30T07:42:00.001-05:00

Tuesday morning, Azer's cough just made me feel worried. Like that fear thing popping up, that it just wasn't getting better. So I called the on-call doctor before their offices opened (it's a sure guarantee of getting a hold of a doctor before 4pm). He said to come on in first thing in the morning. So I go rushing around, dropped Reema off at school, and drove straight to the clinic. As soon as I walk in, the nurse told me she ordered a bed, just in case we need it. As in, uh-hu, you might be admitted to the hospital. I'm thinking, yeah, I was prepared for this.

Well, tada! In another month he gained yet another pound. We have a 49ner. We are almost to 50 pounds. He grew and gained, and the doctor was amazed at how great he looked. Azer sounded wheezy, so they sent him to the PFT lab to get an albuterol treatment. His PFT's were 88%, which is better than the 76% last month.

So, we went home with oral antibiotics for 10 days, and oral steriods for 5 days. The steriods have always worked quickly in the past, on improving his coughing. So far, his cough is still wet, but it seems to be clearing. Azer is really happy to have this G-button right now, because the steroids don't taste good at all, and we are pushing it through his G-tube. He is also very happy with the weight gain, and his extra strength he has now. He can pick up his sister! He looks like a big brother now, I think.

Almost done with Tobi

2010-09-26T11:42:00.000-05:00

So, Azer's appetite has been pretty good. Well, he's actually eating food at meals. He looks really good to me. He looks heavier than another little boy his same height and age that he plays with. It makes me feel so happy that I don't see his ribs sticking out like I used to.

It's kind of cold here today in the lower 60's. Ever since Azer has had that cough, it just doesn't seem to go away completely. I'm worried, because the last three PFT's he's had, he's been in the 70's. I'm worried that maybe he has lost lung function, but I hope it can go back up again. But, I feel like he might need some IV antibiotics to really fix it. I just don't get it. He did a whole 2 weeks of Augmentin, orally. And he only has 4 more days of the Tobi to go. This morning, before his breathing treatment, I could actually hear mucus cracking inside his lungs, without even holding my ear to his chest. After the treatment, he sounded clear, and is not coughing. I'm sure his next culture will be free of Psuedomonas as well. So, I just don't understand, if there is no bad bacteria flaring up, why won't his lung function get any higher? There are adults that have PFT's way higher than him.

Besides everything, they are both doing great in school. Azer does not enjoy homework at all, but we're plugging away at it.

He has been enjoying fall baseball. He's been playing 1st base, just like last year, which he loves.

Reema is finally enjoying some sort of sport. This is her at her soccer game. I had to crop out the other kids for privacy purposes, but it makes me smile watching her get in between big, sweaty boys and getting the ball away from them. She is extremely girly, but doesn't seem shy about getting involved with a little tumbling. Of course, she had to ask if her hair clips matched her soccer uniform. *rolls eyes*

Continue with Tobi

2010-09-09T16:50:00.000-05:00

Azer's culture came back clear of Psuedomonas, but his doctor wants Azer to continue with the Tobi. Azer's cough has been improving slowly. It has been very difficult waking up in the middle of the night to flush his tube, and to give enzymes at the end of the feed. Then, we have to wake up extra early because the Tobi takes FOR-EV-ER to finish.

So, to make the most of the day, we wake up early on the weekends too. We went to the lake last week end, swam in the lake, rode bikes, and had a picnic. It was a great escape from the "home hospital". Lately Azer looks a lot taller than his sister. Thank you Lord and G-tube.

Cough... Tobi Again

2010-09-04T07:56:00.000-05:00

So, remember how I said that at clinic on Tuesday, Azer had a bit of a wet cough? Well, yesterday, it scared me a bit because it just sounded terrible. Really junky sounding. I asked the school nurse to listen to him, and she said it sounded like he had good air exchange. I called the doctor, and I thought maybe they would bring him in to look at him, but the he realized that Azer had just started the oral antibiotics on Tuesday, and that it might take more time for them to take effect. His culture still hasn't come back yet as of yesterday. His doctor wanted Azer to start back on the Tobi again. The last time we tried Tobi, Azer had ringing in his ears, but that may have been from the IV tobramycin.

So, we did a Tobi last night, and no problems. Azer said the Tobi makes his mouth taste bad. I just hate it because it takes about 30 minutes to run it, which adds more time onto the treatment time that seems to just run forever sometimes.

I just heard of a new nebulizer called the Trio that can run Tobi in 2 minutes. Maybe I can ask the doctor about it at next visit. It looks like we have to wake up at 5:30 in the morning to get Azer's treatment done in time for school. Fun, fun, fun.

Good Clinic Day

2010-09-01T06:49:00.001-05:00

Yesterday was a routine CF clinic visit. I had to take Azer out of school as soon as we got there. Took us almost an hour to get to the hospital.

