Compliance, Virus and Admission

This has been quite the difficult month. Azer ended up getting a virus which made him pretty sick with fevers. He went to clinic to get checked out. Unfortunately, he hasn't been doing breathing treatments as much as he should. It is difficult to make time for treatments when he wants to be out with friends and when he comes home from work late at night, especially when he says he doesn't feel that bad. The clinic has been trying to work with him on ideas on how to fit it all in, and what can be cut out as long as he tries to stay compliant. His lung function has been steadily declining because of not taking medications and doing breathing treatments consistently. 

Unfortunately, this is what many adolescent/young adults with CF go through. They choose life, friends, work over CF, and ignore their health until sometimes it lands them in the hospital not realizing what they are doing to their body. Ronnie Sharpe went through this as well. His blog post here is especially helpful. 

http://runsickboyrun.blogspot.com/2016/01/being-parent-to-teenager-with-cystic.html?m=1

He hasn't put on any weight in quite a while. It has been stable, but they believe his body has been compensating by using his muscles as fuel. He has been eating very well, but the doctors don't believe that he can gain weight without using his g-tube. They said he has been experiencing "starvation brain" from not doing his G-tube feeds. 

The doctors recommended that he get admitted to the hospital, as his lung function fell even more this time. He felt that he might be able to avoid the admission with oral antibio

tics and steroids, but late that night, his fever spiked, and he went back to get admitted.

They had an EKG done as one of the medications can rarely cause heart rhythm issues. The EKG results seemed to indicate that the right side of his heart was enlarged. They next day, they did an echocardiogram. It showed everything was perfect with his heart. The pulmonologist said that the likely reason his EKG was interpreted that way was because Azer has lost so much weight, that it makes his heart appear too large for his body. 

The hospital started him on the usual antibiotic for his MSSA. His lung cultures came back that he is now culturing two new bacteria: psuedomonas and achromobacter. They added two more IV antibiotics. Shortly after they added the new IV meds, Azer began to have mental confusion. He has trouble finding words, is having trouble remembering many things. They had the psychiatric team come and evaluate him. They ran a few tests. They thought perhaps he was showing signs of depression again. They have started him back on his ADHD and depression medications at low doses to slowly taper him back to theraputic doses. This hasn't helped. He couldn't spell a simple word backwards, or say the months of the year in order. He is having trouble sending text messages, and has to make phone calls. He doesn't remember sending some texts, or some conversations. Doing school assignments has been impossible, as he can't comprehend the words he's reading. After a week of feeling like his concerns were being dismissed, I finally stepped in and said this is not depression or normal for him at all. After looking up medication side effects, I found out that one of the IV meds he's on can cause temporospatial disorientation. The CF pulmonologist that is on the floor this week finally recognized what Azer is going through and validated our concerns. It seems to be caused by basically a perfect storm of the IV medications he's on. It seems they want to continue both of them for double coverage of the pseudomonas, even though it is causing distressing side effects.

His glucose levels have been a little high, as well has his liver and kidney enzymes. He has been working hard on keeping his fluid uptake up, he is even above 2x what he should be drinking, but all the levels are still kind of high. They aren't really concerned about it as it's temporary from the medications he's on. 

His lung function has been slowly going up over the week since admission, but yesterday it went down a point. 

CF Clinic

Today, Azer's PFT was quite a bit higher than two weeks ago. This is despite being off of Tobramycin for several weeks due to pharmacy issues. 

He lost several pounds over the past two weeks, mostly due to not being consistent with his overnight feeds, but he plans to start getting them ready before he goes to work so he doesn't have to push himself to do it late at night. 

Azer was invited to do another study, this one being for breathing treatment compliance, if he qualifies. 

CF Clinic and Sweat Test

For about two weeks, Azer has been experiencing symptoms of either a virus or allergies, with worsening CF symptoms. He called his doctor on Monday and she told him to take a high dose of OTC allergy pills. It has helped some, but most of his symptoms are related to his sinuses. He felt well enough to wait for a clinic visit for today.

Today Azer was 10 pounds less than he was when he was discharged from the hospital. He hasn't been able to do all of his night feeds as he his stomach has been filling up with mucus. There weren't too many changes in his routine so far. They are running a virus panel, but will likely put him in steroids for about a week. His lung function was lower than it was when he was in the hospital, but they want to see him back in two weeks to make sure it doesn't start tanking. 

