December 22, 2016

The Day After Surgery

Yesterday started out pretty tough. He woke up in the middle of the night panting and unable to breathe easily. Some albuterol helped a little, but it seems that all the bleeding from his sinuses ended up in his lungs. At first, he sounded so bad, and was having such a hard time breathing, I was tempted to go ahead and bring him back to the hospital. We put in a lot of work yesterday, doing hand CPT every couple hours. It started out pretty rough. Coughing and laying down hurt his nasal area. Most of the day, he was coughing up a lot of old blood and mucus. Luckily, his nose wasn't bleeding much at all, so we were able to do his normal nebulizer medicines.

Because of those splints stitched inside to his septum, nasal rinses have been challenging, and painful. The doctor told us that if we didn't keep trying to do the rinses, the blood in his sinuses could scab over and dry and cause scarring. It took most of the day to use one bottle up, but it did flush a lot out.

He ate very little, so we did extra formula boluses to supplement the calories he wasn't eating. He felt nauseous after most boluses so he took it easy for most of the day.

Later on in the afternoon, the mucus he was coughing up was becoming less bloody, and more clear. He definitely was starting to feel more like himself. He slept sitting more upright last night, so while this is more comfortable for his head, all the drainage ends up in his lungs. So, we plan to continue with frequent hand CPT sessions for the next week.

December 20, 2016

Sinus Surgery

A Pre-op nurse called yesterday and let us know when and where to register and check in. We put in plenty of extra breathing treatments to prepare for the surgery. They also let us know they might be admitting him and keeping him overnight after the surgery.

As soon as we arrived at the Surgery Clinic, they put us in a room right away. The team was very upbeat, and kept the joke running about Azer getting a brain transplant. He was given lidocane using a  J-tip  before they put his IV in. A little while later, they gave him Versed through his IV, and he got very relaxed and giggly. The doctor said to expect the surgery to last about 2-3 hours. (I was surprised it was so long)

About an hour into the surgery, we were called into a Consultation room with the doctor. 

He apologized and said not to worry. He had already cleared some sinus cavities on one side, but was having great difficulty accessing the left side. Like many people, Azer has a deviated septum. However, in Azer's case, the inflammation, mucus, and polyps had further pushed the septum so far, that he probably hasn't been able to breath from that side for a long time. The doctor needed our signature and permission to continue with the surgery and to cut and file down the septum. The doctor put rubber splints into each nostril and secured them with a stitch.

The surgery was indeed close to three hours. When it was over, we were able to go be with Azer during his recovery. 

It took about an hour in recovery for him to be released and they let us take him home. They felt like he was breathing well enough to send him home. We were sent home with steroids and precautionary antibiotics. Tomorrow, we will start Neti pot sinus rinses. 

His breathing treatment tonight was shorter than usual. Coughing is very painful for him right now. His lungs sound very noisy. It is always shocking at how quickly his lungs and become congested. I tried to do some CPT for him while he did his best with his nebulizer. 

He is coughing up some blood, likely from drainage from his sinuses. When he sits up, he soaks through gauze pretty quickly. Obviously, his face is sore to the touch. Controlling all this bleeding and pain is challenging. Hopefully, this will get better quickly. 

November 10, 2016


So, Azer's sense of smell has still not returned. He says he can only smell Axe spray, and sometimes unpleasant odors. We were finally able to get an appointment with ENT. Our CF nurse ended up having to contact the manager of the ENT clinic after repeated requests for a consult.

When we met with the ENT doctor, he said usually his first step with sinus issues is to put the patient on an antibiotic. I asked if he could ask our CF doctors about it first, since Azer hasn't needed antibiotics for quite a while now. He agreed, and later on in our conversation, he decided that it probably wouldn't improve his sense of smell. We were sent down to get a CT scan about an hour later. The doctor told us he would compare the scan from today with CT scans Azer has had in the past: one in 2013, and one last year.

So, the doctor called this afternoon, and the CT scan from today was significantly worse than it was previously. He said it can be difficult to discern polyps on the scan, but he could make out definitive polyps and they are blocking quite a bit of his sinuses, especially on the right side. The doctor said the best thing that could be done to improve Azer's quality of life is to have sinus surgery to remove the polyps and to open up the sinuses. He said that it should improve his sense of smell, but it may never be quite as it was before. He also mentioned that this should be considered like "mowing the lawn"; that the polyps will return, and Azer will need periodic surgery to remove them. The doctor said usually the patient can go home the same day, but he will be coordinating admission with the CF clinic, to decide how long they want him admitted, and whether he will be on antibiotics during his stay.

