Sick Visit

Over the weekend, Azer began to exhibit symptoms of a virus, mainly a sore throat. Over a few days, his cough sounded worse and worse. He had a low grade fever. We went to clinic today after he felt like he couldn't take deep breaths, and was breathing shallow.

He had a fever when we got there, even though he was on ibuprofen and Tylenol. He lost a few pounds since April's appointment. His PFT's were 10 points lower than usual, which was better than we thought it would be, seeing as he could hardly exhale without being doubled over coughing.

He was coughing out pretty dark mucus, his sinuses were full, and it appears he has an ear infection as well.

The best thing is an admission, but Azer wanted to try treating this orally first. We are again having difficulty finding an appropriate antibiotic for him to take that covers Staph and Steno. He can't take Bactrim, as he vomits on that. The GI doctor is taking him off his Erythromycin temporarily so he can take Levofloxin. We are using Reglan (it has a black box warning that I don't like at all)  temporarily, which hopefully will help his motility during his course of antibiotics. He is also starting steroids for about a week.

If he begins having trouble with vomiting, he will be admitted. They ran a virus panel, so we'll see which one he caught.

It's amazing how fast his lungs can take a downward turn. He went swimming yesterday, and ate well, and sounded like he was getting better. He also had braces put on yesterday! We all debated this decision for a long time, knowing that he could potentially lose weight more quickly if his teeth are sore. Luckily, the sore part doesn't last forever, and soon, his smile will be even better.

Update: He is positive for parainfluenza!

CF Clinic Sick Visit Follow Up

This was a follow up to Azer's sick clinic visit last month. He hasn't had another asthma attack since then, and has been breathing fairly well seeing as we are deep in the heart of allergy season. He felt like his PFT's could have been higher, but that he is a little bit more mucusy than normal.

Adding the extra half a can of formula to his night feeds has help. He gained two pounds in three weeks. The dietitian and doctor gave Azer lots of good ideas on other ways to add calories to things he already enjoys eating, including some new snacks he might like to try.

Time management has been difficult this school year, seeing as it's his first year of high school, and first year playing sports in school. I've always told Azer when he was little, because of the CF, you're going to have to work harder than others at everything you do. The social worker today basically said the same thing. Having CF is hard, and makes it harder to have extra time to do what you want. Azer is still learning about what works for him, what time of day works best for him doing treatments and homework, and how exhausting it can be getting to everything late everyday because of practice. He is so passionate about baseball, and we are all doing everything we can to help him continue to play!

CF Clinic - sick visit

On Sunday, Azer was by himself watching a movie when suddenly, he was coughing non-stop and was struggling to breathe. He did an albuterol breathing treatment to see if it would stop. Unfortunately, he continued to cough for two full hours. He was exhausted by the time it started to get better. He coughed up the most mucus I've ever seen at a time. At the end, he coughed up some brown mucus. He said his upper airways hurt after this happened. The on-call doctor said to take him to the ER if another attack happened. Luckily, it hasn't happened again.

He went to clinic yesterday to get a PFT and an X-ray to see if there were any significant changes. His lung function was down slightly, but within normal range, especially for it being allergy season. The doctor said his X-ray looked about the same from last time. The doctor wondered if the attack was a mucus plug coming up. Just to be safe, he will be on a course of oral antibiotics.

Azer lost even more weight from last month, and a total of 8 lbs so far. The dietitian came in to discuss what he's been eating, and what else we can do to change this trend. The appetite stimulant medication he is on seems to help, but with evenings being so busy, he isn't able to take it consistently. Even though his appetite has been pretty good, he hasn't been making meal times a priority. They would like to try another appetite stimulating medication and see if it helps him at all. This medication has the possibility of interacting with other medications. They had to do an EKG first before they could prescribe this medication. It took a while to get a good EKG result, because he wouldn't lay still! 😄

In addition to possibly starting the new medication, he has to start doing an extra can of formula. The doctor warned him that people with CF tend to lose lung function along with weight.

CF Clinic

Azer had an early CF Clinic yesterday, followed by two games an hour away, so needless to say, he is pretty tired today!