Today, the clinic researcher scheduled Azer for a sweat test. This is a Trikafta study to see if people on Trikafta have a lower salt value in their sweat than before they were on Trikafta. People with CF have an abnormally high amount of salt in their sweat. Azer had this test when he was born to confirm he had CF before his mutations were found. It will be interesting to see if his salt concentration is still high. 

CF Clinic

About two weeks ago, Azer started to cough a lot more, and his cough was becoming more productive. He couldn't tell if it was a virus or if the antibiotics just weren't working anymore. He contacted the clinic and he tried steroids for about a week. He said they seemed to work, but the day after he finished them, he was back to feeling pretty bad. The clinic said he could try a different oral antibiotic with increased treatments or he could be admitted. He decided to try the new antibiotic. Starting last Thursday, he was feeling so bad, he came home from school and slept the rest of the day. He woke up feeling cold and had a headache and sore throat. He did a PFT at home and it was almost 30 points down from his years best. He took the weekend off of work to rest and increase treatments. His pulmonologist was really wanting to admit him Tuesday. He wanted to stay home from school to do more breathing treatments, but started to feel better later on in the week. 

At clinic Friday, his PFT was better than two weeks ago and much better than last Thursday. His doctor said he could finish out this course of antibiotics and then go back to the previous one. She said she would contact the infectious disease doctors to see if they have any advice or change of plans, since he still shows abundent MSSA in his sinuses and lungs. He has also cultured some rare growth fungus.

He lost a little more weight this time, as he has been doing less formula than the clinic recommends. At clinic, he is doing all the visits on his own now, and his doing a great job communicating with the entire staff about what works and doesn't work for him and his schedule. 

CF Clinic

Azer has continued to have a constant cough, and is most productive in the morning. He told the doctor's today that he has continual drainage from his sinuses that gets better temporarily with nasal rinses. His lungs sound perfectly clear, even though his PFTs were significantly lower than last time. The culture that his ENT took last week showed abundent growth of MSSA. His pulmonologist decided to add a week of oral steroids, add additional antibiotics to his nasal rinses, to start a steroid nasal spray and to add another steroid inhaler to his breathing treatment. They plan to meet again in two weeks if he's not feeling better.

Azer also lost another pound from last week. He has been eating a lot more since they increased his appetite stimulant, but not been doing his morning g-tube feed. This hasn't been enough to maintain his weight, so the GI team worked with him to find ways that he could add calories and extra snacks into his day, especially in-between classes at school. 

Follow Up Clinic

Azer finally had a good clinic day! His weight is stable, and his PFTs were only a little lower than they were when he got discharged from the hospital. The doctor said his lungs sounded clear and not crackly or wheezy. The very dark mucus that he coughed up before he got discharged came back, and there was no bacteria in it, which was interesting, as it was the darkest stuff he has ever coughed up. 

Last week, a few days after Azer went fishing, he started to go downhill again. He began to cough up dark mucus, was exhausted and felt chilled. He didn't have a fever, and it seems that whatever this was went away after a few days. It seems lately that this has been a trend, that he feels worse after spending time around water, or outdoors for an extended period of time.  

His doctor wants him to continue his antibiotic treatment, which would last three more months depending on how he feels. The timing on taking them is only three times a day, so it isn't too burdensome. It also hasn't been hard on his GI. He still hasn't had much of an appetite since the Nissen, but his stomach pain is getting better a little at a time. 

A few months ago, the CF clinic's psycologist brought up the suggestion for Azer to go back on homebound instruction with the school. Normally, this is only an option when a student can't attend in person due to illness. Over this school year, it was becoming increasingly difficult for Azer to stay caught up. He spent so many weeks with a fever, and being so ill he was in bed all day, he fell so far behind, we didn't know what to do. He was also struggling finding the right ADHD medication that worked best for him, and doing Connected Learning while unmedicated was extremely difficult. We are grateful that the psycologist brought up the homebound suggestion. Since then, the school has been more than helpful in decreasing his workload, especially when he's been sick, and modifying his classes to help him get the credits he needs to graduate. They also helped further modify his 504 plan. This has greatly reduced Azer's stress. 

Admission Again

Since his last clinic visit, his lungs kind of stayed the same, but over the last few days, they have grown much worse. They are admitting him again today. This is the 6th time this year, and they still don't have a definitive answer for this. The doctor brought up the possibility of getting a port in the near future, and possibly needing IV antibiotics every other month. This is discouraging to think of this, as it could really change his ability to play baseball. 