October 6, 2016

13 Years Old

I am now officially the mother of a teenager! What better way to document 13 years of life than through pictures?

Happy Birthday Teenager!

October 5, 2016

Clinic Visit

So, the other day, I happened to be sitting next to Azer during his nebulizers. I noticed his "Bubbles the Fish" mask wasn't fitting on his face very well anymore. He actually outgrew Bubbles.

Aww... couldn't resist.

So, prior to our clinic visit, he has been using the mouth piece with the Pari cup instead. The Hyper-Sal has been causing him to cough quite a bit during his treatments, like when he first started using it.  He seems to have been sounding more junky because of this. Both of us were dreading what his PFT's would look like. Even the respritory therapist wasn't expecting very good numbers based on how his cough sounded when he was preparing to blow.

His first blow was 89%. His highest FEV1 was 93%. That has been all he's talked about since yesterday. He feels very motivated and encouraged to continue to work harder and get higher numbers! 

He weighed in at 116 lbs yesterday. He is now nearly 95 percentile in weight. Wow... His height did not improve, however. So, we will talk with the GI doctor about it next visit.

The doctor was very impressed in how he sounded and was feeling, especially because this is usually the worst allergy season for him. He mentioned to her that during and after athletics at school, he feels like his chest is heavy, as though something was pressing down on it. She thinks this is mainly due to the asthmatic component, and not necessarily the "CF". She then explained to Azer in a easy to understand way why he needs two inhaled steroids and what their specific purposes were. He also discussed with her his bowel troubles he's been having, and they figured out he needs to increase his enzyme dosage at a few meals based on how much fat he is consuming. It feels great to take the back seat at times, and let him take the reigns!

After clinic, we went over to the main building to do his yearly Scoliosis X-ray.

Big Tex was on the way haha.

On the way into the X-ray room, the tech asked Azer to verify his date of birth. The tech had the same birth date as Azer! What are the odds. The doctor saw the results and messaged me within the same day. I thought that was pretty incredible. She said that his scoliosis is still very mild and is unchanged from last time. She said it hasn't progressed with his growth and is stable.

So, all around, fantastic news!

July 20, 2016


Yesterday was the appointment where they did all the annuals: annual bloodwork, X-rays, fasting glucose test, bone density, and a deep review of his care. We were there for about 5 hours. While exhausting, it is necessary.

So, he had been fasting since midnight. It seemed to take quite a while to get into the labs, so we went to X-rays first. After, they did a blood draw for his fasting blood sugar and many other levels, including vitamins.

Shortly after we got into our clinic room, he was instructed to drink several cups of the glucose drink.

His weight was 108, which is the same as last time. I told the GI doctor, it has been difficult to withhold the 5th can of formula, but his BMI went down a little, so she's happy with where it is. He grew an inch since February. The GI doctor wanted to know a little more about our Endocrinology visit. She said that the Dr. we saw is on the more conservative side of growth hormones. Our GI doctor said that in about 6 months, if he's still growing slowly, and not catching back up with his genetic goal, we can see another endocrinologist that is starting to take over more of the CF kids.

His G-button has been feeling tight - again! - so a few weeks ago I had to take some water out of the balloon. This is what the balloon looks like. This gave him a little more space between the button and the stomach wall. Since then, it has been feeling better, but the skin around the stoma has been very dry and itchy. They gave us what is essentially diaper rash ointment (zinc ointment) and some special gauze to use to protect his skin when he's swimming. They said perhaps the chlorine in the water is irritating it.

Since he's gained weight, his stools have been more fatty. When people with CF gain weight, they need a stronger dosage of enzymes, so we can increase his enzyme dosage for large meal times to see if his stools improve.

He only blew a 85% on his PFT's. His chest X-ray was improved since last time. Even though his X-ray looks good to the Drs, it still makes me sad to read the radiologists report: that there is wall thickening and bronchiectasis permanently in his lungs. It seems that lately, there is plugging in the same places that just doesn't go away.

