December 24, 2010

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.

December 7, 2010

Doing Treatments

It's either sleep, the computer or a variety of video games to make the time pass.

November 30, 2010

You know your kid is a CFer when...

This morning, Azer said, "I'm the King of Salt!". Only a CF person would get that joke! Between the hypertonic saline and adding salt to his feed bags, he's kind of surrounded by salt.

November 27, 2010

Clinic Visit and More Antibiotics

I hope everyone had a great Thanksgiving! Azer ate a whole lot for Thanksgiving, for the first time.

I took him in to clinic last week, because his wet cough was just not getting better. Better to be safe than sorry, I guess. His FEV1 was 79%. He gained 4 lbs and he grew too! The doc prescribed another round of antibiotics, and we have added Hypertonic Saline and Flovent.

Evening treatment is much longer than before. We have another week left of antibiotics. The doctor said to call back in two weeks if his cough is not better. I'm hoping that his PFT will be better after doing all this.

How does he sleep through that? 

During the first treatment of Hypertonic Saline, Azer coughed and coughed and coughed. I gave him a quick puff of Albuterol after, because he was hacking so much. He has not coughed with it after that, so I think he's tolerating it now. I noticed mucus is coming out easier for him, and he is starting to spit it out.


 My! What good children you are! Reading on your own! (This is a rare event in action, ladies and gentlemen.)


Flexible Reema!



Christmas Time!

October 30, 2010

Throwing up = CF clinic = Tired and overwhelmed

Sunday evening, Azer threw up, around the time when his feed ended. He didn't have a fever, and it didn't look like he threw up much, so I thought it was reflux or something. So, I forced us all to get up for school in the morning even though I was just dragging.

Monday night, he threw up a lot. It looked like the entire feed, but of course you can never tell because of how it spreads out. Well, I took his temperature and it was 102.1. No school. He had a CF clinic appointment Tuesday morning, so that was lucky.

Tuesday I was so tired, I cannot even begin to describe it. I always feel like laughing at other people who say, "Oh, I'm so tired, I went to bed late". Another mother recently told me, "Oh boy, I'm so tired, because I chase my two kids around all day, and one of them woke up in the middle of the night." I'm sure she is tired, but, it cannot be even close to the same kind of tired I was Tuesday.

Azer did his PFT's. His first few tries didn't get him much higher than 60% FEV1. I was about to really start flipping out, but he managed to get an 81% which isn't too bad, since he usually baselines around the upper 70's.

He lost a few pounds, he's around 48 lbs. Not terrible, but I don't get how he can loose weight being on the G-tube.

They looked at his previous throat culture, and it was nothing more than staph, but the doctor felt it would be best for Azer if he did another cycle of Tobi. They also prescribed an oral antibiotic we've never tried before.

Before we left, they did a chest X-ray, just in case. I don't know how that will look, but they said he sounded clear, but that doesn't mean much to me. Once, he had pneumonia and they said he sounded clear.  I believe this is because the air can move around the infected spots and it "sounds" clear.

So we leave the hospital, and drive to a local pharmacy to fill the prescription for the antibiotic. The pharmacist said they don't carry it. She calls another pharmacy and they might have it. So, I drive over there. Nope, they don't have it. I drive to another pharmacy. They say that this antibiotic doesn't exist in the prescribed strength. Great. So, now it supposedly doesn't even exist? I try two other pharmacies. No such luck.

At this point, I'm so tired, I can't even speak straight. It's now evening, and we haven't had anything to eat yet. So, we drive ALL THE WAY back to the hospital, and try the pharmacy there. Yes, they have it. They are the only ones apparently that carry this strange antibiotic. The pharmacist seemed surprised that other pharmacies didn't carry it. It took 40 minutes for them to fill it, but eventually we got it.

By the time we got home, it was about 7:30pm. I just broke down and cried just out of pure exhaustion. I don't know why, but I just couldn't stop crying through the whole evening. The next morning, when I woke up to get the kids ready for school, I looked in the mirror and I looked half-dead.