He gained a pound and a half, and grew another half a cm! Doctor said his lungs sounded clear, even though Azer has a wet cough. Azer also has a lot of sinus drainage right now, but most of his class has that as well, so it might be a virus. Azer's PFT's were only 76%. I would have liked to see it higher, but he does have the wet cough, so hopefully that is the reason. Doctor wants him on antibiotics for 2 weeks to see if that will help clear him up. They did do a throat culture (Azer calls it the gag test)

I've been sort of worried about CFRD (CF Related Diabetes) lately, as he has been drinking water and peeing constantly. So, they ran a glucose test on his urine, and it was normal. They also drew blood yesterday, so, hopefully that runs normal as well.

They have this new medical device called J-tip. http://www.jtip.com/ It is used for other medications, but we like it as when it is used with Lidocain, it causes the skin to be completely numb in about a second. So, I was hoping they had this in the lab before they drew his blood. It dramatically decreases Azer's anxiety about it. But in the lab, the technician said that they don't use it there, because only a nurse can administer it, because it is a medication. I know they have to follow policies for everyone's safety, but it's always difficult to see Azer crying and nervous over getting blood drawn. It was over in a few seconds, though, and he got a little toy and was ready to move on.

Azer was such a goof in the clinic. He was making jokes, and being really entertaining to all the staff. Our Child Life specialist came in and asked him if he'd like her to come to his class and talk to his class about CF. He's thinking about it. Azer is pretty good at telling other kids about CF, but most of the questions revolve around his G-button.

Azer was telling the different people in clinic yesterday that he really loves his Mic-Key button, and his happy he has it. Also, it's always great to hear from a nurse that we are doing a really great job with him. So, yay for a good clinic!

1st Graders

2010-08-23T18:18:00.000-05:00

Today was the first day of school. Two 1st graders now! Reema was so excited about school all this month. She was counting down the days until school. When I walked them in today, Reema practically ran to her classroom. Azer, while not as enthused about it, was happy that his best friend was in his class, and that there was no homework today. Yeah, they are very different.

Reema turned 6 two days ago! It is that odd time of the year where both of the kiddos are the same age. It only lasts for about a month, but it's nearly impossible to explain to people that while they are both the same age, they are not actually twins.

Rollercoasters

2010-08-07T12:10:00.000-05:00

We went to Six Flags a few days ago. I learned that Reema is completely fearless, and that Azer likes to ride the Teacup (it's not my fault, lol). Complete opposites. I managed to convince him to ride a big, wooden coaster. At the end, he said he would never ride it again. Lol.

I couldn't help but thinking on that ride that it was just like CF. It started out uncertain, what's around the corner? What is it going to be like? Then you go up, and you keep going up, as the doctors give you information, and hope. "Everything is going to be fine, we're in this together" they said. And then for that very first hospital admission and the pills added and treatments and more medicines than I knew existed, I went down, fast. I didn't know how I was going to do it. How was I going to ever look at this baby boy without crying? And then things evened out. I gradually got better. I started to think, oh ... that wasn't so bad! Look! Totally ok! And we're going up.

Then, wait ... what? The hospital again? More medications? Going down! What is this new stuff they want me to do to him now? New treatments, something else you find out that isn't right with your kid.

It never ends. Whenever I read back through the years on this blog, I read the "up" posts, everything is great, he's gaining weight, not coughing. And then the "down" posts, he's coughing, he's throwing up, he's not gaining, not eating, IV's, X-rays. I guess you kind of learn to prepare for the downs, try to anyway. But sometimes they come when I'm not looking. Sometimes I'm afraid that a down is going to pop up when I'm not ready for it.

I guess I like carousels better than roller coasters.

Less Formula Again

2010-08-04T20:40:00.000-05:00

Well, since Azer started the 4 cans, he was barely even eating one meal a day. He just had no appetite (no wonder with a liter of formula a day right...). There is another problem that's been occurring since we've upped the feedings. In the morning after the feedings are done, he experiences reflux more than I've ever seen. He has to drink sips of water to prevent himself from throwing up.

So, last night I decided to put him back down to three cans. And today he had three small snack-ish meals. Yay food! And no reflux in the morning. So, 3 cans = one happy kid.

Only two more weeks until school starts. I feel sad about it, after spending the whole summer having fun with them. Lots and lots and lots of swimming.

More Formula...

2010-07-22T18:09:00.000-05:00

So, remember in the last post, I had tried to increase Azer's enzymes, and it caused him to be "vomiting" over the toilet for like 30 minutes? Well, everytime I try to increase his enzymes, the same thing happens. So, the doctor said that perhaps his weight needs to be higher in order for his body to handle the higher dosage of enzymes, so, they want me to give him 4 cans of formula instead of 3.

It's going ok so far. Sometimes, when we wake up in the morning at the end of the feed, he will feel nauseous, but nothing comes up. He seems to be absorbing the 4 cans better than he did with the 3 cans (odd?).

His appetite ... if that's what you want to call it, has gone into hiding. Well, I suppose I shouldn't expect too much when he's getting almost a liter of formula all night. I haven't been forcing him to eat at all. He'll eat a small amount around dinner time, but that is it. So, we're talking like one slice of pizza, one dollar menu size burger, that amount of food. Not great, but not terrible I guess. He's happy, and has lots of energy, and it looks like he's gaining weight. He's definitely getting taller!

