January 12, 2021

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. 

December 22, 2020

Discharged!

Azer's PFT yesterday was much better than last week's test. He still coughed up very dark mucus which they are sending for another culture. They felt comfortable enough with his progress to discharge him. They felt that if he kept the PICC line in, it was an unnecessary risk for infection, so they pulled it out yesterday before we left. The oral antibiotics are very strong. He has to take 5 pills of them at a time! The plan is if he does end up going down hill in the next week, he will be readmitted for a Port and long term IVs. At least he has some time to see if the oral antibiotics work and to be able to enjoy the holidays! 

December 17, 2020

Staying Longer









Well, Azer was supposed to be going home today on oral antibiotics. He had one more PFT before he was supposed to leave. He ended up three points lower than he has this whole time he's been admitted. He also coughed up the darkest mucus he's ever seen. His doctor felt like this is possibly old mucus, as the longer he's on antibiotics, the less irritation his lungs have, which allows old, infected mucus to come out. 

The doctor didn't feel comfortable with discharging him today, and both Azer and I felt like we weren't comfortable going from IVs straight to oral and pulling the PICC out. So, we all worked out a plan we're a bit more comfortable with. He will continue IV antibiotics through the weekend, and then will try out a few days on the oral antibiotics to see how he feels. If he feels ok, he can go home and continue with oral antibiotics, and hopefully will continue to improve. If not, he will go home on IV antibiotics just to get to be home for Christmas. After the holidays, he will be readmitted for a Port. 

The culture came back to find out what kind of NTM he has, and unfortunately he has non tuberculosis mycobacterium abscessus. This type is harder to treat, and requires long term IV antibiotics, and is associated with faster lung disease progression. His doctor is hoping that by treating the MSSA, it will cause the inflammation to go down, and that the Trikafta will keep the mucus thin enough for his lungs to clear the NTM on their own. 

Azer had a bright moment in his day. Usually the Texas Rangers come to the hospital around Christmas time, but because of covid-19, it happened virtually. He got to go down to the studio and host the virtual meeting with a few of the Texas Rangers. He had a blast and asked them of lot of his own questions, especially about how to improve his pitching. He came back a lot happier! 

December 15, 2020

The Plan


As with the last 5 hospitalizations, Azer has been putting on weight again, despite still having stomach pain and no appetite. He has been eating a very small amount at night, and just his G-tube feeds overnight and throughout the morning. The doctors said that the reason he gains weight whenever he's on IV's is because his body isn't working so hard to fight the infection in his lungs. They changed one of his IV antibiotics to a different one to better treat his MSSA. They are avoiding the antibiotic that gave him joint pain last time. 

His main pulmonologist has been working hard trying to figure this all out. She feels like the Infectious Disease doctors might be correct in believing that the MSSA he's been culturing is just overgrowing rapidly whenever the IV antibiotics are stopped. The ID doctors feel like treating it long term might be a good idea. Their plan is to treat it orally over several months. His pulmonologist is trying everything first before we have to resort to the port, as putting in a port will limit his opportunities to be athletic and play baseball. Treating the staph over a long period of time could potentially give other bacteria a chance to grow. 

The culture from clinic only showed MSSA, but the one they ran from after he was admitted showed possible NTM (non-tuberculosis mycobacterium). It takes weeks to identify what strain of this bacteria might be growing. 

The plan is to go home on long term oral antibiotics. If he ends up getting sick yet again, he will be needing a port, and will be treated with IV antibiotics. If he needs to be treated for the NTM, it will depend on what strain he is growing. Some strains can be treated with oral and inhaled antibiotics, others with strong IVs and can take over a year to combat. 

The bone age scan came back, and it shows that Azer's growth plates are almost fused. His Endocrinologist said that he needs to stop his growth hormone injections, as he isn't expected to grow much more, and won't benefit from them at this point. It is a little disappointing that he won't be much taller than he is now.  

This has all taken a toll on us, both mentally and emotionally. We are all weary from this long year of constant hospitalizations and the worry of needing long term IVs. The good news is he should be home in time for Christmas.  

December 7, 2020

So Far

So far, this hospitalization has been much like the last 5 this year. Azer's lungs have improved in a matter of days. His PFT today was about 11 points higher than the day of his admission. They are treating for MSSA again. What we are hearing from the doctors so far is they are still considering a Port and long term IVs to treat staph overgrowth. The CF team is consulting the Infectious Disease doctors about this as well. Hopefully we'll know their decision soon. 

December 2, 2020

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...

November 21, 2020

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. 

November 10, 2020

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. 


October 27, 2020

Home!

Surgery, GI and the Pulmonary teams all feel comfortable with Azer going home today. His PFTs were better than when he got admitted. He has a follow up with the CF clinic and the ENT doctor in a few weeks, as well as a follow up appointment with surgery. He needs to be on the mechanical soft diet for 6 weeks, and keep his G-tube feeds at a rate for the next 6 weeks as well. This one is tough, as his morning feed ends up lasting for 5 hours, so even though he is craving a lot of different foods, he is too full of formula to eat much at all. A friend of Azer's sent some Pho noodles which he should be able to eat!

Having the Nissen has been a learning experience for Azer. He learned he has to be mindful of how well he chews his food. He's found if he doesn't chew well enough, even soft foods kind of stay stuck and don't go down, and eventually come back up again.

GI took Azer off of one of his GI medications, as they felt like he didn't need it anymore, now that he can't physically reflux. He's been off of it for four days now, and he hasn't experienced any bloating, which is amazing. 

Overall, he is recovering very well and is so glad to be home!


October 23, 2020

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. 

October 20, 2020

Continuing to Recover

Azer is recovering well. He is tolerating more of his G-tube feeds, and eating a small amount of food. He is now on all oral pain medications, and his mobility is a lot better. He played several rounds of Foosball and even went to PT.




They did an X-ray just to check on some shoulder pain he had, but it's just some air left in his abdomen from surgery. His lungs look pretty good.

Azer has had some burning in his stomach and reflux that has gotten into his throat. The GI doctor prescribed a new medication that should coat his esophagus so it doesn't burn, and that it may take time for the Nissen to completely prevent reflux. We all felt surprised that he is having reflux so soon after this surgery. 


October 17, 2020

Doing Better




Azer is doing ok today. He is very sore, especially where the incisions are. They are keeping his G-tube venting to relieve some pain in his stomach. They are trying to switch him over to oral pain medications from IV medication, but his pain levels are still high. He isn't using the vest yet during breathing treatments, but he was able to walk around a lot more than yesterday. They are restarting his Hypertonic saline. 

He had to wait a while to try out some soft foods. They had to clear it with the speech therapist first before he could have anything beyond ice chips. He isn't very hungry, even though a lot of things mentally sound good. His G-tube feeds seem to be causing pain, but he was actually able to eat some mac and cheese this morning. 

Overall, he's doing a lot better than yesterday, even though he's still in quite a bit of pain. 



October 15, 2020

Surgery Done

The ENT doctor finished his part quickly. He injected some gel in the area where the cleft is to temporarily swell it up. This gel will get absorbed in a few months. If the problem returns, Azer may need further surgery.

The Nissen surgery went well. He has 5 incisions but the surgeon didn't need to move his G-tube, which was Azer's biggest fear. He won't be able to eat solids for a while, but he can start on liquids and soft foods tomorrow. 

He is in recovery and doing well.