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.

Update on Sick Visit

So today was mostly just a follow up for PFT's to see how his lungs are since he's been on steroids and antibiotics for a few days. His first few blows were exactly the same pre-albuterol last visit. They tried a different blowing technique which apparently works well for him when he's sick, and he blew just a bit lower than his post-albuterol test on Wednesday.

So his numbers look good, but numbers look good on paper, but don't always reflect the patient. Azer told the doctor that his lungs still do not feel good. He said they feel the same as they did before steroids. Usually, steroids make him feel a lot better quickly. The doctor did note that he's only been on this treatment for a few days, and it may take a little longer to start feeling the effects. She told him to have fun on our family vacation, and that if when he gets back, even if his PFT's are up to nearly normal, if he still feels like his lungs are sick, she can admit him to get his lungs back to normal before school starts. The doctor added that she's adding a test to his lung culture to test for non-TB mycrobacterium (we really hope it's not this, as it can take over 6 weeks for the culture to come back and the treatment is very intense and long. This bacteria grows very slowly, and treatment for it can take up to a year).

CF can be overwhelming and can really take over your day if you're not careful. Azer definitely felt those pressures when he was away for a week. Even at home, with not much else going on, it can be tough. I thought this picture really demonstrated him trying to fit everything in so he could go be a teenager. He was doing his inhaled Tobi podhaler and giving himself his growth hormone shot at the same time.

The Day After Surgery

Yesterday started out pretty tough. He woke up in the middle of the night panting and unable to breathe easily. Some albuterol helped a little, but it seems that all the bleeding from his sinuses ended up in his lungs. At first, he sounded so bad, and was having such a hard time breathing, I was tempted to go ahead and bring him back to the hospital. We put in a lot of work yesterday, doing hand CPT every couple hours. It started out pretty rough. Coughing and laying down hurt his nasal area. Most of the day, he was coughing up a lot of old blood and mucus. Luckily, his nose wasn't bleeding much at all, so we were able to do his normal nebulizer medicines.

Because of those splints stitched inside to his septum, nasal rinses have been challenging, and painful. The doctor told us that if we didn't keep trying to do the rinses, the blood in his sinuses could scab over and dry and cause scarring. It took most of the day to use one bottle up, but it did flush a lot out.

He ate very little, so we did extra formula boluses to supplement the calories he wasn't eating. He felt nauseous after most boluses so he took it easy for most of the day.

Later on in the afternoon, the mucus he was coughing up was becoming less bloody, and more clear. He definitely was starting to feel more like himself. He slept sitting more upright last night, so while this is more comfortable for his head, all the drainage ends up in his lungs. So, we plan to continue with frequent hand CPT sessions for the next week.

Bummer CF Appointment

The doctor said Azer looked healthy and great. It's just those darn numbers.

He lost a whole pound. But, I suppose we can blame that on how much running we've been doing. Plus, he hasn't been eating but one meal a day. Lunch time is only a snack.

His FEV1 was only 78% today. After the doctor listened to him (his lungs sounded crackly and wheezy), the doc sent us back to do a breathing treatment. I don't remember the name of the medicine Azer inhaled, but it basically was a strong type of Albuterol. We did a second PFT test 10 minutes after that, and his FEV1 was 77%. So, clinically, there was no difference made by the medication.

The doctor said that even though his allergy tests did show he was allergic to Aspergillus and lots of other things, it wasn't high enough to make the doctor think Azer needs allergy shots. So, we are going to try Flovent three times a day, instead of twice a day.

I've always said Azer gets leg pains during exercise. Sometimes it seems like Gatorade helps, most of the time, it doesn't though. Sometimes when we run, Azer has such severe leg pain that he cries. It happened at his last baseball game. He was crying because his legs hurt that bad. Time and time again, I've asked the doctors and pediatricians. Nobody has a clue. The pediatricians wrote it off as grown pains, only because they couldn't say it was anything else. Our doctor said today that it was possible Azer has arthritis. Arthritis. That word freaks me out. The good news is, the doctor said Cystic Fibrosis related arthritis isn't known to cause degeneration of the joints. Ibuprofen is supposed to help a lot. So, I guess I should plan on giving him ibuprofen before any physical activity.

Otherwise, the doctor was very happy with Azer's overall appearance, and he wasn't too concerned about  Azer's noisy sounding lungs and weight loss. I wish I could say the same about myself!

Jogging

For the past few months, we have been religiously walking. After Christmas, we started to add a little bit of running in it. Today was the first day we started an actual plan. I thought it would help his PFT's and maybe help clear his lungs.

So, today was day one of the actual plan we got from Ronnie's site. Thanks Ronnie :)

http://runsickboyrun.blogspot.com/2009/07/started-new-running-plan.html

We were following week 2 of the plan, but could not run for 2 minutes straight the last 3 times around. One thing I just don't get his why he coughs so hard after running for a consistent minute. I hear mucus coming up, and he tells me he can feel it moving around. But, it's almost like the air irritates his lungs,  because it seems like he just can't stop coughing. I recorded a little bit of it at the end. We did an Albuterol at the end, but he still coughed for about 15 minutes longer. I'm hoping when we get the Flovent next week, it will help ease the irritation, if that's what causes this.

Otherwise, he seemed to feel normal when we were finished.

I slowed his feed down last night to help with the reflux. He never eats that much on the weekends because we wake up late-ish. As in, between 7-8am. Someone asked me yesterday what I had planned for the weekend. Funny. It feels like there is just not enough time in the day for meals + bolus feeds. It's a can of formula for breakfast and he's too full to eat anything. At lunch time, he tries to eat a few bites of food, and then a couple hours later, it's another half a can of formula. Then in another two hours it's dinner time, and then it's time for nighttime feeding.  I feel like all I'm doing is injecting stuff into this kid's stomach all the time.

Well, time to stop typing ... time for night time feeding and breathing treatments! Yay! I get to watch Spongebob for a whole hour....

Good Clinic Day

So, like others that expect to see great results after getting a g-tube .... tada ... he gained two pounds in about 4 weeks. He grew 2 cm too!

His PFT's were kind of low today, his FEV1 was 75%, which is low for him, but the doctor thinks perhaps it was low because he had some abdominal distension. Otherwise, he overall looks really awesome!

Well, we aren't just happy because of a great clinic day. Our friend from Child Life had just gotten a message that someone donated some Rangers tickets. Guess what lucky kid gets to go to a Rangers game this weekend?

Yep.

We got some other "goodies" too. To quote a joke from a much earlier blog post I made, "You know you've been dealing with CF too long:  When your after clinic routine at home looks like a hazmat exercise." That one still makes me laugh.



The respiratory therapist gave us an Acapella today. We can attach a nebulizer cup to it so he can take his Albuterol while doing that.

Today, during clinic, I was asking the nurse where I can get more syringes for flushing his Mickey button. She said I can find them at the drug store. Azer quickly came up with something funny: "The drug store? Oh ... so I take drugs, hu? Lots and lots of drugs! I'm all drugged up!"