Compliance, Virus and Admission

This has been quite the difficult month. Azer ended up getting a virus which made him pretty sick with fevers. He went to clinic to get checked out. Unfortunately, he hasn't been doing breathing treatments as much as he should. It is difficult to make time for treatments when he wants to be out with friends and when he comes home from work late at night, especially when he says he doesn't feel that bad. The clinic has been trying to work with him on ideas on how to fit it all in, and what can be cut out as long as he tries to stay compliant. His lung function has been steadily declining because of not taking medications and doing breathing treatments consistently. 

Unfortunately, this is what many adolescent/young adults with CF go through. They choose life, friends, work over CF, and ignore their health until sometimes it lands them in the hospital not realizing what they are doing to their body. Ronnie Sharpe went through this as well. His blog post here is especially helpful. 

http://runsickboyrun.blogspot.com/2016/01/being-parent-to-teenager-with-cystic.html?m=1

He hasn't put on any weight in quite a while. It has been stable, but they believe his body has been compensating by using his muscles as fuel. He has been eating very well, but the doctors don't believe that he can gain weight without using his g-tube. They said he has been experiencing "starvation brain" from not doing his G-tube feeds. 

The doctors recommended that he get admitted to the hospital, as his lung function fell even more this time. He felt that he might be able to avoid the admission with oral antibio

tics and steroids, but late that night, his fever spiked, and he went back to get admitted.

They had an EKG done as one of the medications can rarely cause heart rhythm issues. The EKG results seemed to indicate that the right side of his heart was enlarged. They next day, they did an echocardiogram. It showed everything was perfect with his heart. The pulmonologist said that the likely reason his EKG was interpreted that way was because Azer has lost so much weight, that it makes his heart appear too large for his body. 

The hospital started him on the usual antibiotic for his MSSA. His lung cultures came back that he is now culturing two new bacteria: psuedomonas and achromobacter. They added two more IV antibiotics. Shortly after they added the new IV meds, Azer began to have mental confusion. He has trouble finding words, is having trouble remembering many things. They had the psychiatric team come and evaluate him. They ran a few tests. They thought perhaps he was showing signs of depression again. They have started him back on his ADHD and depression medications at low doses to slowly taper him back to theraputic doses. This hasn't helped. He couldn't spell a simple word backwards, or say the months of the year in order. He is having trouble sending text messages, and has to make phone calls. He doesn't remember sending some texts, or some conversations. Doing school assignments has been impossible, as he can't comprehend the words he's reading. After a week of feeling like his concerns were being dismissed, I finally stepped in and said this is not depression or normal for him at all. After looking up medication side effects, I found out that one of the IV meds he's on can cause temporospatial disorientation. The CF pulmonologist that is on the floor this week finally recognized what Azer is going through and validated our concerns. It seems to be caused by basically a perfect storm of the IV medications he's on. It seems they want to continue both of them for double coverage of the pseudomonas, even though it is causing distressing side effects.

His glucose levels have been a little high, as well has his liver and kidney enzymes. He has been working hard on keeping his fluid uptake up, he is even above 2x what he should be drinking, but all the levels are still kind of high. They aren't really concerned about it as it's temporary from the medications he's on. 

His lung function has been slowly going up over the week since admission, but yesterday it went down a point. 

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.

Day 2 in the hospital

Azer ended up having to get stuck multiple times in the fingers and had several butterflies in his hands. The poor nurse was trying to get blood to test his potassium, but he kept clotting and she was having a difficult time.

He finished his night feed for the first time in a few days and held it down. He also did his morning feed and feels pretty good. 

We were a little disappointed that we asked for hand CPT last night, and the RT still used the Vest. So, this morning the RT for today was questioning why we did hand CPT. Both Azer and I said the Vest does almost nothing to help him clear his lungs. The RT had me show him how I do CPT and was impressed. He recommended something called a IPV as something Azer could possibly use in college. I've read about it before, and sounds great, but when I asked a doctor about it, they said usually it's not prescribed for home because of the risk of lung bleeds. 

Our dietician came in and will give us a list of foods that are high in potassium and also give us a daily fluid gole. She believes this incident might have been from "the perfect storm" conditions. We had a cold front, and then it's been suddenly hot for the past week. The dehydration probably started from last Thursday's baseball game, Friday he had a tough athletic period and had to run 8 laps in the afternoon heat, and then Saturday he pitched almost the entire game. He then played outside for quite a bit of the day. For a few days, he hasn't been able to do much of his formula feeds, has been nauseous and has vomited a few times as well. All these factors likely contributed to his dehydration. 

One of the nurses came in and said that Azer's blood work from today compared to yesterday's is strikingly improved.  The results of the EKG weren't too concerning, but his QT was prolonged. The nurse also said Azer's creatinine and BUN was high yesterday, making his kidneys work hard. They said that his blood counts were high because of it being so concentrated. So, Azer was definitely in a dangerous place, and I'm glad we brought him in. We might be able to go home tomorrow if he keeps looking good, but we are definitely going to have to work on keeping his potassium and hydration up especially if he is going to be outdoors.