The pulmonologist showed Azer what his X-ray looked like before and now and he was able to see how there wasn't as much cloudiness as there used to be. She listened to him, and while he sounded clear, she made him blow hard a few times, and she heard some wheezing. She thinks that his lower PFT's might be due to his asthmatic components, so she wants to add an extra inhaled steroid to his treatments to see if his breathing improves.
Two hours later, they retested his blood sugar. They now do this two ways, one by the prick of the finger, and the second sample is taken from his arm which is sent down to the lab and is considered more accurate. The technician had tried digging around at his veins twice and couldn't get any blood. The GI doctor asked Azer if was possibly dehydrated. He was... She recommended that he over-hydrate the day before labs.
Nearly every doctor, nurse, and medical student that came in stressed to him the importance of keeping his sodium intake high during the summer. The pulmonologist told Azer how she has had to admit other people with seizures because of low sodium. While he didn't have muscle cramps this time, he did experience some about a week later, and they were very painful. When he doesn't drink a sufficient about of gatorade during the day, we run it through his G-tube, and he walks around with it in a backpack for a few hours.
It has been about a year since his last scoliosos X-ray, so the doctor put in another order for it to get before we left. When we tried to check in for the second X-ray of the day, we were told they only did it later in the evening. By then, we had already been there for 5 hours, and we were exhausted and hungry, so we decided to come back for those another day!

Since I was there, I was able to ask the pulmonologist more about the bone density test results. She said that, while it does appear he is on the lower end of the scale, they don't know yet if this is considered normal for a person with CF. They are still collaborating with other clinics for their data. This is a relatively new test they are doing, since they have noticed that since people with CF are getting older, they are having to address osteopenia and osteoporosis earlier. The dietitian came in and recommended that if his vitamin D levels are below 40, they will increase his dosage. They said he is getting more than enough calcium from his formula. The GI doctor noted that he is very active already and with his running, it should be enough exercise to maintain bone density. She said that repetitive exercises such as running and jumping help build and maintain bone density. She also said that the clinic is working on getting a physical therapist on to the staff to help addressing exercise.

June 28, 2016

Heat Exhaustion And CF

This past weekend, Azer's team had a tournament. On Saturday, they had two games. He pitched several innings. He felt alright at the end of the day, but hadn't drank enough fluids and felt very tired.

Sunday, they played one game. He had started his morning bolus a little later than usual because he slept a little later. By the time he needed to start warming up on the field, he said his stomach still felt full, and he sat in the dugout to avoid vomiting. He had pitched a little while, and drank mostly water in the dugout between innings.

That evening at home, he still hadn't drank much more. We started to run some Gatorade through his G-tube, and he vomited it all up. He said he felt very tired. He ate a small amount of food for dinner. In the middle of the night, he ended up vomiting up his night feed. He said he was still feeling physically exhausted.

After communicating with the CF clinic, we decided to skip a bolus feed, and run Gatorade through his G-tube throughout the day.

We have been in the ER before due to dehydration. Apparently, in Cystic Fibrosis you can have heat exhaustion caused by low sodium in the blood. So, by drinking water in addition to aggressively sweating in hot weather, the salt in the body is not being replaced and this can cause hyponatraemia, which is having a low sodium level in the blood.

June 10, 2016

New Mic-key Button Size - Again!

So, for about a month, Azer continued to have pain around his stoma. He said it was in the muscles around it. The last time he felt like this, we had to put in a larger sized Mic-key button. We managed to battle the infection of the stoma itself with the oral antibiotics, and special gauze they gave us. However, the pain remained when he coughed, and when his stomach was not completely full. In May, the ostomy nurse didn't think he needed a bigger size. I could tell he was getting tired of dealing with this pain, so we were able to get a quick clinic visit with the ostomy nurse again.

Azer explained to her how it felt, even though the button could still turn freely. She left to go find the next size up, but it was unavailable, and the one she did have was a whole half size longer. She agreed to put it in him, and see if we have any leakage.

Within seconds, he was pain-free. The whole drive home, he was relaxed and kept commenting on how much better it felt. I guess he didn't realize how much discomfort he was in until it was relieved!

This is what happens when he sits down lol
Bigger Size

Last week, he ended up coming down with a virus that came with a fever and cough. He was feeling pretty bad. Luckily it was short lived, but as it frequently happens, the virus leaves, but the congestion stays. We have been doing short sessions of manual CPT 4-5 times a day to try to help him clear the extra mucus. It's hard to say at this point if he won't need antibiotics soon, but it definitely helps him breathe better.

