June 10, 2019

Tentatively Discharged




Azer did his second PFT since he got here, and it was a little higher than last week's. He was annoyed that it wasn't significantly higher given that he had just done a breathing treatment and he felt really clear.

Azer's ABPA and Aspergillus test finally came back, and it looks negative for the most part, but the Pulmonologist said his IGE is still high, and there were particulates of aspergillus antibiodies evident. I'm not exactly sure what that all means, but she said basically we will go home continuing the IV antibiotics. At CF clinic, if his PFTs decline, they will do a CT scan to get a definitive conclusion of if he has ABPA nor not. If it turns out he does, he will either be readmitted or start a course of antifungal through his PICC line. 



Now begins operation "Hospital at Home" featuring Azer's mom as resporitory therapist, pharmacist, nurse, physical therapist and more! 😆




The Job

This kid fights every single day. Even when he isn't in the hospital, or on IVs, he has to work every single day. Pills taken with every meal. Breathing treatments to slow the progress of this disease. Exercises and stretches to keep his body from falling apart so quickly. Running and coughing to clear the thick, sticky mucus from his lungs. Boiling and steaming nebulizer cups after every use. Waking up in sticky formula because something from his G-tube came lose in the night. 

Sometimes it can be hard to see your child fight so hard to breathe at times. He just keeps pushing. He never gives up. 

Don't take the health of your kids for granted. This boy of mine has never woken up a day in his life and missed a breathing treatment. He has never had a meal digest perfectly normal. He has never known a day where he hasn't coughed. If we have a simple day trip, or just a weekend stay somewhere, we can't just pick up and leave. It takes real planning to make sure he won't run out, and has everything he needs to make it just a few days. 

There is no "easy day" with Cystic Fibrosis. 

June 8, 2019

Undecided

Today, another CF doctor was on the floor. Azer and I asked her what was the best decision; go home Monday, or stay until the Aspergillus test comes back. She really feels like the best decision is to stay, because if that test comes back positive, starting a new IV medication at home in addition to the two he is already on would be doable, but difficult. She said on Monday, if it looks like the test will take a long time to come back, then it's probably alright to go home. When she listened to him, she said the same thing everyone else has heard; that he sounds crackly until he coughs, then sounds clear but has some wheezing. 

Azer was talking to her about his allergies, and high IGE level, and she mentioned an allergy shot that specifically helps against IGE levels. Our main CF doctor and an allergist had mentioned it before. It wouldn't help allergy symptoms, but it would help if he gets ABPA frequently. 

Azer had to have another dressing change today because he was sweating from being so active while playing. He definitely seems to be feeling a lot better. 

It also helped cheer him up to be playing Xbox with Dad today 😊 

June 7, 2019

Staying A Little Longer

So, we have been debating whether to go come today, or wait. This morning, one of the CF doctors came in and helped with that decision. She said that she would feel more comfortable with him staying at least until Monday. The test for the Aspergillus and ABPA haven't come back yet. One portion of it came back and looked normal, but that still doesn't answer the question of why his IGE was so high. She was telling us of the order they usually treat things, and that they are first treating what they can see first, which was the bacteria culture. She said if the wheezing in his lungs wasn't improving, it's possible to do a CT scan do check for mold spores. 

Yesterday, we had tentatively planned to go home today, and I guess the case manager started the discharge process, so now we have the medicine and IV supplies ready to take home with us. They also changed one of his IV antibiotics from one that is every 6 hours to one that is every 8, to help our at home schedule.

Azer says his lungs feel about the same but better after doing the IPV. 

He had a dressing change done today, and we have arrangements that if we get discharged, to have the PICC team do the dressing change at clinic. 



Other than that, he has improved his foosball game, and annoyed many by playing a mean game of whiffle ball bouncing off the windows outside!



June 6, 2019

Higher PFT

Azer had a PFT today and his lung function has improved a lot. Azer says his lungs still feel full. He is still coughing up a lot during breathing treatments. This morning, his lungs sounded wheezy and crackly, but they sound clearer this evening.

The doctors ran his IGE levels when we got here, and they are pretty high. Azer's are almost always elevated, but it was high enough where they ran a test to see if he's culturing aspergillus. They are also running a test for ABPA. It takes a while for these results to come in. 

We are debating whether to stay admitted and see what the culture says, or try home IV's and see how it goes. It's always a very difficult decision... 

June 5, 2019

Off of Droplet Caution

Azer has been on droplet precaution since he got admitted because he tested positive for parainfluenza last week. Due to this, he wasn't allowed to leave his room, because of the risk of spreading it to others. We requested a retest last night, and this morning the doctor said it was all negative. He is still on contact, because he cultured MRSA back in 2010, but at least he can walk around outside of his room now!

Azer feels like his cough is better than it was on the day he got admitted, but it's hard to say if it's better than yesterday. His ears don't feel blocked anymore. His mucus isn't streaked with blood and is a lighter color. 

If his PFTs are improving, then there is the possibility that we could go home and finish his IV course. 

An interesting thing I learned: Azer can't be on probiotics while he has a PICC line because there is a possibility of a rare infection occuring. 

June 4, 2019

Living the Hospital Life

Working hard! He will likely be here until at least Thursday when he gets a PFT test to see if there are any marked improvements.





Last night

Azer had a lot of pain for a few hours after getting his PICC line. Hot packs didn't help much, but Tylenol, ibuprofen and time did.

In the middle of the night, they are thinking the blood clot at the PICC line site got disrupted,  and blood filled up all the dressing. They had to do a dressing change in the middle of the night. There is still some blood inside right now, and they will have to do another dressing change today. This can be extremely painful. Hopefully, the site is clotted better now. 

His Relizorb cartridge also ended up breaking while he was asleep and he had formula all in his bed. Needless to say, he was really ready to take a shower this morning!

June 3, 2019

Admission

Yesterday, Azer said he wasn't feeling much better. This morning, he went for a run to try to clear his lungs and had to stop because he felt like he just couldn't breathe well enough.

His CF culture from Wednesday hasn't come back yet, so he will be on the same IV antibiotic as he was taking orally this week. He will also start a broad spectrum antibiotic as well. 

The PICC team was able to come by and put his PICC line in this evening, so he didn't even need to get one IV. One of the PICC team nurses was saying how brave he is to be able to have one put in without sedation. 

May 29, 2019

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!


April 16, 2019

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!

March 27, 2019

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.

February 22, 2019

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.






February 6, 2019

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

February 1, 2019

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!


January 29, 2019

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.