The kids have been swimming almost every day at water parks and swimming pools. Their swimming has improved quite a bit. This year, they can jump of the diving board, and they can do somersaults in the water. They are getting much better at swimming along the bottom of the pool too. I'm proud of both of them.

It's been a great summer so far!

Fireworks on the 4th ... no, not that kind...

2010-07-04T16:31:00.000-05:00

I started giving Azer slightly more enzymes since the clinic visit. It was doctor's orders. Well, he was retching over the toilet for more than 30 minutes this morning. So ... I am cutting back on the enzymes again. Maybe he is just really sensitive to the higher dose of Amylase? Anyway ... he seems perfectly fine now. I'm kind of glad we have the g-tube right now though; he won't get dehydrated as easy.

Here are some photos from a little while ago.

Reema loooooves watermelon.

Acapella

2010-07-02T11:12:00.000-05:00

I think it's making him cough more than the vest does ... which is a good thing!

Good Clinic Day

2010-07-01T15:21:00.001-05:00

So, like others that expect to see great results after getting a g-tube .... tada ... he gained two pounds in about 4 weeks. He grew 2 cm too!

His PFT's were kind of low today, his FEV1 was 75%, which is low for him, but the doctor thinks perhaps it was low because he had some abdominal distension. Otherwise, he overall looks really awesome!

Well, we aren't just happy because of a great clinic day. Our friend from Child Life had just gotten a message that someone donated some Rangers tickets. Guess what lucky kid gets to go to a Rangers game this weekend?

Yep.

We got some other "goodies" too. To quote a joke from a much earlier blog post I made, "You know you've been dealing with CF too long: When your after clinic routine at home looks like a hazmat exercise." That one still makes me laugh.

The respiratory therapist gave us an Acapella today. We can attach a nebulizer cup to it so he can take his Albuterol while doing that.

Today, during clinic, I was asking the nurse where I can get more syringes for flushing his Mickey button. She said I can find them at the drug store. Azer quickly came up with something funny: "The drug store? Oh ... so I take drugs, hu? Lots and lots of drugs! I'm all drugged up!"

Red for Conner Day

2010-06-30T13:59:00.003-05:00

We all are wearing red today, and spent the afternoon making red bracelets that we can wear to remember Conner. (This was a challenge for Reema, as she seems to have a personal commitment to wearing a completely pink wardrobe everyday). Azer thought it was cool, because red is his favorite color too.

The kiddos let a red balloon go today.

Conner Reed Jones

2010-06-25T09:53:00.002-05:00

April 14, 2003 - June 24, 2010

It isn't easy to say this. Conner lost his battle with CF yesterday. All I can say is, it should not be this way, that a child that is nearly the same age as my son passed away.

We will all miss you Conner. You were such a brave, strong guy! Rest easy with God.

Baseball Never Ends

2010-06-24T15:16:00.005-05:00

Yesterday was the last day of baseball camp. Azer had a really great time. His best friend from school was attending the camp too, so they were stuck on each other all 4 days. They played hard for 4 hours each day in the hot sun. When camp was done for the day, they would play catch until we practically dragged them home.

Azer won the 1st place hustle award in baseball camp!

His baseball team also won 1st place ... in case I didn't mention it before. They also got 7th place in the state of Texas. Baseball season went fast for him.

We went to a Rangers came last night, compliments of some friends!

Azer yelled at the players from the 1st to the 9th inning. I can't believe he still has a voice today. He was so into the game, it was incredible. For a 6 year old to pay attention to a game for that length of time is something else. Oh yes ... and the Rangers won their 11th game in a row, so right now it's fun to be cheering on the winning team.

Rally hat time.

Summer is here again

2010-06-18T11:06:00.005-05:00

The day before yesterday was one of those perfect summer days. We went to the park in the morning and played catch for 2 hours underneath tall, green, leafy trees. Looked at bugs, chased squirrels, played in the dirt.
Then, we went home and swam in the pool for about an hour. This was the first time Azer was getting his G-button under the water. He took it slow as he wasn't sure what it would feel like, but after he realized it wouldn't hurt putting his stomach under the water, he was jumping and splashing and swimming. He threw a tennis ball back and forth with me for almost the entire time.
THEN ... they still weren't tired, so we rode bikes in 100 degree weather for about another hour. No signs of exhaustion whatsoever.

Yesterday, I took them to a local water park. It has a few water slides, one of them is completely dark inside, like a long, black, tunnel. Well, we had no trouble with the G-button on those either. A couple kids asked Azer what it was, and he just said, "It's a feeding tube, cuz I don't eat enough food to gain weight." We were there nearly the whole day, and when the park finally closed, the kids were all ... "Awwwww, why are they closing it?".
I've been noticing Azer has had more "muscle" in what he does. It's hard to put my finger on what has changed, but it's something besides weight gain, which is what he was getting from the Scandishakes. Maybe it's the extra protein. I'm not sure. He seems to have just pure strength lately.