Azer lost a few pounds since his last CF appointment, and hasn't grown enough to see a change. The dietician came in to discuss what he eats and how to add calories without disrupting his G-tube feeds too much. He is eating snacks and his appetite has been pretty good lately. He packs his own lunches and fixes his own dinner since he knows what he is craving at the time. So, the only change is to increase the Liquigen added to his night feeds for a small increase in calories. Since he has been lifting weights several times a week, and has had baseball practice nearly everyday, he has been burning quite a few more calories than usual. He has also been visibly putting on a lot of muscle. The dietician mentioned that sometimes the CFF focuses so much on the number of the BMI, without taking into consideration muscle mass and body fat. It would interesting to see the long term effect of a healthy BMI with the a measurement of muscle mass versus a higher BMI and a higher percentage of body fat.

The doctor said to not worry too much about the growth just yet, as the Endocronologist looks at the long term trend.

Azer's Fev1 looked pretty good today. His next CF appointment will be in only a few months instead of longer because of allergy season coming up. We discussed with the doctor that Azer hasn't been able to be consistent with his Periactin as sometimes he gets home too late to take it. If he takes it right before bed, he is so sleepy the next morning, he can barely function. Whenever he misses a few dosages of Periactin during allergy season, he gets so symptomatic, that he feels like he's getting a lung infection.  One of the assistant doctors suggested a prescription allergy medication that is not an anti-histamine so it shouldn't make him drowsy. Hee can also take it with or without Periactin.

About two weeks ago, Azer started to have a sinus headache. Nothing seems to touch it. One morning, during his breathing treatment, he started getting a nose bleed that lasted an hour. He tried to not blow his nose that day, but it started oozing again that night. The weird thing was after the nose bleed, he said he could smell a lot better, but that it was very sore. We let both ENT and his CF doctor know.

Update: ENT said that the nose bleed was possibly caused by winter time dryness, and to use the antibiotic ointment to keep it moist.

Baseball & Breathing Treatments

So far, Azer has been able to manage daily baseball practices in the evening, and doing his breathing treatments. We have helped him get his feed ready in the evenings to help him get to bed earlier.

Last night was his first scrimmage. We bought him a special battery powered portable nebulizer. He was able to use this on the bus on the way back home and got his nebulized medicines done. He said the nebulizer was easy to use and quiet. He didn't have time to do his vest last night, but at least he will be able to get the majority of his treatment done on late nights while away from home.

Azer did a great job staying hydrated and packed lunch and dinner for himself, and when he got home late last night, he managed to get his growth hormones and the rest of his inhaled medications done.

He is exhausted today...

As least he woke up enough to start his breathing treatment this morning lol

Update and Baseball

So, Azer's viral panel came back positive for the Coronavirus, which is basically one of thousands of cold causing viruses. His bacterial culture came back with only sensitive staph. The ENT clinic gave him some antibiotic ointment that he is to put in his nasal rinse everyday to help.

Today, he felt like his lungs just weren't recovering from this virus, so he contacted the CF clinic. The antibiotic that would cover everything he cultured from December would be Levoquin, but he doesn't want to deal with ongoing reflux from having to stop the Erythromycin. The doctor prescribed another antibiotic that will hopefully work.

On top of battling this virus, and the bacteria in his lungs for the past week, Azer has had baseball tryouts for his High School freshman team. He has been working hard to get his treatments done, his PT stretches, lifting weights, sterilize his nebulizers, and try to maintain his weight. He felt like there was no way he would make the team.

It was an emotional day when the coaches sat down with him and told him he has been selected to be one of the pitchers! Azer said he almost teared up when they told him he is inspiring and they want to keep him around. He keeps saying this whole team and the facility is like a dream come true. Anyone that knows Azer, knows he lives and breathes baseball. He has worked so hard to maintain his lung health and to keep his body strong, and it has paid off. He is so excited to spend nearly everyday on the field.

It is going to take some planning and adjustment to schedules to get his treatments done and when he has late weekend games, but we are looking into a battery powered nebulizer. He has noticed he can't eat a big meal before practices, but is starving after, so it will take some practice to figure out when and how much he can eat. Azer isn't too worried about all this however. The main thing he is anxious about his that he required to get a haircut!!!

