The Week After Sinus Surgery & ENT visit

The first week was definitely challenging. CPT was difficult, as every 30 seconds or so, he had to sit up and cough out more blood and mucus. Just coughing in general hurt his nose and face quite a bit. He was constantly oozing blood for the first three days. Even though we were assured this was a normal consequence of the surgery, it still is concerning to see your child coughing up blood.

He wasn't eating very much, and it seemed he lost enough weight to cause his G-button to start leaking, so we upped the formula. After the Prednisone really got in his system, he started to become very hungry and ate.

Doing the nasal rinses were really hard the first week. He could only do a little bit at a time and the only way to finish the bottle of nasal rinse in a day was to do a little every few hours. But as the week went on, the swelling began to subside and he was able to do an entire bottle at a time. The best time for him to do it is in the shower. The hot water seemed to loosen the scabs enough for them to come out on their own.

I think we were all very grateful he was on antibiotics for the week, as all that blood was in his lungs, and it took almost a whole week of consistent treatments and hand CPT to get it out. After a week, he started to sound very clear. We had great weather around Christmas break, and so he spent a lot of time outdoors being super active. That also helped clear his lungs, and as a result, we could start backing off on the treatments.

As for the main reason for the surgery, his sense of smell which has been MIA for most of the year has come back! He has been enjoying food much more and it has definitely improved his quality of life.

Yesterday was the follow up visit. Thankfully, ENT noticed on his notes he had CF, so we were taken back to a room quickly. First the doctor removed the stitch. Apparently there was only one and it was on the left side. This didn't hurt at all. When he pulled the splints out, this was a little more painful, as his nose is still tender to the touch. Azer could immediately breath better.

The assistant then brought in a syringe with a nasal attachment at the end. She said it had numbing medicine in it. Azer had to stiff the medicine up each nostril. He said it tasted horrible, like hand sanitizer. She let him sip some apple juice periodically to help with the taste. They left for a few minutes to allow the medicine to take effect.

We were then taken to a different procedure room, which had a machine set up with a scope, suction, and camera. The doctor carefully fed the camera up each nostril and pulled out a large amount of scabs. This was painful mainly when the doctor had to push on the septum area, and also when the scabs were pulled loose. The doctor was pleased with how it looked, but said there was still a lot of inflammation, and wants to see us back in a few weeks for another round of suction.

This appointment ended up being in the late afternoon. We had had a bit of snow flurries which ended up sticking to some of the roadways. The roads out of Dallas didn't seem to be treated at all, and it took about 2 and a half hours to get home!

Clinic

Yesterday was the appointment where they did all the annuals: annual bloodwork, X-rays, fasting glucose test, bone density, and a deep review of his care. We were there for about 5 hours. While exhausting, it is necessary.


So, he had been fasting since midnight. It seemed to take quite a while to get into the labs, so we went to X-rays first. After, they did a blood draw for his fasting blood sugar and many other levels, including vitamins.

Shortly after we got into our clinic room, he was instructed to drink several cups of the glucose drink.


His weight was 108, which is the same as last time. I told the GI doctor, it has been difficult to withhold the 5th can of formula, but his BMI went down a little, so she's happy with where it is. He grew an inch since February. The GI doctor wanted to know a little more about our Endocrinology visit. She said that the Dr. we saw is on the more conservative side of growth hormones. Our GI doctor said that in about 6 months, if he's still growing slowly, and not catching back up with his genetic goal, we can see another endocrinologist that is starting to take over more of the CF kids.


His G-button has been feeling tight - again! - so a few weeks ago I had to take some water out of the balloon. This is what the balloon looks like. This gave him a little more space between the button and the stomach wall. Since then, it has been feeling better, but the skin around the stoma has been very dry and itchy. They gave us what is essentially diaper rash ointment (zinc ointment) and some special gauze to use to protect his skin when he's swimming. They said perhaps the chlorine in the water is irritating it.



Since he's gained weight, his stools have been more fatty. When people with CF gain weight, they need a stronger dosage of enzymes, so we can increase his enzyme dosage for large meal times to see if his stools improve.


He only blew a 85% on his PFT's. His chest X-ray was improved since last time. Even though his X-ray looks good to the Drs, it still makes me sad to read the radiologists report: that there is wall thickening and bronchiectasis permanently in his lungs. It seems that lately, there is plugging in the same places that just doesn't go away.