He has had quite a bit of stomach pain over the last few weeks. He tries to vent his stomach, but nothing comes out. He had an incident where he had extreme stomach pain and threw up just water. He lost more weight since he was last admitted. I think he's down almost 10 lbs since he got discharged from the last hospitalization. They may try a special kind of G-tube bag while he's admitted to help the air vent out. Since he's been still having stomach pain and trouble swallowing some foods, the dietician would prefer him to continue a mechanical soft diet. 

Azer also saw his endocrinologist today. She ordered some lab draws and x-rays, including a bone age scan, since it's been about a year since those were done. These are to check to see how much time he has left to grow, and how long he could continue to take his growth hormone shots. They also check to make sure he hasn't developed diabetes, as growth hormones can potentially cause this. 

He also had a chest x-ray done, and then he is going home to pack for yet another hospital stay. This is hard with it being December...

Surgery and ENT Appointments

This week Azer had an appointment with surgery and with ENT. The surgery appointment was basically just a formality to make sure his stiches had disolved and that things had healed well. He was given the all clear to increase the rate of his G-tube feeds, provided it's not causing pain. He has been gradually able to eat more food, but still has to eat smaller than his usual amount at a time. 

The ENT appointment was to see if anything in his sinuses is causing him to get sick again. The ENT doctor said everything looked good, and she didn't see any polyps. She recommended him to continue to use his sinus rinses at least once a day. 

He is still coughing quite a bit, but hasn't had fevers or chills this time. The CF clinic said that if his lungs continue to decline, they may start oral or inhaled antibiotics. 

CF Clinic

It's been about 4 weeks since Azer's surgery. He has been throwing up pretty much with each meal. The GI team said he should make sure everything he eats is basically moist or wet and that he should try to chew longer and take smaller bites.

He has lost 7 lbs since getting discharged from the hospital. His weight loss is due to him not being able to eat as much as he usually does. He also had a braces adjustment where they are correcting for a cross bite, and the elastics are causing a lot of pain, even weeks later. Azer is already off of one of his stomach motility medications. Today they want him to stop one of the antacids he's been taking for a few years. They said the goal is to stop taking most of his GI medications. 

About a week ago, Azer started having an increased cough and was coughing up darker mucus, pretty much all day. After increasing treatments, he started to feel a little better. His PFTs were pretty much at his baseline today, and a little higher than when he got discharged from the hospital. The doctor said his lungs sound pretty clear except for a few crackles. They wonder if most of it is draining from his sinuses and think a visit to see ENT might be helpful. In the meantime, they want him to use an anti-inflammation nasal spray before his nasal rinses. 

Ready To Leave

Azer is very ready to go home, and has been cleared by the surgeon to go home. The GI doctor would like him to stay until Monday. Their reason is by Monday, his IV antibiotic course would be complete, and he would be able to do another PFT test. His PFT from yesterday was worse than when he came in, which is to be expected. They did an X-ray earlier in the week, which showed that he still had some gas in his abdomen, so it still hurts to take a deep breath.

They have been slowly increasing the rate of his G-tube feeds, and by Monday he should be at the rate they have been aiming for. They want to make sure that he is tolerating the speed and amount of formula. They are also taking away one of his GI medications now that Azer cannot reflux. 

Azer felt like he might have been refluxing, but he later realized that the burning feeling isn't going up to his esophogus, that it is staying lower. He said the new medication that coats his esophogus doesn't help the burning, but that tums does help. This is great news, as it shows that the Nissen is working. 

More good news is that Azer hasn't needed any pain medication for the last few days, even though he has been increasing his activity during PT. 

Admission - Again

So originally, Azer's surgery was scheduled for the end of October. He had a telemed visit with his pulmonologist. Azer has been doing an inhaled antibiotic which still hasn't helped the chills, increased cough or the fatigue. She opted to push the surgery date to next week, and to admit today. She wanted to admit Azer several days before surgery to start IV antibiotics, to get his lungs as healthy as possible. He will likely have trouble coughing after surgery. 

It feels strange to be back in the hospital so soon after last time. Azer had his third Covid-19 test today. There isn't an exact date or time for surgery yet. The main worry Azer has is about the possibility of the surgeon moving his G-tube to a different location. Azer remembers that the surgery for his G-tube was pretty painful and he doesn't want to experience that again. 

Low Oxygen

Azer's oxygen is low, and lung function is almost 30 points down from his year's best. His lungs sound congested and crackly. The RT said he's breathing shallow and fast. She's never seen him look this bad. They are continuously monitoring his oxygen saturation, especially while he sleeps tonight. If he's not able to keep his oxygen up, they may put him on oxygen tonight. 