And, I just think it sounds weird, I never thought I would ever say something like this but ... gosh, his mic-key button looks so nice! It's a bit sore for him when we clean around it and turn it, but otherwise, he doesn't even remember it's there.

Blessings

2010-06-14T19:03:00.005-05:00

Well, Azer has had a few surprises since he's been home. The mom of one of his friends had some connections with the Rangers. The day after he got home from the hospital, she brought over his very own official photo, autographed by Ian Kinsler. Azer was especially surprised to hear that someone had told Ian Kinsler about him. Azer was beaming from ear to ear thinking about how the Rangers knew about him.

And yesterday, Azer got his other love fulfilled. Cars. A very nice friend of his Kindergarten teacher owns a Corvette. He let Azer and Reema ride in it, and even let them steer. Azer was thrilled, and is still talking about it.

We are also happy to report that Azer is eating food, and seems to be hungrier, especially in the evenings. This is a BIG change, seeing as before G-tube he was rarely hungry at all.

Feedings are still going well. I started him out slow on the new enzymes, Zenpep again. He is supposed to be taking 3 with meals, but I started out on one enzyme with meals instead. The next day I did one and a half, and today I have done 2. He has had no vomiting or retching so far. Depending on what his stools look like, I might just stick with two for now.

Going good so far

2010-06-11T22:07:00.008-05:00

So far, we've had no problems with feedings at night. The day after we came home however, the pump kept telling me "No Feed Out" and he missed his feed for that night. I took the pump, and Azer to the hospital the next day and it never gave that error, so the nurse there was thinking maybe there was some sort of blockage in his stomach. She said sometimes medication can block the flow out, or maybe some piece of food. Anyway...

He has had pretty much no pain whatsoever and has been running, jumping, and doing everything he normally does. He sat during another tournament game today and watched his buddies play, but had a great time with them in the dugout. He is even playing catch. It's great to see him back doing what he loves.

I also finished this video yesterday. Let me know what ya'll think.

Home

2010-06-08T13:37:00.002-05:00

We are home now. It's been an adjustment trying to figure out how to schedule everything. He did fine with the 2 1/2 cans of formula last night, so tonight it will be the three cans, which is as much as the doctor wants to give him for now. I think Azer needs some enzymes at the end of the feed because he is still having floating stools.

We are staying on the Pancrecarb for now, until next week. Then, we will try the Zenpep again. I am really nervous about it. I really hope he doesn't start throwing up again, because that was the whole reason we went to the ER in the first place.

Tomorrow, if it doesn't rain, Azer's baseball team has a championship game right next to the Rangers stadium. I will take him and have him sit in the dug out. I know he really wants to play, but we need to keep him a little less active for another week. It's hard to imagine just 5 days ago, he was having a hard time getting out of bed. Now, it's hard to keep him from running and jumping and climbing!

Getting there

2010-06-05T07:42:00.004-05:00

It looks like we'll probably be going home on Monday! Yay!

Azer had very little pain yesterday. He was walking around normally. Maybe once every few hours, he had some pain, but I think that's because he was moving around so much. His baseball coach came to visit him, and Azer threw a ball back and forth. We also saw Reema yesterday (hi Reema :) It was so good to see her after almost a week! She misses her brother a whole lot.

Azer was constipated yesterday, which is totally normal for having taken morphin. Plus, he hadn't been moving around much for about two days.

It's good to have the old Azer back!

We got the pump we are taking home with us. They delivered it yesterday here in our room, so I've been learning a lot, and learning how to use the pump, and how to hook Azer up. He has been tolerating the overnight feeds so far. They are running for about 10 hours. Last night he received a little more than a whole can of formula. Tonight, they will try a can and a half. So, I guess I will keep increasing the amount at home until we reach 3 cans a night.

The pump can be dropped with no harm from 3 feet in the air, and it can also be washed with soap under running water. It's only like 1 pound, and the battery can run for a whole night without being plugged in, which is pretty cool. They also delivered a IV pole to us, but it's light and easy to push around.

Things are getting much better

2010-06-03T17:09:00.005-05:00

He still has some pain when walking, but he is able to sit in the bed without leaning against the bed. He is sitting straight up and using abdominal muscles. He is also going to the bathroom on his own.

He had pedialyte through his G-tube for a few hours and everything went in fine. He also got his first meal. He ate half a taco on his own, which is pretty good.

He is still taking the old enzymes, Pancrecarb for now. They might be starting the new enzymes tomorrow. They need make sure he is tolerating the enzymes and not vomiting with them before they send him home. So please pray that they can figure his enzymes out.

Here is a picture of his Mic-key button.

There is gauze on the side of it to make sure it doesn't rotate. The gauze can come off in a week. There is no bleeding or leaking so far.

The other white strip on the lower area is over his belly button. It is like a really strong bandaid, replacing the need for stitches. That was where they inserted the camera.

