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.

Admission Day 2

Yesterday, they were able to start Azer's IV easily. His electrolyte panel turned out to be normal when he was admitted, despite how little he has been drinking. He has had hydration fluids running all night long. He was able to eat some dinner before his night feed was started. They also started an IV antibiotic to help his lungs out.

Azer's night was rough. Around 7pm, his fever and headache came back. His head hurt so bad it was difficult for him to cough all the mucus out during his breathing treatment. They had to get in another breathing treatment for the day, which unfortunately ended up being around 1:30am. His fever spiked again around 4am, and had to stop his night feed just a little early due to nausea. He has been holding down his formula despite having reflux this morning.

The doctor is happy with how Azer presents this morning. The decision of when to go home has been left up to us. The doctor agreed it can be scary to deal with these fever spikes at home while worrying whether he's hydrated enough or not. We have opted to stay a few days to make sure he's getting better before going home on oral antibiotics.

Watching Dude Perfect to pass the time

Clinic Day

About two weeks ago, Azer was stilling having reflux issues, so the GI doctor decided to switch him from bethanechol to reglan which can be used to treat gastroparesis. While it hasn't made the reflux/vomiting completely go away, it has helped significantly. Currently, he has only been having food come up if he is running or playing aggressively. The GI doctor said there is little they can do about that, because most of what is in his stomach is usually just formula, and it is easier for liquid to come up than solid food.

So, yesterday, both the GI and Pulmonary doctors were very pleased. He is now 95 lbs, which puts him around 60th percentile for weight. The ideal weight for a CF person is 50%, so we are doing fantastic. On the growth chart, it looks like a straight line up.  His height is finally starting to creep higher above the 10th percentile. It is moving slowly in the right direction. When the pulmonary doctor came in, she said that the GI doctor was grinning out in the hallway. His weight is high enough now to have to move up to a higher strength of enzymes and he hasn't seemed to have as much constipation since we started the Reglan.

His Fev1 was only 83%. However, the doctor said they now have a new computer system they use for PFT's. She showed us based on the volume of air he blew out, that his total volume is increased compared to last time. She believes his Fev1 was actually in the 90's because of this. I was grateful for her taking the time to explain and compare the test. She listened to his lungs and she said he had great airflow and no wheezing at all. She mentioned that the pushing technique I do after CPT helps clear the mucus out of the smaller airways, so on we must continue!

Clinic Day

At Azer's clinic visit three months ago, the doctor noticed his growth was starting to plateau out. Since then, he has been doing 5 cans of formula a day through his G-tube instead of 4. Three at night, one in the morning, and one when he gets home from school. He gained 4 lbs in 3 months, and grew almost a whole inch. I believe it's working unless his long hair is adding to the weight!

He got a few colds over the last few months, and the last one just seemed to stick in his lungs. His Fev1 was down to 81%. He has been junky for weeks. The doctor is putting him on oral Bactrim for 2 weeks unless he has cultured something that would need different treatment. They also tested his IGE level again to see if it's up. I'm really hoping not. I feel like the last ABPA took so long to treat, and he was on Prednisone for months! Hopefully the oral antibiotics will get his lungs feeling better again. He commented recently how much relief he gets from manual CPT and running, so we have been doing both without fail! 

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....

Reflux Isn't Cool

Well, last night, the bag of formula for his night feed got a clog in it somewhere, somehow. All I know is, I just couldn't get it to run anymore past 10pm. So I brought in a new bag, and filled it with new formula. It had already been running at least one hour, so he got a little extra formula, but not that much.

Usually his night feeds run until about 3-4am. Because of the clog problem, his feed finished at 6am, which is the usual time we wake up for school. He sat up, and told me he could feel the liquid in his stomach coming up, higher and higher. He took his enzymes and morning medications with water, and he kept drinking water, because usually it helps keep the stuff in his stomach from coming all the way up. It didn't work this morning. I'm not sure how much of his feed he lost, but luckily he was able to get it in all in a trash can, so there were no messes. Yay...

So, I waited an hour, and just before we left for school, I gave him his bolus feed. He was keeping it down fine. While I was pushing the formula through, I noticed his Mic-key button looked loose. From time to time I check to see if the balloon is missing water. So, I laid him down on the floor, and checked, and there was very little water in the balloon. It's a wonder it didn't leak around the stoma. Well, that button is still the original button they put in when he had his G-tube surgery in June. So, I figured it was best to just change it.

So, I told him I'm going to put in a new one. We have discussed it before, so he knew how it was going to be done. I walked out of the room to go get the kit that includes a new button and gauze. When I came back, he was all in tears. He was afraid it was going to  be very painful. I was afraid I wasn't going to do it right, but I tried not to show it. So, I made sure all the water was out of the balloon, grabbed a towel and pulled and it slid out very easily. I think it came out so easy because there was a bunch of mucus around it. I was kind of fascinated at Azer's "breakfast" bubbling out of the stoma. It's kinda cool in a gross way. The new button slid in just as easily, and I inflated the balloon, and flushed it with water to make sure it was in properly.

Azer was said it didn't actually hurt, that it just felt weird. I can't even imagine how that feels. The whole process took less than a minute and we were out the door. Around lunch time, his teacher told me he was showing it off, going, "Look, I got a new one!"

Back to the reflux. He is keeping water with him all day for today. I wish he didn't have to suffer like that. It's bad enough to feel it constantly shooting up, but it's just no fun to throw up.

Oh ... this is the old button. A brand new button is all clear, so I'm guessing the stomach contents change the color of it over time.

