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.

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*

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.

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.

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!

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.

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.

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!

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.

Acapella

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

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!"