As you can see in the video ... he's doing really well for just having surgery yesterday. :)

Getting better slowly

2010-06-03T07:26:00.001-05:00

Yesterday was pretty rough. He couldn't urinate while sitting in the
bed, so we carried him to the toilet. He seemed to be in a lot of
pain, but he walked back to bed by himself.

Last night was a little rough. He cried off and on through the night.

He is on pain meds, but not morphin. He was able to slowly get out
of bed this morning so we could get him cleaned up. He is very mucusy
today. It hurts him to cough, but a lot is coming up. Hopefully he can
get a breathing treatment soon. He's going to be off the vest for a
while, so it's CPT for a while.

Morphin

2010-06-02T12:20:00.001-05:00

Lol. He's out of it.

He's back in his room

2010-06-02T11:38:00.001-05:00

He made it through great. And he's got a brand new mic-key button. He
is in some pain. He has had three doses of Morphin so far. He's kind
of out it right now but is answerig questions. His oxygen was a little
low so we are making sure he is taking deep breaths.

Done!

2010-06-02T09:52:00.002-05:00

The surgeon came out and said everything went fine. He was able to put
the button in. All stitches will desolve. No food or water for 24
hours. He will have a tube draining his stomach just for today. :)

In surgery

2010-06-02T09:16:00.002-05:00

Well, they wheeled him back a few minutes ago. It should be from 30
minutes to an hour. They gave him sedation medicine, and he was acting
all goofy and silly. He gave me a kiss before they wheeled him through
the double doors.

Wheeled down

2010-06-02T08:10:00.000-05:00

We are wheeled down to the sedation area. Taking blood pressure and
oxygen. He's a little nervous but is not crying and is coloring.

G-Tube maybe tomorrow

2010-06-01T17:44:00.003-05:00

So, after having multiple conversations with an uncountable number of doctors and surgeons, it looks like Azer will most likely be getting his G-tube tomorrow morning. The last doctor I spoke with said she is able to put the button in, instead of having to put in a 12 inch tube first, and then waiting about a month for the button. If they can do it that way, I'm sure Azer will be pretty happy. Regardless, I think Azer is getting better about talking about the G-tube. The Child Life specialist came over again today to talk a little more with Azer. I think since I've been more relaxed talking about the G-tube has helped him relax more about it as well.

Soo ... send prayers and good thoughts our way. I'll write a post as soon as something else happens.

Addition: The actual surgeon walked in a few minutes ago ... here are the details. They will made a hole in his belly button where they will insert a laparoscopic camera. They will made an incision in his side where they will pull the stomach up to the surface, and they will inflate his abdomen with gas so they can see. If everything goes ok, they will put the Mickey button in. If things don't go right, they will make a larger incision and insert the 12 inch tube.

GI study done!

2010-06-01T09:22:00.001-05:00

Well, Azer just got done with his GI study. He laid down on a table
and had a big x-Ray machine over his stomach area. He then was
supposed to drink
large gulps of the barium. But he couldn't drink enough of it, so
unfortunately he had to have an NG tube put in temporarily. They shot
barium down the tube and into his intestines, stomach and esophogas.
The good news is that he does not have SMA syndrome or any other type
of compression. All the "tubing" is where it's supposed to be. We did
see the reflux however, so that's probably why he has such a hard time
eating. He probably doesn't know what it feels like to not have it.

Azer said the NG tube was really nasty. He was gagging and crying
through the whole time. He says the back of his throat hurts a little.
After they pulled it out, he said he's hungry. I'm going to order food
now!

GI Study

2010-06-01T08:13:00.000-05:00

Well, per doctor's order, Azer has had nothing to eat or drink since 4
this morning. I guess they want him to have an empty stomach. If
everything looks good, he will probably be getting the G-tube on
Wednesday. Azer says he feels angry about it, because he doesn't think
he needs the tube. He'd prefer to just keep drinking milkshakes. The
GI study is scheduled in about 20 more minutes. But, sometimes things
get delayed. I hope not though, Azer says he is hungry.

Yesterday he would say he was hungry before meals, but he didn't have
very much to eat.

No Vomiting

2010-05-31T15:05:00.005-05:00

Well, Azer still has not been having any vomiting. Today the CF doctor came in and talked more about possible SMA syndrome. Then, the GI doctors came in a few times and their theory is that it's possibly enzyme intolerance. So, we'll find out tomorrow who is right. Tomorrow they are doing a GI-study. He will drink some liquid containing calcium, and then he will go to radiology throughout the day so they can see how things are moving through his GI system.

It looks like Azer may possibly be getting the G-tube on Wednesday. The GI doctors seem to be ready to get that ball rolling, so we'll see what happens. Regardless of whether Azer gets the G-tube or not, we still need to find some enzymes that will work for him. He is still taking Pancrecarb, and the supply will not last forever, so hopefully they can find an enzyme that will not cause vomiting in him. Darn FDA...