The doctors put in an order for two IV antibiotics, but they are to treat bacteria he used to grow. They are getting a culture today to see if he's growing anything new. He tested negative for all viruses including Covid 19, so it's not a virus making him so sick. He shouldn't be this sick after doing two weeks of antibiotics a month ago. 

They don't know what it is that's making him so sick over and over. The PICC team tried to see if they can use his left arm, as his right arm has been used so much this year, it is causing the vein to scar much quicker. Unfortunately, they can't use the vein in his left arm. The PICC team was very patient and showed us that on the ultrasound, the vein disappears further up the arm. I asked a lot of questions about what would factor into the decision of getting a Port, since it was mentioned today, because of the fact that this is his 4th PICC line this year. Hopefully the PICC line goes in easy. 

ENT

Azer had a quick televisit with his Pulmonologist this week, just to update her on how he is. Azer has been taking an OTC nasal decongestant, which has been helping the cough somewhat. It also seems to be causing some ear pain, and headaches in the evening, which are helped with his sinus rinses. The doctor said that because the cough is worse in the morning, and gets better throughout the day, this sounds like it may be a sinus problem. He has been outside a lot more, so she told him he could try an additional allergy pill in the morning. The lung burning seems to be resolved, so it likely was some inflammation in the chest wall caused by excessive coughing. Azer had an orthodontist appointment about a week after having his wisdom teeth out, so his teeth have been very sore, and he's also had very little appetite.

His ENT visit went fairly quickly today. Azer told her everything that they've tried to help his cough. He let her know that if this isn't a sinus problem, the only other option going forward is a bronchoscopy.

She looked in his nose. There is some inflammation, as there always is, and some visible polyps. She wants to get a CT scan done, but right now, it would be difficult to get a clear picture of the polyps among all the inflammation. She is giving Azer about a month of antibiotics, and is adding another steroid ointment to his nasal rinse on top of the pulmicort and inhaled pulmozyme. She is also adding an antihistamine spray with his usual Flonase. After three weeks of this, he will have a CT scan done, and she will assess if things have gotten any better. If not, Azer might be having another polyp removal surgery. The ENT doctor said she would discuss with the pulmonologist if it would be possible to schedule a bronchoscopy during the same surgery.

Clinic Visit

The CF doctor felt that an in person visit was needed at this point, as Azer's cough hasn't gone away. He felt like the sinus rinses improved the cough somewhat. He is unsure if adding the EES has done that much, other than possibly stopping the fevers. Azer wants to stop the EES and go back to taking the Trikafta normally, as he feels like the Trikafta isn't as effective this way.

Last week, Azer had his wisdom teeth removed, which went very well, and he recovered quickly, and he was able to do PFT's today. His lung function was really good today, for how he sounded. The doctor heard some crackling in one lung, but it moved after he coughed.

When Azer had his teeth removed, he started a high dose of ibuprofen for pain, and he said his lungs haven't burned while on it. The doctor felt like this may indicate some irritation of the chest bones, and less likely due to reflux. She said he should discontinue the ibuprofen as it is hard on the stomach and kidneys. Since his cough has improved with the steroids added to his nasal rinses, she wants him to continue with this and she is making an appointment for him to see the ENT doctor. He had a chest X-ray today, and they are running a normal CF culture, and also an additional one to test for microbacterium, just in case.

The doctor mentioned that if the fevers continued, he may need to come in for IV's, but Azer has been frustrated that they are still reaching for possibilities of what this could be. He said he's been on oral and inhaled antibiotics, oral and inhaled steroids, and neither of those have helped at all. The doctor agreed he's been coughing for too long, and that if the ENT can't find any cause, and the fevers come back, that it may be time for a bronchoscopy. She would want to do this inpatient, as usually this can lower lung function temporarily. Due to Covid-19, he would have to be tested in another portion of the hospital first, before being allowed to check in normally. Hopefully, we have answers before this becomes necessary!

Still Coughing A Lot

About a week into doing the inhaled steroids, Azer still was coughing so much that he was feeling very fatigued. He had another telemed visit with his Pulmonologist. There didn't seem to be a lot of options on what to try next. Azer suggested an inhaled antibiotic, Ceftaz, as this has helped in the past. The doctor said it was worth a try, even though his last culture didn't show any bacteria at all.

It seems impossible, but it appeared to be making his cough worse, and his cough turned wet. He said his lungs felt full. He contacted the clinic again, and they decided to test the aspiration theory. He started a modified dose of Trikafta, and restarted the EES. The first week of this, he had a lot of bloating, but this got better, and the fevers stopped. 