When we had Azer's 504 meeting for High School this year, it was pretty much the same things it has been in the past: allowance for hydration and snacks, unlimited bathroom breaks, free pass to the nurses office... This year Azer attended the meeting and was able to bring up other issues that arose. We received some 504 suggestions from another family with an older child with CF that Azer really liked. We also addressed the possibility of him being hospitalized during baseball season, and wanted assurance that he wouldn't be penalized from missing practices or games do to doctor visits, or being ill. Azer is really taking charge of being an advocate for himself!

ENT

An update on his CF culture: he cultured Stenotrophomonas, which we had the option of treating if Azer wasn't feeling much better. The problem with treating it is he has to come off of one of his GI motility medications, which causes bad reflux. So, he decided it wasn't worth it to treat right now.

Today was a follow up with ENT. Azer's sense of smell has been great, and he hasn't experienced any loss until this past week, when he came down with some virus. The ENT doctor ran a virus panel to make sure this isn't caused by the flu. She scoped him, and while there weren't any visible polyps, he was pretty irritated and gunked up. They cleaned him out a bit. The doctor suggested that Azer add two packets of the salt mix to his nasal rinse, to help thin the secretions. She will ask our CF doctor about putting him on antibiotics, whether adding it to his nasal rinse routine, or orally.

I will update when I hear about the virus panel and whether he will do antibiotics or not.

CF Clinic

A few weeks ago, Azer went to the allergy clinic for a consultation. He felt like he didn't get much out of it. We mentioned the allergy shots that target IGE that his pulmonolgist said helps some CF patients. He didn't feel like it would help Azer, but did recommend restarting his nasal spray and prescribed some eye drops for eye itchiness. The allergist said that if/when Azer gets ABPA again, that there is a shot that would benefit him at that time.

At clinic, we told the pulmonogist about how the allergy clinic visit went, and she still believes that the shot would help Azer, so they will do some discussions on how to proceed.

Azer lost a little weight, but his BMI is still great. However, the doctor really wants to see him work on packing a better lunch for school, and trying to eat within the time range of his enzymes working. She also recommended that he should consistently add Liquigen to his night feeds, as this is a ready to absorb fat that is easy for his body to use. He should also consistently use Relizorb, which helps him absorb the fat from the formula all night long. She would like him to continue to gain some weight, to have a cushion for whenever he gets sick, as he can lose a lot of weight within a few days when he gets sick enough.

Azer felt like his PFT's weren't going to be great, but managed to do better than he expected. He sounded fairly clear, despite his wet sounding cough. He continues to feel sick when he takes a week off of the Periactin. The doctor suggested taking more OTC allergy medication and increasing nasal rinses during the off weeks. The Periactin has been working great for his appetite, but makes him very drowsy in the morning. The doctor suggested taking it earlier in the evening, so it would perhaps be out of his body sooner.

He has had a lot of nasal drainage over the past week, to where he describes it as feeling like a stream going down the back of his throat. The doctor looked and saw a visible polyp in one nostril. She wondered if the polyps are bad enough to be occluding his sinuses forcing the drainage down the back of his throat instead of draining out of his nose. We may be going to see ENT a bit earlier than expected.

Azer decided that Mr. Glass Head needed some protection this winter

I would like to take this opportunity to remind everyone to please get their flu shots. It not only protects you, but also protects those in our community that could potentially die from flu complications. If you need proof that it works, take a look at how many died last year, when the flu shot was much less effective than usual!

Azer's first 10k

#AzerStrong #CFWarrior

*Lydia*

<http://cffh.convio.net/goto/joggersforazer>

Imagine with Azer <https://youtu.be/qOtsyLSmrbg>
<http://www.azerscfwebsite.com>
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Click Here to Help Find a Cure for CF: Joggers for Azer Great Strides Team
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Sort of Sick

Azer has still been noticing every time he takes a week off of Periactin, he starts feeling worse, his lungs start to sound more congested, and his allergies are pretty bad. He contacted the clinic, and they pushed the referral to an allergy clinic. It has been scheduled. Last week, it happened again, and he sounded pretty bad. The clinic prescribed 5 days of steroids, but the only thing it helped was his appetite. Azer is hoping that the allergy clinic agrees that the allergy shot that the Pulmonologist suggested will work for him.

15 Years

It seems so long ago, and yet like yesterday, 15 years ago. I was handed a medically fragile baby, overwhelmed with what it would take to keep him alive. I had so much responsibility so early on. But, oh I did it; everything those doctors told me to, and beyond.