Well, anyway, I think the antibiotics are working. He hasn't thrown up since we started them. Funny thing: I was reading the label on the bottle of antibiotics. The course is for 15 days, but they only gave me 10 days worth because it expires in 10 days. I have to drive all the way back to the hospital to refill it next week. I laughed out loud at that one, in a sarcastic way.

Thursday, both of the kids had a pediatrician appointment. At the same hospital. Yeah, I'm getting sick and tired of that building. It was a normal well-child appointment. And I never expect the just-out-of-school residency doctors to know that much. But apparently, it seems Azer is spending way too much time on the video games, TV, and computer. In one day, he spends a weeks worth of time watching TV (according to the American Pediatric whatever that tells people how to raise their kids). I looked that doctor in the eyes and I said, what am I supposed to do with him when he's stuck to machines for a couple hours a day? "Well, ma'am, you could sit with him and read books. Or he could read the books himself. His intelligence will be dumbed down by all of these video games." I think my intelligence is being dumbed down by watching Sponge Bob for the past 5 years. But, honestly? Sit there and read books everyday for a few hours a day? In theory, great idea. I didn't know what to say in response so I just smiled back at the doctor and laughed to myself. Of course I read books to my kids every single day. At least 2 or 3 a day. But for a few hours? Umm ... no. Not happening, Dr. Genius.

October 24, 2010

Reading

Azer read two chapters out of a Frog and Toad book all by himself,
without me telling him to sit down and read. ð˜

October 16, 2010

Busy, Busy Month

This month has been very busy. Reema and Azer have had practice and games on the same days. Between school, sports, doctors appointments and treatments, I feel like I've been on the run ever since school started.

I didn't get a chance last week to blog this but, Azer turned 7 last week!

He took that hat off as soon as he could. Ha ha!

Azer has been practicing baseball with me nearly every day, and three times a week with coaches. No, it doesn't tire him out one bit! I think he is doing really well for his first season of coach-pitch, but I hope we are picked up by a good team in the spring.


He is steadily gaining weight, it seems. We have another CF clinic the week after next, so we'll find out exactly how heavy he is this time. He has been doing very well eating his lunch at school, and seems to be absorbing things really well. He is on the lower dose of Zenpep still.

His cough got better. He still seems to have more of a dry cough than I like to hear, but the wetness went away completely.

Ok, I'm off to eat dinner, and then to another baseball game with Azer!

September 30, 2010

Gaining More Weight!

Tuesday morning, Azer's cough just made me feel worried. Like that fear thing popping up, that it just wasn't getting better. So I called the on-call doctor before their offices opened (it's a sure guarantee of getting a hold of a doctor before 4pm). He said to come on in first thing in the morning. So I go rushing around, dropped Reema off at school, and drove straight to the clinic. As soon as I walk in, the nurse told me she ordered a bed, just in case we need it. As in, uh-hu, you might be admitted to the hospital. I'm thinking, yeah, I was prepared for this.

Well, tada! In another month he gained yet another pound. We have a 49ner. We are almost to 50 pounds. He grew and gained, and the doctor was amazed at how great he looked. Azer sounded wheezy, so they sent him to the PFT lab to get an albuterol treatment. His PFT's were 88%, which is better than the 76% last month.

So, we went home with oral antibiotics for 10 days, and oral steriods for 5 days. The steriods have always worked quickly in the past, on improving his coughing. So far, his cough is still wet, but it seems to be clearing. Azer is really happy to have this G-button right now, because the steroids don't taste good at all, and we are pushing it through his G-tube. He is also very happy with the weight gain, and his extra strength he has now. He can pick up his sister! He looks like a big brother now, I think.


September 26, 2010

Almost done with Tobi

So, Azer's appetite has been pretty good. Well, he's actually eating food at meals. He looks really good to me. He looks heavier than another little boy his same height and age that he plays with. It makes me feel so happy that I don't see his ribs sticking out like I used to.

