July 31, 2020

Home IV's Going Well



Home IV's have been going pretty well. The hospital staff adjusted the schedule while we were there to make it easier on our sleep schedule at home. It isn't too difficult as he only is on one IV medication. 



So far, all the cultures from both the sinuses and lungs have come back negative for everything except for MSSA. Some of the cultures are still pending for the next few weeks, but so far it looks promising.

Nasal rinses have been getting a lot easier for him. The bleeding is pretty much gone now, and he is able to breathe through his nose finally. He's not sure if the dissolvable packets are still there. He has been coughing considerably less. 

Azer had a dressing change today at clinic. The first one is always the most painful, but it wasn't too bad this time. The plan is to do one more week of IV antibiotics, and to see the ENT doctor in a few weeks to make sure everything is healing well. 

July 25, 2020

Going Home

So far all Azer has cultured is MSSA still, so the plan is to continue IV Cefazolin for two weeks at home. His nose is bleeding a lot less and nasal rinses are uncomfortable, but the pain is a lot better. He feels like his cough is improving even though his lungs feel full and they sound diminished.

We are still waiting for the final results of the cultures from both the bronch and from the sinuses. Hopefully we will get all the answers we need!

In the meantime, Azer is happy to be home, even if it is with IVs. 

July 24, 2020

PICC Line and the Plan


Azer felt quite a bit better as the day went on. He did a nasal rinse, which was a bit painful. The oozing never seemed to end. The ENT doctor who did the surgery came to see what could be done. She carefully suctioned a bunch of blood out of both nostrils. The bleeding seemed to slow down quite a bit after that. She wants him to really try to do four rinses a day, and to hold the sinus steroids for several weeks. Later in the afternoon, another ENT doctor came and suctioned his nose again. The next sinus rinse was painful, but manageable.

So far, the cultures show a lot of MSSA, so they put in a PICC line today, and started a broad spectrum antibiotics. They are trying put in the orders to continue IVs at home, perhaps tomorrow!


He is feeling pretty good tonight and is hungry, but says he can't taste much. We are watching opening day for our Texas Rangers!


Getting Better

Azer is recalling a bit from when he was waking him. The first thing he did when he woke up was start joking. Tommy couldn't be here, as they are only allowing one parent to be with the patient due to Covid precautions.


Azer was in a lot of pain last night, and it took hours for them to get approval to give him something stronger. This was very frustrating and distressing. When he finally took the pain medication, his pain was gone in about 10 minutes and he was feeling good enough to eat dinner.

Azer's oxygen got a little low last night. The RT came in and repositioned him and put an oxygen mask near him. His oxygen is still running a little lower than his normal. He is coughing up globs of blood, and his nose is still oozing, but he isn't in any pain, and is feeling a lot better. They are continuing to monitor his heart rate and oxygen levels today.

They are still waiting for cultures to come back, but it sounds like they will most likely start a course of IV antibiotics. We asked why another course of antibiotics would even work, as he's been on both IV and oral antibiotics so many times this year. They explained that he had one of the worst cases of sinusitis they have seen, and that now that the old infected gunk and polyps are gone, the antibiotics will be able to clear out any remaining bacteria. They also said that polyps and harbor infection and bacteria.

July 23, 2020

Surgery - Post-Op

The bronchoscopy went quickly. Azer's pulmonologist came out after to talk about what she saw. She said his lungs look healthy and clear, except for some mucus and inflammation at the entrance of the lungs. She believes this was from post-nasal drip. She said that bronchs done on CF kids before Trikafta were very different. She said there was usually so much mucus, they'd have to clean their camera frequently, and that they would suction so much mucus out, it seemed endless. So, the Trikafta is definitely helping his lungs! I asked about the possibility of microbacterium, if the effects of it can be visually seen. She said not usually, unless it is advanced. 

They applied some lidocaine to the inside of his throat area, to help limit any agitation that could cause coughing during surgery. This should also help him after he wakes up. They are also using steroids in his sinuses to cut down on inflammation. 

The sinus surgery lasted about three hours. The ENT doctor said there weren't that many polyps up there, some scarring but that he had a lot of dried up mucus up there. She said that the only way to help this not happen so quickly is sinus rinses. She put some dissolvable packets that should dissolve on their own. She hopes that this will help end his constant coughing. 

His nose and throat are really sore, but there isn't too much bleeding, but he is definitely hurting. His oxygen was a little low after surgery so they kept him in recovery a little longer than usual. He is now admitted and being observed overnight.

Surgery

Initially Azer didn't feel like he needed a bronchoscopy, since he feels like his lungs are pretty clear. His doctor came in and explained that since he's going under anesthesia, it is the perfect time to get some mucus samples from deep down in his lungs, that perhaps he's growing a bacteria that isn't coming out when he coughs up mucus. She also said that if the sinus surgery doesn't help and that cough and fevers, it would be more trouble to come back in for another surgery.

The ENT doctor explained she will go in and open up his sinuses more, remove the polyps and clean out all the old mucus stuck up there. They will send the everything for biopsy and cultures.

They are planning for him to stay overnight for observation, and they will wait to see what he cultures before deciding to do IV antibiotics. 

Azer isn't too nervous, especially after his main pulmonologist came in and explained the entire procedure. He said he's glad she's the one doing the bronchoscopy. 

July 21, 2020

Pre-Op Appointment & Covid Testing

Azer has been working on trying to gain muscle mass, to better his chances to play college baseball. It seems to be working, as his weight was the highest it's been this year.

The pre-op appointment went pretty fast. We were previously given all the instructions over the phone on when to stop eating, what medications to take etc. They went over all of this information with him again as well as reviewing all his medications. The CF doctor decided that she would like to do a bronchoscopy during the polyp surgery. It is undecided if he will need IV antibiotics after this, but they will see how he feels the day after surgery. If he does need IVs, he will stay in the hospital for a while, and then we could finish the course at home with a PICC line. 

After the appointment, Azer got swabbed for COVID-19. If he is negative, he is good to go for surgery this week! 

July 20, 2020

CT Scan and ENT appointment

Azer had his CT scan done last week. The ENT doctor scheduled the virtual visit sooner than previously planned to discuss how it looked. She said his septum is still really straight. There was a fair amount of polyps blocking both sides, one worse than the other. She said that surgery at this point is the best option. She said when they remove the polyps, they will test the mucus for bacteria and fungus to make sure he isn't culturing something different than what he usually grows in his lungs.

Over the past two weeks, he has been pretty miserable for most of the day. He wakes up with a constant, deep cough, sometimes to the point of vomiting. He has had a low grade fever most mornings, and even when he doesn't have a fever, he feels chilled. He feels exhausted and sleeps most of the day, until the afternoon. By the afternoon, he starts feeling a lot better, and isn't cold anymore. He asked the doctor if there is anything he can do in the mean time to feel better before surgery. There isn't a lot of options in addition to all that he has already been doing. The CF clinic doesn't want to do additional antibiotics, as he has already been on several courses since the beginning of the year, including the last three weeks. The only possible relief is hypertonic saline in his nasal rinses. 

Hopefully relief for him comes very soon!