May 29, 2016

Thank you!!!

Dear Donors and walkers for “Joggers for Azer”,

Thank you so much for what you have done. This is the first time ever that we have raised over $600 and it's all thanks to all of you who contributed. Thank You to everybody who showed up to the 2016 CF walk this year to support me and many other people with this rare and genetic disease. We could not have done it without everybody's help. Thank you so much for all you support and help.

Sincerely, Azer Russell

May 26, 2016

Endocrinology Appointment and Results

The endocrinology appointment went pretty fast. We talked about some of the concerns over him gaining weight, but not growing in height. We reviewed the GI medications he's on. I was also able to ask about the bone density test he had a few months ago. It was on the lower end in the range of acceptable. She did a physical exam, and concluded that based on her observation, his hormones are likely normal. Just in case, we were sent down for X-rays and labs. 

She tested for many different hormones that help growth and puberty.

Our number or "place in line" at labs. Azer noted it was his lucky number. 

In X-ray, he had a Bone Age scan, which looks at how his bone age matches up with his actual age. The result was it was about two deviations from his actual age, which apparently is still within the normal range. 

All of his hormones came back as normal for his age and stage in puberty. She noted where he was on the growth chart, and it looks like his height is finally starting to creep upwards. She said if he continues to follow this trend, he should reach his genetic height without the need for growth hormones. 

They also did a random glucose test. In the past, his fasting glucose has been normal, but his random glucose tests have been a little high. So, for the next month, they want us to test his blood sugar twice a day, twice a week. This seems so sudden. Luckily, I was able to go back to the clinic and get hands on instructions from one of the awesome nurses there. They told me to let them know right away if his blood sugar is too high. I am hoping he doesn't have CFRD, but if he does, I am grateful that we have the opportunity to treat it soon. At the same time, every time something new is added, it always feels like a huge burden for a while until we get used to it. So, I am still hoping this is only for a month!

May 13, 2016

G-button Infection

So, Azer's lung culture came back as abundant Staph that grew two colonies. Despite this and the not so great chest X-ray, our pulmonologist wants to hold off on antibiotics since Staph is so common, and if we over-treat it, it could become resistant to antibiotics eventually.

Despite using gauze around his G-button and keeping his stoma very clean, it has continued to be wet, red, warm, painful, and leak pus. The GI doctor has concluded that it is infected and has prescribed antibiotics to treat it. They also are trying to get a pharmacy to send us some special dressing that will promote healing. We don't know why his stoma got infected, but apparently it's not that uncommon.

Sorry for the gross picture, but when I searched for a mildly infected G-tube stoma, I couldn't find a whole lot. The one I did find was very helpful. Usually, he doesn't have any pink tissue around it, and there is no discharge. 

May 3, 2016

Clinic Day

"Well, I never thought I would say this" said our GI doctor, "but we need to back off of the formula a little...." Azer weighed in at 108 lbs today. She even said he could stand to lose a few pounds without harm. And while his weight continues to go straight up on the chart, his height is still not climbing back to his genetic potential. In a few weeks, we will see an Endocrinologist to see if he has a growth problem, and a need for growth hormones. The GI doctor said that if that's the path we chose, it will mean daily shot injections at home. While there is no direct health benefit for him to grow taller, it does mean better quality of life.

His stoma was a bit irritated, so an Ostomy nurse looked at it. His G-button is still fitting well, but she said if he rotates it throughout the day, and use some gauze under it, it should heal fine.

His Fev1 was 84%. His chest X-ray from today looked cloudier than the last time. His cough has been more frequent and junkier, but as anyone around here right now knows, the allergens in the air are very high. The Pulmonologist joked, "sorry dude, you're just allergic to like, everything, outside". So, that doesn't help his lung function. We agreed to see what he is culturing, and if he isn't culturing anything that needs attention, in two months if his PFT's are still low, we will go back on Tobi for 6 month cycles, just in case there is still some Pseudomonas lerking somewhere in his lungs.

Also, May is CF Awareness month! The clinic put these up in the rooms, and encouraged us to take a picture to put on social media.