Azer has been saying he's hungry today, but hasn't eaten much during meals. We have not been giving him any milkshakes, or Scandishakes, and have been letting him eat as he feels. No pressure. I guess that's how it should be. A Child Life specialist came in and brought a doll and talked about the G-tube with him so he could understand it. He got to touch and feel the tube and the button, and different catheters. She was very honest and down to his level, and told him that yes, it will be sore for a few days, but that in the long run, this will be a great thing for him. So, it sounds like after he gets the G-tube, he'll have to stay out of the pool for a few weeks, but after, he should be able to play ball and go swimming, and be a kid again.

Just waiting

2010-05-30T18:13:00.000-05:00

Well, we just saw the Doctor who said that we will play with his
enzyme dosage here and see if we can stop the intermittent vomiting.
She still has a hunch that it's something related to some artery
compression because he is apprently absorbing better on the zenpep
enzymes.

2010-05-30T17:45:00.001-05:00

In the hospital

2010-05-30T12:09:00.002-05:00

Well, Azer woke up this morning needing to throw up. He threw up, and dry heaved for about a half an hour. He drank some water after, but he threw that up immediately. So, after that he seemed
fine, so I gave him a milkshake to see how that went. He threw that up within minutes. So, I knew he was probably not going to get to play his tournament. I called the CF doctor, and she said to bring him in. So we are in the ER department right now. We might be looking at admission, so Reema is staying with friends for now.

Azer's stool this morning looked pale-ish and floated, which happens a lot on Pancrecarb. I was expecting to see his vomiting getting better. Azer is pretty angry that he couldn't play his baseball game today.

I'm hoping this time we can go ahead and get the G-tube put in. Since he has started the zenpep, his appetite is nearly non-existant. It's been a huge struggle to get him to eat. Last week in the ER he was around 21 kilos, at pediatrians he was 20 kilos. Today when they weighed him, he is 19.8 kilos. It is scary to see the weight drop like that. I mean, we have all worked so hard on keepin his weight up, and he had gained pretty good weight on these Scandishakes and milkshakes. It's almost like all that progress is gone.

Well, I'll post later when I find out results of the blood test and x-Ray. He is on iv fluids right now. Send good thoughts our way!

Threw up.... again

2010-05-29T21:11:00.004-05:00

Azer had two tournament baseball games for today. He was excited last night about it. So, this morning, I woke up early so I could get Azer drinking his morning milkshake, and to hope that he could get it down before he had to start running around in the hot sun. Well, things didn't exactly go as planned. He took his meds and had a few sips of the Scandishake, and then had to run into the kitchen and threw up in the sink. He seemed perfectly fine after he was done throwing up. Plenty of energy, no fever. Everything was fine, just like after he threw up yesterday.
I was so frustrated. I mean, I was wondering how the heck was he going to play baseball, basically all day, on an empty stomach with practically nothing in it? I was really emotional and stressed. So, I called the CF doctor on call. She was great. She said as long as he stays hydrated, and gets salt with each thing he drinks, that he should be fine playing baseball. So, I gave Azer a Caprisun, and sprinkled some salt on his tongue, and he kept it down fine.

Azer was fine during the first game (they lost miserably though ... the team we were playing against was used to playing tournaments). I kept Azer wet, and kept giving him salt after each half-inning. After the game, Azer had lunch with a team mate and his coach. He actually ate food, which is amazing.

We lost the second game too, but luckily Azer wasn't too disappointed. He looked pretty lively on the way home. When we got into the door, he looked tired and like something wasn't quite settled with him. Yep ... he ran to the bathroom and threw up again. I called the CF doctor again right away. After talking with her for a while, she was thinking Azer had something called SMA syndrome. She said it wasn't serious, and that it was something normal. I don't really understand it completely. When I googled it, it looked pretty serious to me. She said to put Azer temporarily back onto his old enzymes, and see if the vomiting goes away. If it does, then we'll have to adjust his new enzymes somehow. The doctor said she really wasn't concerned with how Azer sounded. She said he sounds alright, and to just try to experiment with the enzymes and see if things will change through the weekend.

Azer has another game tomorrow. Basically, his team plays until they loose.

So, off I go to "experiment" on my child.

Threw up again

2010-05-28T20:13:00.000-05:00

Well, I thought everything was going fine with his enzymes, until Azer threw up today a little while after he came home from school. It seemed like a lot. I called the CF doctor, and the nurse called back and said that as long as he is acting normal, just try to keep an eye on it through the weekend. I just have a feeling it might have something to do with his new enzymes. Hopefully it is just going to take a couple days for his body to get used to them.

Azer joined a team today that will play in a t-ball tournament tomorrow. He will basically be outdoors all day, so hopefully I can keep him well hydrated and feeling good.

New Enzymes and Last Baseball Game!

2010-05-26T23:08:00.003-05:00

Today is Azer's first full day on the new enzymes, Zenpep. So far, his bowel movements sink, and they look pretty normal, and there is no gas or bloating. The enzymes come in a glass bottle... kind of interesting.

I've still been waking up at 3am to give him his antibiotics. The spots on his feet and hands seem to be going away. And no more fevers!

Today was Azer's last game. His team won today's game, and we got first place!

There are only two days left of school!

Yes...