I held him down when he was only a few months old to force that nebulizer mask on his face. I did hours upon hours of CPT so he could breath.

Eventually, he learned to hold the cups himself, learned to start his Vest on his own, learned to fill his own nebulizer cups.

At such a young age, he knew so many medical terms, and knew what all his medications were for and what they did for his body.

He has learned so much over these past 15 years, but over this past year, he has taken on so much of his own care, it boggles my mind.

All that responsibility that was given to me 15 years ago is now his. Most people I know struggle to get their teenagers to brush their teeth before they rush out of the house to High School. I also struggle to get him to brush his teeth, to prevent a mouth infection caused by multiple steroids. He wakes up extra early to go run to clear his lungs, keeps track of medications that need to be refilled, sterilizes his nebulizer cups, fills his pill box, works hard on his breathing treatments, communicates on his own with the doctors about any changes in his health... This is one tough, responsible teenager y'all.

Happy 15th Birthday Azer! I am so proud of you, and everything you have become.

CF Clinic

Today was a long clinic day, time wise. It was time for Azer's annual blood draws and OGTT (Oral Glucose Tolerance Test). He had to be fasting, and had his blood drawn as soon as we got there. He then had to drink the nasty, sweet glucose liquid (he drank it like a champ). They test his blood again two hours later, so we had plenty of waiting time today. 

We were lucky enough to have a large and comfy clinic room today, which was nice.

There was some confusion on his PFT results today. His height was entered into the computer incorrectly today, which changes the margins of the lung function numbers on the computer. So, initially his numbers were way low. When his height was corrected, he was one point higher than last week. So, he isn't as high has he wants to be, but he is within his normal range for this year (it's generally expected that lung function decreases as the years go on).

We spoke some more about possibly seeing an Allergist and an allergy shot. The doctor said generally, allergy shots don't help people with CF, specifically those whose IGE levels are in normal ranges. However, since Azer's IGE is always high, that the allergy shot she wants to try specifically targets IGE levels. This could also mean it could help him out the next time he ends up growing Aspergillus. 

For the past year, Azer has been talking with our Social Worker about Make-A-Wish, researching different possibilities, and reading about other's wishes. He feels like he has come to a decision about what he wants (he really wanted something that he could enjoy with the family, rather than something solely for himself, because he felt like that would be selfish. I told him he can be selfish in that this is his once in a life time wish, but his mind is made up :) So, he brought it up again to the Social Worker, told her what his wish is, and she will make the request! (He or I will share his wish at a later time)

I really can't believe he's old enough for this, but in a little over a week, he will be 15 years old, and he will get his Learners Permit. I asked the doctor if there were any CF restrictions on driving (there aren't any), I asked the Clinic Physiologist about it, and she recommends that I go on some calming medication, our social worker merely wished us good luck, and when I asked the group of them if they thought Azer was mature enough to drive a car, he proceeded to dab. 

Dabbing in his Dabbing Shirt

Sick Clinic Visit

Last week, Azer had a sore throat that wasn't really improving. Tuesday, at school, he texted me that his shirt was soaked with sweat and he was feeling really cold. We went to CVS to test for Strep throat, but seeing that his throat looked fine, she concluded that it might have been some other infection and prescribed antibiotics.

By Thursday, his cough was worsening, so Azer emailed the clinic about what to do. He was able to be seen that morning. His PFT's weren't as low as he was expecting them to be. The doctor said his lungs sounded fairly clear, although airflow in the lower lobes is diminished. She changed his antibiotics to one that will provide better coverage for the bacteria he usually cultures. She told him that if his lungs don't feel better over the weekend, to let them know, and they will put him on oral steroids.

If he's still sick by next week, which is when we have our usual clinic visit, we will skip his annual OGTT, as when you're sick, your blood sugars can be elevated.

It's been an unusually wet ending for summer here, and unfortunately because of all the rain we've had, it's been like a second spring as far as allergies go. His cough has been kind of on the wet side for over a month. This is despite him being on a prescribed antihistamine, OTC allergy pills, Benadryl at night time, daily nasal rinses, and two inhaled steroids. The doctor asked if we had ever seen an allergist, and that our main pulmonologist was considering allergy shots, which I'm honestly surprised has never been suggested before. We will bring this up at his clinic visit next week.