While we were waiting for X-rays before clinic, Azer noticed the mom of a blog I follow, whose son also has CF. They waved at each other from a distance, and smiled under their masks, lifted their shirts to show each other their G-tubes. Such a small gesture, but very impacting for Azer to see another that does many of the same things he does. He asked a lot of questions later on in the day about what the boy does that is the same as him, and what he has had to deal with that is different. I hope that someday, there doesn't have such a great distance between those who share the same burdens of this disease.

March 29, 2016

Great Strides 2016

You may know, Azer has Cystic Fibrosis. This is a genetic disease. It affects how the body makes mucus. The mucus in Azer’s body is very thick, and causes chronic and frequent lung infections. It also causes him to have a hard time digesting fat and protein. He eats high calorie foods to try to compensate for this, but he is unable to eat enough to gain weight, hence the need for the feeding tube. He receives more than 1,200 calories through it a day.

Azer takes about 20 medications a day, and does about 2 hours of breathing treatments a day to keep his lungs clear. We also exercise and jog. Exercise is one of the best ways to keep his lungs healthy, we’ve found.

The life expectancy used to be only in the teens. But now, the average life expectancy is 37 years. The Cystic Fibrosis Foundation works hard creating new medications, and they are working to find a potential cure, too.

We are walking at the Dallas Great Strides 5k Walk, Saturday May 21st. Check in is at 8:00am being held at the Vitruvian Park in the heart of Addison.  

We are a team this year, called Joggers for Azer. If you are interested in walking with us this year, you can sign up here to join our team

If you can’t walk on Saturday, that’s ok too!! Go to the website, and if you could donate a dollar, we would love it! The funds go directly to the CF Foundation, which goes to research for Cystic Fibrosis.

Dallas Great Strides
5k Walk
Saturday, May 21, 2016
Check in: 8am
Walk: 9am
Location: Vitruvian Park,
Addison, TX

Fun, Food and Much More!

March 25, 2016

Cystic Fibrosis Can Be A Full Time Job

3am, hear pump beeping. Check clock. If it's earlier than 3am, go check to see if he rolled over. If 3am, it's probably ok. Go back to sleep. He's coughing now. Please don't let him throw up or reflux everywhere.

5:15, alarm goes off, Azer wakes up to go to the bathroom.
Get up, Run with him for 30 mins, or run/walk for an hour. Encourage him to try to run harder/faster.

6:30 Azer starts vest and nebulizer cups, and morning G-tube feed.

Getting Some Homework In During Morning Treatment

7:20 am As Azer is brushing his teeth, I fill the pill box. Make mental notes of each bottle and what is getting low, and need to order soon.

Take kids to school. Remind Azer to drink liquids!

Start vacuuming house. Vacuum everyday in case there is dirt, or dust that could aggravate his asthmatic component
Put mask, nose attachment, and spacer in rubbing alcohol, swap nebulizer cups in vinegar.
Rinse nebulizer cups and put in sterilizer. Make note of level of distilled water.
Take Aerobika apart, clean and put in sterilizer
Take things out of rubbing alcohol and air dry
To help me remember to take Tobi, albuterol, and spacer with me to school later, put in ziplock bag

Start cleaning kitchen. Let cleaner sit in sink drains in case there is Pseudomonas in there
Let cleaner sit on kitchen floor spot of formula dripped
sterilize dining table in case there is staph coughed on it, never know it might make him sick.
Clean their bathroom. Sterilize his toothbrush, let cleaner sit in drain, clean his toilet, notice there is remnant of fatty stool. he didn't eat much for dinner, I don't know why he's not absorbing like he should.
Pass by his room. Grab the empty formula bag and empty formula boxes. Take to kitchen to recycle, clean his G-tube extension with hot water.

10;45am Time to go to the school. Grab ziplock bag. Make sure Tobi is in there. Nurse calls him into the office. Albuterol, 10 Aerobika blows. I do a push on both sides of his chest, he sounds like crap. He does his Tobi and he goes to lunch.

I'm free till 3pm! Keep track of copay programs, insurance, what needs to be printed, and sent in.

One Week's Amount of Pills

3pm, drive to school, pick up kids. Home by 3:30. Start Aerobika. Formula time, bolus feed. Make mental note of when I need to order formula next. If the pill box has oral antibiotics, take the vitamin out or he might vomit. Ask how many times he's had a bowel movement, even though he obviously had a fatty one last night. He can get constipated in a day. Use judgement to decide if he needs Miralax or not.  Try to get him to clean  his room. (Way harder than anything else here... lol)

Bolus Feed

5pm, Make Scandishake in blender. Boost still hasn't gotten here. Why? Remember to check Live 2 Thrive program, and check status. Need more milk, using about a half a gallon a day.