2010-05-25T16:11:00.005-05:00

So, yes he does have foot, mouth and hand disease, but apparently he was only contagious when they have a fever, which has been gone since Friday. So, he can go to his last few days of school.

The culture from the ER came back positive for Pseudomonas, so I'm waiting to hear back from the CF doctor to find out if they want to treat it.

Well, here's what his feet look like. His hands only have a few spots, but on his hands they look more like little pimples. On his feet, it looks like there are spots deep under the skin. Doctor says they should go away within a week.

Oh yeah, and the pediatrician seemed to be concerned that Azer was on Cipro, the antibiotic. I felt like I was trying to convince him that he should probably finish the 10 day course. *sigh* I always feel like I'm trying to explain things to the pediatric department.

Hands, Feet, Mouth ... what?

2010-05-25T11:56:00.003-05:00

Azer hasn't thrown up since that night in the ER. It took about a day before he began to drink his milkshakes normally though. He missed practice on Friday, and missed his first baseball game ever on Saturday. He still had a headache that day, and he just wasn't drinking his milkshake. I couldn't have him running around in the heat on an empty stomach.

In order to give him his antibiotics at the right time, and not to close to his Prevacid, I've had to give them at 3pm and 3am. That's the best thing I could figure out.

So, yesterday morning, while I was getting Azer ready for school, he said his feet hurt a little. Well, I took a look and he has red spots on his feet ... kind of under the skin. That's weird, I thought. I took a look at his hands, and they have small, pimple type bumps on them. And his tongue is coated white, with some red splotches. The school nurse said it looked like Hand, Mouth, and Foot disease. So lovely. I called the pediatrician, and they thought it would be good if we brought him down there ... again. Apparently, it's very contagious, but the nurse from the pediatrician's office said she thinks it's only contagious while the child has a fever. So, perhaps when he was having fevers last week it was from this?

Reema had a fever and headache yesterday, and was sent home from school in the afternoon. She is fine today, though. So, in about an hour, we'll head over to the Children's Hospital ... again...

ER

2010-05-21T14:59:00.004-05:00

Yesterday evening, after the game, Azer's fever started to spike up to 104. He vomited later on in the evening, and his headache was pretty painful. I gave him another dose of Motrin, and then we decided to take him to the ER. We were there until 6:30 in the morning, he threw up a few times there as well, and seemed to be having trouble trying to keep liquids and tylenol down. They swabbed him to test for strep, and it was negative. The video is of Azer getting swabbed.
Eventually, his stomach settled, and they sent us home with some prescriptions. They don't really know exactly why he has a fever and is ill. One prescription for nausea, and another prescription for Cipro. He's never been on that one before. I had a hard time finding a pharmacy that would fill the prescription because it seems most pharmacies don't carry Cipro. I finally got the prescription filled a few hours ago. I was reading the bottle and it says not to give within 6 hours of an antacid, which he is currently taking. The pharmacist says to space the meds, but I'm not sure how to space it so he can eat at a normal time. *sigh*

Husband was great in the ER at trying to keep all of us in a good mood. I felt bad for the kids (and myself, gotta be truthful), after being awake for about 24 hours. I hate cleaning up vomit. Really. I guess I'm just really grossed out by it. Other people just clean it up, and I practically stand there waving my arms in the air as the child vomits.

Ok. I need to eat something, and sleep.

Headache before Baseball

2010-05-20T20:54:00.005-05:00

Well, when Azer came home from school, his dad said he felt hot. And indeed he was. He started out with a fever of 100.3 and went up to 102. Azer had a baseball game in about 1 and a half hours, and he was crying and feeling miserable. He said he had a headache. This is the same thing that happened before his last ear infections. I finally heard back from the CF nurse after calling several times. She said it could be a virus, or an ear infection starting to happen. I gave Azer ibuprofen and Tylenol, I flushed his sinuses twice, and he was doing a great job convincing me that he could play.

Azer played baseball very well tonight too. He makes a great first baseman. I can't believe his baseball season is almost over already. T-ball runs for only a few months, it seems to just fly by. We have had an amazing coach this year. We are actually in first place in our division (so far)! He is amazing with the kids and Azer just adores him. Oh yeah, and on Tuesday, when practicing batting at the tee, the tip of the tee broke off. Heh ... it might have already had a crack in it, but Azer believes he swung that hard that it just plain broke.

So during his meal tonight, Azer was getting another headache. I think the medication was wearing off. He ate a few bites, which is pretty good for him, and he drank his milkshake. Speaking of which, he is always full of milkshakes, seeing as he gets about 4 or 5 of them a day. But, he does a fantastic job of pushing himself to drink them. Especially when he is not at home. It seems at home, he takes longer to drink them. I think maybe it's because we are always hovering over him. He's gotten so independent this year. Really, they both have. They have become amazingly smart this school year. Only one more week left of school. Can you believe it?

Anyway, hopefully tomorrow Azer will feel alright.