And here it is with the balloon inflated. It still inflates, I think it might have had a slow leak.

A Little Food, A Little Formula

Well, since I started the new bolus feeding (one and a half cans during the day time), he began to eat next to nothing. For a few days, he literally had nothing by mouth. Not even a glass of water. Everything was going into the tube. So, to ease my mind, I called the docs Thursday. The plan is to give a half can in the morning, and a half can in the afternoon. So, I tried that yesterday, and he actually had a few bites during dinner and a glass of milk. So, I'm hoping we can find middle ground, where he gets enough formula to gain weight, but not to the point where he can't enjoy any food.

Who knew it could be so complicated to gain weight? G-tube does not equal simplicity!

Merry Christmas and Clinic Visit

We had a clinic visit yesterday. Pretty close to Christmas hu?

The good news and the bad news. The good news is he blew his very hardest on his PFT with very little coughing and his best FEV1 was 90%. His first blow was 85%. I am very relieved by that. So it seems that the Hypertonic Saline and the Flovent are working.

The bad news: he lost two pounds. He has only been eating a few bites during lunch and dinner. He has been eating so very little. He just has nearly no appetite. I just don't know what to do to fix it. Even with all his favorites, nothing seems to stimulate it. I know he tries so hard to eat what he can. I suppose there is only so much to be expected.

So... the dietitian decided to add this to the plan. A bolus feed of a can of formula for "breakfast", and a half a can during lunch, and then let him eat what he feels like during dinner, and then doing his nightly feed as usual. So, I'm trying to stick to a "feed" schedule even during Christmas vacation.

I want to wish you all a Merry Christmas, and I hope the ones who need to gain weight, gain. And the ones who don't need to gain weight enjoy their meals for the ones who can't.

Less Formula Again

Well, since Azer started the 4 cans, he was barely even eating one meal a day. He just had no appetite (no wonder with a liter of formula a day right...). There is another problem that's been occurring since we've upped the feedings. In the morning after the feedings are done, he experiences reflux more than I've ever seen. He has to drink sips of water to prevent himself from throwing up.

So, last night I decided to put him back down to three cans. And today he had three small snack-ish meals. Yay food! And no reflux in the morning. So, 3 cans = one happy kid.


Only two more weeks until school starts. I feel sad about it, after spending the whole summer having fun with them. Lots and lots and lots of swimming.

More Formula...

So, remember in the last post, I had tried to increase Azer's enzymes, and it caused him to be "vomiting" over the toilet for like 30 minutes? Well, everytime I try to increase his enzymes, the same thing happens. So, the doctor said that perhaps his weight needs to be higher in order for his body to handle the higher dosage of enzymes, so, they want me to give him 4 cans of formula instead of 3.

It's going ok so far. Sometimes, when we wake up in the morning at the end of the feed, he will feel nauseous, but nothing comes up. He seems to be absorbing the 4 cans better than he did with the 3 cans (odd?).

His appetite ... if that's what you want to call it, has gone into hiding. Well, I suppose I shouldn't expect too much when he's getting almost a liter of formula all night. I haven't been forcing him to eat at all. He'll eat a small amount around dinner time, but that is it. So, we're talking like one slice of pizza, one dollar menu size burger, that amount of food. Not great, but not terrible I guess. He's happy, and has lots of energy, and it looks like he's gaining weight. He's definitely getting taller!

The kids have been swimming almost every day at water parks and swimming pools. Their swimming has improved quite a bit. This year, they can jump of the diving board, and they can do somersaults in the water. They are getting much better at swimming along the bottom of the pool too. I'm proud of both of them.

It's been a great summer so far!

Home

We are home now. It's been an adjustment trying to figure out how to schedule everything. He did fine with the 2 1/2 cans of formula last night, so tonight it will be the three cans, which is as much as the doctor wants to give him for now. I think Azer needs some enzymes at the end of the feed because he is still having floating stools.

We are staying on the Pancrecarb for now, until next week. Then, we will try the Zenpep again. I am really nervous about it. I really hope he doesn't start throwing up again, because that was the whole reason we went to the ER in the first place.

Tomorrow, if it doesn't rain, Azer's baseball team has a championship game right next to the Rangers stadium. I will take him and have him sit in the dug out. I know he really wants to play, but we need to keep him a little less active for another week. It's hard to imagine just 5 days ago, he was having a hard time getting out of bed. Now, it's hard to keep him from running and jumping and climbing!

Getting there

It looks like we'll probably be going home on Monday! Yay!

Azer had very little pain yesterday. He was walking around normally. Maybe once every few hours, he had some pain, but I think that's because he was moving around so much. His baseball coach came to visit him, and Azer threw a ball back and forth. We also saw Reema yesterday (hi Reema :) It was so good to see her after almost a week! She misses her brother a whole lot.

Azer was constipated yesterday, which is totally normal for having taken morphin. Plus, he hadn't been moving around much for about two days.

It's good to have the old Azer back!

We got the pump we are taking home with us. They delivered it yesterday here in our room, so I've been learning a lot, and learning how to use the pump, and how to hook Azer up. He has been tolerating the overnight feeds so far. They are running for about 10 hours. Last night he received a little more than a whole can of formula. Tonight, they will try a can and a half. So, I guess I will keep increasing the amount at home until we reach 3 cans a night.

The pump can be dropped with no harm from 3 feet in the air, and it can also be washed with soap under running water. It's only like 1 pound, and the battery can run for a whole night without being plugged in, which is pretty cool. They also delivered a IV pole to us, but it's light and easy to push around.