6pm, Azer needs to eat dinner. Make sure dinner pills are out of the box. He eats dinner does the Scandishake as a bolus.

7:30, start evening nebulizers.

Cystic Fibrosis Weapons

About 8, start CPT. Husband has been helping me with this lately, as I have had sternum pain (from doing it so often? I don't know) Pushes on all sides of his chest while he huff coughs. Aerobika, Symbicort, Nasal Spray, Tobi. Make sure Azer brushes his teeth, or he might get oral thrush from steroids.

Make sure nebulizer cups are in vinegar.

Start night time feed. Make sure he takes his pills and they're not sitting on the night stand. Tape him up so we don't end up with two possibilities. Possibility #1, he rolls over on it, if no one hears it beep, he doesn't get the full dosage of the night time feed, and he desperately needs those calories. Possibility #2, it becomes disconnected somewhere and he may or may not wake up to stop the pump, and we end up with soaked clothes, soaked bed, floor, etc.  Make sure bed side fan is pointing at his face. Feel scared that he feels the need to have air blowing on his face, possible night time low oxygen. Hope we don't have to deal with oxygen soon.

Why do all of this? If one thing I did will make him a little healthier, help him live just a little longer, spend more time out of the hospital, have more assurance that he will outlive me, then it's worth it.

You can help make our day a little easier by helping fund CF research. You can join us at our Great Strides Walk, or help raise money by clicking here. Thank you :-)

March 11, 2016

No Pseudomonas!!

So, for the past two weeks, Azer has said he felt more congested. He also started coughing up brown to black chunks of mucus in the morning. So, Monday we went to get cultures, PFT's and an IGE level check just in case he had ABPA again. 

He gained 2 pounds in a month, but his FEV1 was down a little from last month. 

A few days ago, we got the test result back from the IGE and it is lower than was last September. We've been waiting expectantly to see if he is culturing something, but today it finally came back negative for Pseudomonas and for Aspergillus! Yay! 

February 23, 2016

Bone Density Scan

The Bone Density Scan doesn't even need it's own blog post, but based on our experience today, I felt like it did. 

So, at our last CF appointment, our GI doctor said he would need a bone age study to rule out growth problems and osteopenia. I didn't realize until today that he was actually having a bone density scan done instead. The orders to do the bone age study may be there, but I am not sure. 

Anyhow, the nurse/technician was nice enough. She was trying to explain to Azer what she was going to do and why. He was having a sort of teenager-ish time, and was kind of giving her the "I really don't care how and why, let's just get this over with" look. So, I mentioned to him that we're getting this done so we can maybe find out why you're not growing very fast. The technician hurriedly explained to me that this is not what this test is for, and that it was to find out how dense his bones are. From everything I've read before, I assumed the bone density tests would start when he was 18, so I mentioned that. Her responses felt very argumentative, so I just stopped talking. 

She first scanned what looked like his spine. She then had him sit up, and place his right arm on the table to scan it. When she was about to start scanning his right hand, she asked if he was right handed. I said that I was sorry, he is left handed in baseball, and most other things except for writing. I told her when he was about 4 years old (at that point I had no idea he could possibly be left handed) I taught him to write right handed. It wasn't until later when we began to play catch together that I realized he was left handed. By then, he was already pretty good at writing with his right hand, so it stuck. (I realized recently how left-dominate he is when we found out he is left eye dominate as well). She then told me that it can be very damaging for brain development to force someone to write with the less dominate hand. By now, I just decided to stop defending myself, and just looked around the room while the computer "measured" his bone density. 

It was a pretty quick appointment, so he was able to go back to school for the rest of the day. 

This evening, as I was going over today's visit in my head, I texted Azer. The screenshot sums it up lol. 

February 13, 2016


The antibiotic called Bactrim, that Azer has been on has been making him vomit, usually once a day. Last week, he vomited so hard, his nose started to bleed. Last night, we started the antibiotic Cipro. The Bactrim had to be given three times a day, the Cipro twice a day, so he ended up having to take them at the same time this morning. On our way to his baseball tournament, he threw up everything, formula, antacids, antibiotics... I knew this wasn't going to work.