For Conner

2010-05-20T10:00:00.005-05:00

Conner's story has touched home with me, because he is so close to Azer's age. He has Cystic Fibrosis, and also has Prune Belly Syndrome which basically causes you to have no abdominal muscles, and smaller than normal lungs. That combined with CF has not been easy for Conner.

This past year, Conner's health has declined rapidly. As of just a few weeks ago, his mother has had the painful experience of dealing with hospice, and now she is having to plan for his funeral, as it appears Conner will not have much time left in this world.

This is Conner's blog.
http://notsobrightandshiny.blogspot.com/

Friends of Conner have made this website to help his family pay for the funeral that seems to be coming very quickly. Please consider donating something to help their family. If you have a child with CF, or are affected by CF, you know how expensive the care can be.

http://connerjones.chipin.com/the-conner-jones-fund

Ear infections for Mother's Day!??

2010-05-09T11:17:00.004-05:00

On Friday, the kids had Field Day at school, and Azer and Reema spent a few hours in the sun running around and having a great time.

That evening, Azer had baseball practice. I kind of noticed he looked just barely not quite right. I wasn't sure if maybe it was from being out the sun all day. That night, he was up literally all night with a severe headache and his ears hurt.

So yesterday morning, he woke up feeling horrible. He was crying and his head hurt really bad. But, he had a baseball game, and he spent the whole morning trying to convince me that he was fine. I didn't have the heart to say "no" to him, since he was so adamant about going to the game.

So, I gave him a milkshake, and he seemed fine with it. When I was helping him put his uniform on, I kept looking at him and really was considering keeping him home, but he noticed I was observing him closely, and he forced a big grin on his face. Hmm...

When the team was warming up, Azer came to me a few times in tears and told me that there were "bubbles" in his ears. Yep ... ear infections. He looked horrible. I asked him if he wanted to go home, or if he wanted to sit and watch the other boys play. No, he absolutely had to play in the game. He played pitcher and first base, and got a few kids out, fever and all. When he was up to bat, he hit that ball over the kids heads. Amazing, really. And he practically cried through the whole game.

So, after I took him home, I waited a few hours to see if he would improve. I had already given him more Ibuprofen than I should have. I called the CF doc on call, and he recommended taking him to the ER. Fun, fun.

The ER doctor said he has two ear infections, and that the ear drums looked angry and ready to burst. One of the ear drums ruptured as we were leaving, but I think it relieved the pain, because there was just so much build up of fluid. Azer got sent home with oral antibiotics for 10 days. He woke up once last night with ear pain, but this morning, he bounced out of bed with no symptoms, pain, or fever. Amazing, hu?

Enzyme changes ... oh dear

2010-05-03T20:20:00.002-05:00

http://www.cff.org/aboutCFFoundation/NewsEvents/04-28-FDA-Deadline-Affects-Availability-of-Enzymes.cfm

So, it seems that Pancrecarb, the enzyme Azer has been taking since the beginning, is not going to be produced. I don't know if it's permanently, or just for the time being. But, I called the CF clinic, and the nurse confirmed it. She said when Azer needs a refill on enzymes, they will be putting him on a different kind. I'm so worried about it. His digestion and absorption is so difficult to get right. Either he's constipated, or he's not absorbing at all. I just hope that the new enzymes work as well as the Pancrecarb has always seemed to work.

No to Pseudo

2010-04-29T22:41:00.004-05:00

The nurse called yesterday to let me know what had shown up on the throat culture from last week. There was no Pseudomonas on it, or MRSA. Just Staph. She said just because that it didn't show up on the culture doesn't mean that it doesn't exist in his lungs anymore. That some of the bacteria can be deeper in the lungs. But, they don't really treat it unless he is having symptoms.

Azer was coughing a lot yesterday for some reason. Not a wet cough, just a dry, hacking type of cough. I haven't really heard him cough today since he's been home from school, so I'm not sure why that happened.

The kids had fun today playing at the park until late into the evening. Azer was tired by the time he was done with dinner. He asked me if he really had to do his evening breathing treatments. I told him if we don't keep his lungs healthy now, they might not be healthy for very long. I hate to be blunt with him, but sometimes I don't know any other way to put it.

He still is not eating a whole lot of food, but is still drinking his milkshakes. I keep thinking about how he is 47% in BMI and how amazing that number is. I just want so badly to keep it that way.

More Needs to be Done

2010-04-26T11:51:00.003-05:00

So, the walk was on Friday. People we knew weren't able to to make it. Friday evening is a busy time for people I guess. But we did raise over $200. Thanks for donating. You all are awesome.

The walk was 4 miles, but most people there only did about 1 or 2. But the kids and I completed the four mile walk.

And they still had a ton of energy at the end too. They even ran for some of it.

The next walk is in June, but it is at 8am, and it's on a Sunday. I'm not sure if people are willing to wake up early just to get over to Arlington to walk.

I am going to start making t-shirts, either to try to get a "team" together for the next walk, or just for people to wear to spread awareness about CF. I'm not sure how much to ask for them, or if I even should, but I think I need to be more of a sales person about raising money for CF.

If anyone has ideas, let me know. I'm open to suggestions.