The coughing never got better. Azer had another telemed visit with the clinic. The doctor agreed with Azer that the coughing has been going on for far too long. She didn't think another course of antibiotics would help. He is starting a new sinus routine with steroids in his nasal rinse just in case there is some polyps that are causing mucus to drain into his lungs. She also felt like it was a good idea for him to try to be better hydrated, as this can only help hydrated his lungs and thin any secretions in his sinuses. 

Still Not Feeling Great

Azer had his first PFT today since admission. It is close to his baseline, but he said lungs still feel very irritated. The hyper-saline caused so much irritation this morning that he coughed for hours. He was exhausted by the time they came for PFTs. He asked the doctor if he could either stop doing it, or do a lower percentage.

The night of admission, the nurse who tried to put in his IV didn't do it quite right, and it hurt him so bad, he was sweating. The IV team was able to put it in quickly and painlessly. The PICC team had to put his PICC line in on his other arm this time, as the arm they usually use is still sore from the PICC line last month. He had an IV and PICC line on the same arm that day.

Most of the tests for Aspergillus came back, and they are all lower numbers than he's had in years, so the Dupixant is working wonderfully. His viral panel was negative, so they are just treating the bacteria he has cultured in the past. This doesn't really give a clear answer on why he is so sick a month after his last admission.

Everyday, it seems he's had less and less energy. He has had no appetite at all. The antibiotics are upsetting his stomach very badly this time. He says he hasn't been sleeping well. Even though his lung function is up, he isn't feeling well overall. He just seems to be feeling worse since he got admitted. We are hoping that the Trikafta isn't causing his decline.

Week 6 and Clinic

Azer still felt good even through the switch to oral antibiotics. Going home without a PICC line was worth it, as the very next day he got discharged, it actually snowed, and he had a blast sledding and playing in the snow.

He hasn't been coughing as much, and isn't bringing up much mucus during treatments. He has gone back to doing hyper sal twice a day. He coughed up sort of bloody mucus one day and other days, dark mucus. His cough continued to be clear even after he finished his antibiotics. He hasn't been able to laugh without having a cough attack in a very long time, but this week, it has gotten so much better. Through out week 6, he got off and on pain in his chest, and he couldn't tell if heart pain or lung pain, but it was most likely a mucus plug moving out.

Insurance is requiring us to switch his Dupixant to another pharmacy or they won't pay it. We have been fighting to get it, and unfortunately he ran out of it and has been experiencing increased mucus and allergy symptoms, which proves how much it was actually helping. When he was admitted, they tested his IGE levels, and they were lower than they have been in 8 years. The Dupixant has helped immensely, so it is frustrating to not be able to have it right now. They are also requiring us to switch his Trikafta as well, and he has a little over a week left, so I am really hoping it gets transfered before he runs out. The doctor assured us that other people with CF that have struggled getting their Trikafta due to insurance have done pretty well being off of it for a week. We are also having a hard time getting his growth hormones covered, as he hasn't grown much at all in the past year, and according to the insurance, there is no reason for him to continue being on them. 

Azer has been continuing to do 6 cans of formula a day, and he has slowly been regaining the weight he lost. He feels like the Remeron is helping, as he actually has an appetite now, even when taking his ADHD medication. He has had some painful reflux since he started eating solid food though. The GI doctor is increasing his enzyme dosage and also temporarily doubling his Nexium dosage.

His PFTs were lower than when he was discharged. This is most likely due to his allergy symptoms from not having his Dupixant shot. One thing that was different on the test was that normally the slope of his exhale shows lung restriction. This time, it was showing less lung obstruction. The doctor was so pleased with how he sounds, she said he can stop taking one of his inhaled steroids. There is a study starting soon that will show what other medications people with CF can stop taking. They are doing a virus panel to see if his dark/greenish mucus is from the rhinovirus still lingering. The doctor said the virus is presenting in a flu-like way this year, making even healthy people pretty sick. If his lung culture shows anything other than MSSA, she wants him to start I

inhaled antibiotics for a month. 

Azer had his annual PT evaluation, and his capacity on his test was lower than last year. He also has regressed on his posture so, we may need to start out patient PT again. Azer has had some tendon issues in his left wrist. It's not too severe, but he does have to hold off on some pitches for a while. The doctor said it's possible that the antibiotic he was on in the hospital caused this to happen. 