It's kind of cold here today in the lower 60's. Ever since Azer has had that cough, it just doesn't seem to go away completely. I'm worried, because the last three PFT's he's had, he's been in the 70's. I'm worried that maybe he has lost lung function, but I hope it can go back up again. But, I feel like he might need some IV antibiotics to really fix it. I just don't get it. He did a whole 2 weeks of Augmentin, orally. And he only has 4 more days of the Tobi to go. This morning, before his breathing treatment, I could actually hear mucus cracking inside his lungs, without even holding my ear to his chest. After the treatment, he sounded clear, and is not coughing. I'm sure his next culture will be free of Psuedomonas as well. So, I just don't understand, if there is no bad bacteria flaring up, why won't his lung function get any higher? There are adults that have PFT's way higher than him.

Besides everything, they are both doing great in school. Azer does not enjoy homework at all, but we're plugging away at it.


He has been enjoying fall baseball. He's been playing 1st base, just like last year, which he loves.

Reema is finally enjoying some sort of sport. This is her at her soccer game. I had to crop out the other kids for privacy purposes, but it makes me smile watching her get in between big, sweaty boys and getting the ball away from them. She is extremely girly, but doesn't seem shy about getting involved with a little tumbling. Of course, she had to ask if her hair clips matched her soccer uniform. *rolls eyes*

September 9, 2010

Continue with Tobi

Azer's culture came back clear of Psuedomonas, but his doctor wants Azer to continue with the Tobi. Azer's cough has been improving slowly. It has been very difficult waking up in the middle of the night to flush his tube, and to give enzymes at the end of the feed. Then, we have to wake up extra early because the Tobi takes FOR-EV-ER to finish.

So, to make the most of the day, we wake up early on the weekends too. We went to the lake last week end, swam in the lake, rode bikes, and had a picnic. It was a great escape from the "home hospital". Lately Azer looks a lot taller than his sister. Thank you Lord and G-tube.

September 4, 2010

Cough... Tobi Again

So, remember how I said that at clinic on Tuesday, Azer had a bit of a wet cough? Well, yesterday, it scared me a bit because it just sounded terrible. Really junky sounding. I asked the school nurse to listen to him, and she said it sounded like he had good air exchange. I called the doctor, and I thought maybe they would bring him in to look at him, but the he realized that Azer had just started the oral antibiotics on Tuesday, and that it might take more time for them to take effect. His culture still hasn't come back yet as of yesterday. His doctor wanted Azer to start back on the Tobi again. The last time we tried Tobi, Azer had ringing in his ears, but that may have been from the IV tobramycin.

So, we did a Tobi last night, and no problems. Azer said the Tobi makes his mouth taste bad. I just hate it because it takes about 30 minutes to run it, which adds more time onto the treatment time that seems to just run forever sometimes.

I just heard of a new nebulizer called the Trio that can run Tobi in 2 minutes. Maybe I can ask the doctor about it at next visit. It looks like we have to wake up at 5:30 in the morning to get Azer's treatment done in time for school. Fun, fun, fun.

September 1, 2010

Baseball!



Azer's baseball season has been going great. I think he's learned a lot so far. He definitely has matured quite a bit from last spring. His throwing accuracy just amazes me. It's almost been a year since he got his G-tube, and I've noticed a lot more muscle mass on him. I think this contributes to his increased stamina while playing. Just the fact that he can run 3 miles, and then an hour later be running around playing catch is just plain amazing.

Good Clinic Day

Yesterday was a routine CF clinic visit. I had to take Azer out of school as soon as we got there. Took us almost an hour to get to the hospital.

He gained a pound and a half, and grew another half a cm! Doctor said his lungs sounded clear, even though Azer has a wet cough. Azer also has a lot of sinus drainage right now, but most of his class has that as well, so it might be a virus. Azer's PFT's were only 76%. I would have liked to see it higher, but he does have the wet cough, so hopefully that is the reason. Doctor wants him on antibiotics for 2 weeks to see if that will help clear him up. They did do a throat culture (Azer calls it the gag test)

I've been sort of worried about CFRD (CF Related Diabetes) lately, as he has been drinking water and peeing constantly. So, they ran a glucose test on his urine, and it was normal. They also drew blood yesterday, so, hopefully that runs normal as well.