The pulmonologist showed Azer what his X-ray looked like before and now and he was able to see how there wasn't as much cloudiness as there used to be. She listened to him, and while he sounded clear, she made him blow hard a few times, and she heard some wheezing. She thinks that his lower PFT's might be due to his asthmatic components, so she wants to add an extra inhaled steroid to his treatments to see if his breathing improves.
Two hours later, they retested his blood sugar. They now do this two ways, one by the prick of the finger, and the second sample is taken from his arm which is sent down to the lab and is considered more accurate. The technician had tried digging around at his veins twice and couldn't get any blood. The GI doctor asked Azer if was possibly dehydrated. He was... She recommended that he over-hydrate the day before labs.
Nearly every doctor, nurse, and medical student that came in stressed to him the importance of keeping his sodium intake high during the summer. The pulmonologist told Azer how she has had to admit other people with seizures because of low sodium. While he didn't have muscle cramps this time, he did experience some about a week later, and they were very painful. When he doesn't drink a sufficient about of gatorade during the day, we run it through his G-tube, and he walks around with it in a backpack for a few hours.
It has been about a year since his last scoliosos X-ray, so the doctor put in another order for it to get before we left. When we tried to check in for the second X-ray of the day, we were told they only did it later in the evening. By then, we had already been there for 5 hours, and we were exhausted and hungry, so we decided to come back for those another day!

Since I was there, I was able to ask the pulmonologist more about the bone density test results. She said that, while it does appear he is on the lower end of the scale, they don't know yet if this is considered normal for a person with CF. They are still collaborating with other clinics for their data. This is a relatively new test they are doing, since they have noticed that since people with CF are getting older, they are having to address osteopenia and osteoporosis earlier. The dietitian came in and recommended that if his vitamin D levels are below 40, they will increase his dosage. They said he is getting more than enough calcium from his formula. The GI doctor noted that he is very active already and with his running, it should be enough exercise to maintain bone density. She said that repetitive exercises such as running and jumping help build and maintain bone density. She also said that the clinic is working on getting a physical therapist on to the staff to help addressing exercise.

New Mic-key Button Size - Again!

So, for about a month, Azer continued to have pain around his stoma. He said it was in the muscles around it. The last time he felt like this, we had to put in a larger sized Mic-key button. We managed to battle the infection of the stoma itself with the oral antibiotics, and special gauze they gave us. However, the pain remained when he coughed, and when his stomach was not completely full. In May, the ostomy nurse didn't think he needed a bigger size. I could tell he was getting tired of dealing with this pain, so we were able to get a quick clinic visit with the ostomy nurse again.

Azer explained to her how it felt, even though the button could still turn freely. She left to go find the next size up, but it was unavailable, and the one she did have was a whole half size longer. She agreed to put it in him, and see if we have any leakage.

Within seconds, he was pain-free. The whole drive home, he was relaxed and kept commenting on how much better it felt. I guess he didn't realize how much discomfort he was in until it was relieved!

This is what happens when he sits down lol

Bigger Size

Last week, he ended up coming down with a virus that came with a fever and cough. He was feeling pretty bad. Luckily it was short lived, but as it frequently happens, the virus leaves, but the congestion stays. We have been doing short sessions of manual CPT 4-5 times a day to try to help him clear the extra mucus. It's hard to say at this point if he won't need antibiotics soon, but it definitely helps him breathe better.

G-button Infection

So, Azer's lung culture came back as abundant Staph that grew two colonies. Despite this and the not so great chest X-ray, our pulmonologist wants to hold off on antibiotics since Staph is so common, and if we over-treat it, it could become resistant to antibiotics eventually.

Despite using gauze around his G-button and keeping his stoma very clean, it has continued to be wet, red, warm, painful, and leak pus. The GI doctor has concluded that it is infected and has prescribed antibiotics to treat it. They also are trying to get a pharmacy to send us some special dressing that will promote healing. We don't know why his stoma got infected, but apparently it's not that uncommon.

Sorry for the gross picture, but when I searched for a mildly infected G-tube stoma, I couldn't find a whole lot. The one I did find was very helpful. Usually, he doesn't have any pink tissue around it, and there is no discharge.