Azer mentioned to the doctor that he has had numb and tingly fingertips since starting Trikafta. The doctor figured out that it is aquagenic wrinkling, since the tingling is happening when his hands are sweaty. In some people with CF, aquagenic wrinkling can even be painful, which Azer has experienced when swimming. The doctors took note of all the Trikafta experiences, good and bad, as it helps Vertex see how it affects everyone differently!

Going Home!

Thursday, Azer's PFT results was three points higher than Monday. He was expecting it to be higher, but the weather has been warm and humid, and he figured he's being affected by allergies. His lungs have been sounding pretty clear, and he isn't coughing up very much now. He can laugh without being doubled over in a coughing fit. The doctors were surprised at how fast his lung function went up after only a few days on antibiotics.

Since they stopped the Miralax, he's been going less times a day, but still lose. They did a stool viral panel, and it was clear. They are running a test to see how well his enzymes are working  He still is having no appetite after increasing his Periactin dose. The GI doctor had suggested trying Remeron a while ago, and did an EKG, but at the time, Azer's appetite came back before we started it. They suggested trying it out this time, so they redid the EKG which was normal. So far he hasn't seen any increased appetite, but Azer is pretty sure his lack of appetite is from his ADHD medication. His BMI is still around 50%, and the 6 cans of day of formula is keeping his weight stable, so they aren't too concerned. 

They decided that he is doing so well, he can go home today, and to just to a week on oral antibiotics. It is unusual for him to have his PICC line taken out before even one dressing change! Both Azer and I asked the staff again if they could ask our main CF doctor if this plan is ok with her, just because this is not normal for him.

Azer is very happy with how good he is feeling and how quickly it was for him to recover from this illness, especially for how bad he was feeling for several months. He is ready for baseball season! 

Week 5 and Admission

PICC team said that because Azer has had a PICC line over and over in the same area for years, the vein has become scarred and this may be why he has had pain and bleeding at the site last time. He has had minimal pain with it this time. He really tried to move his arm around while it was healing.

Because of the positive virus test, he is on droplet precaution, so he can't go to the playroom or walk around outside the room, but it's been very nice outdoors, so he goes out as much as possible. His favorite outdoor activity is wiggle ball (swinging only with the non-picc line arm of course 😉).

Azer really hated being continuously hooked up to the IV fluids, so he has been working hard to drink lots of fluids, and got off of continuous fluids, so he is only hooked up three hours at a time for antibiotics.

His diarrhea started to come back last night, probably due to the antibiotics. They are backing off of the Miralax twice a day. The GI team came by to work out a plan for getting his appetite back, and want to do a fecal test to make sure there isn't any unusual intestinal bacteria and check for how well he is absorbing fat. They are increasing his Periactin to help his appetite. It seems his ADHD medication may be dampening his appetite during the day, as around bedtime, he gets a little hungry.

His PFT test yesterday went very well. He is only a little lower than his normal baseline. The doctor wants Azer to stay at least until the end of the week to see if his GI symptoms improve. 

Week 4 and Admission

The week started well, with Azer feeling more energetic but still coughing a lot and zero appetite. Some days, he only had G-tube formula and milk. As the week progressed, his cough became worse, to the point where every time he coughed he would have a coughing fit.

The diarrhea continued until Thursday, when it seemed to finally end. Thursday, he had a low grade fever, and felt much worse, so he contacted the CF clinic. They made an appointment for him Friday. 

He was miserable when we arrived. He said his lungs felt uncomfortable, and he had to breathe shallow just to keep from constantly coughing. 

At clinic, they confirmed his rapid weight loss. The dietician recommended that if he just can't eat anything, his weight loss will continue. She prescribed an extra can of formula during the day, which would make it 6 cans a day, and should meet his daily caloric intake. 

His heart rate was elevated, and he had a low grade fever. His first PFT test was about 30 points lower than his baseline. After an Albuterol treatment, it was slightly higher. It was very difficult for him to complete the PFT test, as he could barely make a complete exhale without coughing. Both the doctor and Azer felt like he never fully recovered from his lung infection that began before he started Trikafta. Two weeks of antibiotics and steroids hadn't touched it, and we were waiting to see if the Trikafta would clear it up, which did not happen.

The doctor said his lungs sounded fairly clear. She said his symptoms and color of mucus really pointed to the possibility of a virus that could be making a lung infection even worse. Azer decided it's best to be admitted for IV antibiotics, to clear up his lungs and also to judge if any of his symptoms are being caused by the Trikafta. The floor was very full, so they sent us home to wait for a bed to be available.

Hopefully they get him feeling better quick he's not in the hospital too long!