So, I called the on-call doctor, and they are taking him off the Bactrim and Cipro, and putting him on Levaquin. The doctor said it treats all the of bacteria he is culturing including the Pseudomonas, which is awesome. I am glad he only needs to be on one oral antibiotic.

Azer did say that the inhaled Tobi is making him feel a little icky, like the beginning of a cold feeling. Hopefully that feeling won't last through the whole month.

So, basically, the Tobi Podhaler has these four capsules. He has to inhale 4 of them twice a day.

The little device in his hand pierces the capsule and then he has to inhale the powder (weird right) and hold it for 5 seconds. He says the urge to cough it out immediately makes it hard to hold his breath, but he manages.

He did great pitching today, and pitched into the 4th inning!

February 8, 2016


Well, the antibiotic Azer has been on has been causing some vomiting, but nothing too terrible. He initially said the Bactrim was helping his lungs, but a few days into it, he said his lungs felt tight. Unfortunately, the reason for this is that his culture came back, and it was positive for Pseudomonas. He hasn't cultured this since 2013.

Pseudomonas Aeruginosa (or PA), can be a very aggressive bacteria in CF. It can cause further lung damage and can be difficult to eradicate. PA is one of the reasons for boiling the nebulizer cups, as it can survive normal washing. They said he has 2 colonies of it right now. Apparently, we can think of the colonies of pseudomonas like little apartments of bacteria, each one living in a different complex. How they can figure that out from a sputum culture, I have no idea.

We will treat the Pseudo using the Tobi Podhaler again. This worked out very well last time. The normal treatment for pseudomonas is inhaled Tobramycin, or Tobi, which is an antibiotic which is inhaled. This is inhaled though the nebulizer and usually takes about 45 minutes. With the Tobi Podhaler, which only takes about 6 minutes to inhale the powdered antibiotic.

On top of the Tobi, he is going to have to do Cipro in addition to finishing his course of Bactrim. The PA has to be treated aggressively. I hope we can control or eradicate it as quickly as we did last time!

February 2, 2016


Had another fairly good CF clinic appointment. He is now 100 lbs! Triple digits! The formula is working great, and he is absorbing most of it. He isn't eating a whole lot, but they aren't really concerned with that right now since our goal at the moment is to get him growing taller. Which isn't really happening. In a few months, he's only grown a tiny amount. We have not heard back from the endocrinologist since the last appointment, so our GI doctor is going to put in another referral. He is going to need an X-ray for bone age to rule out any osteopenia. While their at it, they will do an X-ray to make sure his scoliosis hasn't progressed. We are facing a real possibility of growth hormones, which can put him at an increased risk of CF related diabetes, so the endocrinologist will need to evaluate the risk versus the benefit of getting him to grow. The GI doctor said with the X-rays and all these months of aggressively gaining weight without growing will provide evidence to the endocrinologist that we have tried to get his body to grow on it's own. It is not clear why children with CF sometimes do not grow as they should, even with above optimum nutrition

Azer's Mic-key button has been bothering him a great deal lately. Apparently within a few months, he outgrew his last size, so an ostomy nurse came and put in a larger size. He said it felt so much better after. 

The erythromycin has been working very well to control his feelings of bloating and fullness, although it doesn't seem to be actually making the stomach empty faster. The CF doctor wants us to discontinue azithromycin, since they both are in the same class of drug, and he has not cultured pseudomonas since 2013. She mentioned that if he does culture Pseudo again, we can put him back on azithromycin at that time. Some studies have shown that azithromycin can prevent pseudomonas from growing a biofilm, which is like a shield that it can grow to prevent antibiotics from killing it.

During spring break, our GI doctor would like us to back the bethanechol to twice a day instead of with every meal. 

We all had a virus come through the household about a week ago, and as can often happen with Azer, the virus left, but the congestion in his lungs can stay and get worse in a short time. His cough was concerning to her, so she wants to put him on an oral antibiotic for a few weeks to help his lungs clear the junk out. His Fev1 was 86%, which both the doctor and I agreed wasn't bad, but we know he can blow higher.

Our CF clinic is beginning to test CF patients 12 years and older for depression and anxiety, which will be confidential between him and the doctors. It is good that they have started this early, so if he has issues later in life, he will hopefully feel confident enough to share any of those feelings with them before they become issues.