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!

First Day Home

We've been trying to do breathing treatments every 2-3 hours. Azer can only tolerate 2 minutes at a time on his chest. CPT is causing shooting pains going to his shoulders. Today, he says that it is getting harder to breathe that yesterday, and feels like his lungs are getting worse. His lungs definitely sound much noisier than yesterday, and he is producing more. I really feel like the largish spot on his X-ray may have been pneumonia instead of just simply mucus plugging.

After sending a semi-panic stricken email to the CF clinic, he will be starting steroids for the next week. Hopefully by the end of the course of steroids, the antibiotics will really start to kick in! 

CF Clinic - Sick Visit

About two weeks ago, Azer seemed to have caught a virus. While the rest of his body recovered, it seemed like his lungs did not. In the evening, he was exhausted, after doing athletics at school and then baseball practice after that. It just felt like his breathing treatments weren't enough. He felt like his lungs were full of mucus, even though he sounded relatively clear when he coughed. His stomach has been full of mucus, which has been making him feel sick to his stomach, and definitely hasn't help his appetite.

We were waiting to see if treatments alone could clear this up, but three days ago, he ended up having shoulder pain when he took deep breaths, or coughed. We knew it was time for a clinic visit.

We were expecting low PFT's but he actually blew higher than he's been this year. He lost a few pounds, but it didn't affect his BMI too much. We saw a new doctor today, who noted that he really hasn't grown much in height this year, and hasn't grown at all since his last clinic visit. Azer will have a growth hormone stint next week and hopefully we will have some answers.

The doctor listened to him, and he sounded perfectly clear. He does have nasal drainage, so she wants us to go back to doing nasal rinses at least twice a day. Hopefully that will stop some of the mucus from ending up in his stomach and lungs.

Azer had two X-ray's today. One for his lungs, and another for his shoulder to see if the pain was possibly coming from an injury. It showed that his shoulder was fine, but that there is worsening in the areas of the lungs that have had consistent mucus plugging over the past few years. It also still shows bronchial wall thickening and bronchiectasis. If you watched this kid play baseball, you'd never believe his lungs looked like anything besides normal.

He will be on oral antibiotics for two weeks. They took a mucus sample as well has a swab from his nose to check for viruses. He ended up having a nose bleed from the swab, for some reason. If the culture shows Pseudomonas, we will be back on Tobi in addition to the oral antibiotics.

Update: The virus test came back as negative, still waiting on the results from the lung culture.

Er Visit

So Thursday, I got a call from the school. The school nurse said he was doubled over in pain. A few minutes later, I got a call from the doctor's office. The results of his ultrasound were complete. She said he has gallstones. After I told her how much pain he was in, they wanted to admit him.

By the time I picked him up from school, he was still in a lot of pain. I had given him ibuprofen and picked up  medication from the pharmacy that is supposed to dissolve gallstones. The pain hadn't subsided at all, so the CF nurse suggested taking him to the ER. Yay, our favorite place, right?

After an entire evening at the ER, and one X-ray later, they found out that he was incredibly constipated. About 30 minutes after they gave him an enema, he was 100% back to normal. So, apparently, keeping the intestines lubricated is extremely important, even though he was having normal BM's.

So, it seems like the gallstones aren't causing any pain, but he will be on the medication to dissolve them for a while, to prevent any complications.

I am very happy that it was a simple fix, and nothing scary like organ damage.

Looong clinic day...

His appointment was at 8:30 this morning, and we arrived there bright and early.


After a 7 hour clinic visit, I don't really know much yet. Apparently, his gut area (intestines, I'm assuming) has been hurting much more than I thought when he eats. The area where his liver is has also been hurting. They did an ultrasound on it, and that was painful for him. That area is sensitive to the touch. So, I'm hoping that his liver is alright, and that it is just gas and constipation that is causing so much pain. They also are running blood work to see his how his liver function is that way.

So, as usual, he doesn't tell me how much pain/discomfort he is in. If his liver has been affected by the anti-fungal medication, the medication will either be discontinued, or he will be given medication to improve liver function.

I am praying that his liver hasn't been affected, but I know that if it is, that it can heal itself relativity quickly.

As for his intestinal pain, he is probably constipated, which is part of the problem. In CF, all mucus secretions in the body are thick, and don't help the body. So, in his intestines, even if he has loose stool, there isn't any mucusy secretions to help it go through. So, oddly, constipation can happen very quickly, even if he is having a bowel movement everyday.

The second issue with this intestines is that if you have ever been on antibiotics for a long time, you can develop C-diff, which is a bacteria that can take over when all the other bacteria in your gut has been killed off. It is treated with guess what ... more antibiotics.

He is still on steroids  which, I think, has been affecting his mood somewhat. It can't be easy to be in pain every single time he eats. I'm ready for things to get back to normal, CF wise...

Emotions... argh...

Just a quick little note mostly for myself to get it out.

I've done it at least 10 times at this point. His G-tube button looked loose, so I checked to see if the balloon had enough water in it. It was low, so I had to pull the button out to check the balloon to see if it was leaking. When I pushed it back in, it didn't go back in so smoothly, and it was a bit painful for him. I did not show him that it hurts me just as much. It usually doesn't affect me, but it did this time. Maybe because it was me that caused the pain, in a way.

That boy can get on my last nerve, but it rips my heart to pieces when he suffers. I know life is not meant to be painless, but when the pain is caused by CF, even indirectly, I want fix it for him.

Getting better slowly

Yesterday was pretty rough. He couldn't urinate while sitting in the
bed, so we carried him to the toilet. He seemed to be in a lot of
pain, but he walked back to bed by himself.
Last night was a little rough. He cried off and on through the night.
He is on pain meds, but not morphin. He was able to slowly get out
of bed this morning so we could get him cleaned up. He is very mucusy
today. It hurts him to cough, but a lot is coming up. Hopefully he can
get a breathing treatment soon. He's going to be off the vest for a
while, so it's CPT for a while.

Azer's Hospital Admission

For the past few weeks, Azer has been having stomach pains. His BM's have been looking more ... "normal". The doctor said he is probably constipated and we started giving him some Milk of Magnesia. His stomach pains seemed to go away, so we thought that was the end of it.

Now, his stomach pains returned, along with shoulder pains. This afternoon he got a fever. Now it is the evening and his fever is up to 103 degrees. I was debating taking him to the ER, but his CF doctor says if Azer should be able to wait until tomorrow morning, and then take him to the pediatrician.