 They have this new medical device called J-tip. http://www.jtip.com/  It is used for other medications, but we like it as when it is used with Lidocain, it causes the skin to be completely numb in about a second. So, I was hoping they had this in the lab before they drew his blood. It dramatically decreases Azer's anxiety about it. But in the lab, the technician said that they don't use it there, because only a nurse can administer it, because it is a medication. I know they have to follow policies for everyone's safety, but it's always difficult to see Azer crying and nervous over getting blood drawn. It was over in a few seconds, though, and he got a little toy and was ready to move on.


Azer was such a goof in the clinic. He was making jokes, and being really entertaining to all the staff. Our Child Life specialist came in and asked him if he'd like her to come to his class and talk to his class about CF. He's thinking about it. Azer is pretty good at telling other kids about CF, but most of the questions revolve around his G-button.

Azer was telling the different people in clinic yesterday that he really loves his Mic-Key button, and his happy he has it. Also, it's always great to hear from a nurse that we are doing a really great job with him. So, yay for a good clinic!

August 23, 2010

1st Graders

Today was the first day of school. Two 1st graders now! Reema was so excited about school all this month. She was counting down the days until school. When I walked them in today, Reema practically ran to her classroom. Azer, while not as enthused about it, was happy that his best friend was in his class, and that there was no homework today. Yeah, they are very different.

Reema turned 6 two days ago! It is that odd time of the year where both of the kiddos are the same age. It only lasts for about a month, but it's nearly impossible to explain to people that while they are both the same age, they are not actually twins.

August 7, 2010

Rollercoasters

We went to Six Flags a few days ago. I learned that Reema is completely fearless, and that Azer likes to ride the Teacup (it's not my fault, lol). Complete opposites. I managed to convince him to ride a big, wooden coaster. At the end, he said he would never ride it again. Lol.

I couldn't help but thinking on that ride that it was just like CF. It started out uncertain, what's around the corner? What is it going to be like? Then you go up, and you keep going up, as the doctors give you information, and hope. "Everything is going to be fine, we're in this together" they said. And then for that very first hospital admission and the pills added and treatments and more medicines than I knew existed, I went down, fast. I didn't know how I was going to do it. How was I going to ever look at this baby boy without crying? And then things evened out. I gradually got better. I started to think, oh ... that wasn't so bad! Look! Totally ok! And we're going up.

Then, wait ... what? The hospital again? More medications? Going down! What is this new stuff they want me to do to him now?  New treatments, something else you find out that isn't right with your kid.

It never ends. Whenever I read back through the years on this blog, I read the "up" posts, everything is great, he's gaining weight, not coughing. And then the "down" posts, he's coughing, he's throwing up, he's not gaining, not eating, IV's, X-rays. I guess you kind of learn to prepare for the downs, try to anyway. But sometimes they come when I'm not looking. Sometimes I'm afraid that a down is going to pop up when I'm not ready for it.

I guess I like carousels better than roller coasters.

August 4, 2010

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.

July 22, 2010

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!

July 4, 2010

Fireworks on the 4th ... no, not that kind...

I started giving Azer slightly more enzymes since the clinic visit. It was doctor's orders. Well, he was retching over the toilet for more than 30 minutes this morning. So ... I am cutting back on the enzymes again. Maybe he is just really sensitive to the higher dose of Amylase? Anyway ... he seems perfectly fine now. I'm kind of glad we have the g-tube right now though; he won't get dehydrated as easy.

Here are some photos from a little while ago.

Reema loooooves watermelon.

July 2, 2010

Acapella

I think it's making him cough more than the vest does ... which is a good thing!

July 1, 2010

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!"

June 30, 2010

Red for Conner Day


We all are wearing red today, and spent the afternoon making red bracelets that we can wear to remember Conner. (This was a challenge for Reema, as she seems to have a personal commitment to wearing a completely pink wardrobe everyday). Azer thought it was cool, because red is his favorite color too.


The kiddos let a red balloon go today.