May 31, 2010

No Vomiting

Well, Azer still has not been having any vomiting. Today the CF doctor came in and talked more about possible SMA syndrome. Then, the GI doctors came in a few times and their theory is that it's possibly enzyme intolerance. So, we'll find out tomorrow who is right. Tomorrow they are doing a GI-study. He will drink some liquid containing calcium, and then he will go to radiology throughout the day so they can see how things are moving through his GI system.

It looks like Azer may possibly be getting the G-tube on Wednesday. The GI doctors seem to be ready to get that ball rolling, so we'll see what happens. Regardless of whether Azer gets the G-tube or not, we still need to find some enzymes that will work for him. He is still taking Pancrecarb, and the supply will not last forever, so hopefully they can find an enzyme that will not cause vomiting in him. Darn FDA...

Azer has been saying he's hungry today, but hasn't eaten much during meals. We have not been giving him any milkshakes, or Scandishakes, and have been letting him eat as he feels. No pressure. I guess that's how it should be. A Child Life specialist came in and brought a doll and talked about the G-tube with him so he could understand it. He got to touch and feel the tube and the button, and different catheters. She was very honest and down to his level, and told him that yes, it will be sore for a few days, but that in the long run, this will be a great thing for him. So, it sounds like after he gets the G-tube, he'll have to stay out of the pool for a few weeks, but after, he should be able to play ball and go swimming, and be a kid again.

May 30, 2010

Just waiting

Well, we just saw the Doctor who said that we will play with his
enzyme dosage here and see if we can stop the intermittent vomiting.
She still has a hunch that it's something related to some artery
compression because he is apprently absorbing better on the zenpep

In the hospital

Well, Azer woke up this morning needing to throw up. He threw up, and dry heaved for about a half an hour. He drank some water after, but he threw that up immediately. So, after that he seemed
fine, so I gave him a milkshake to see how that went. He threw that up within minutes. So, I knew he was probably not going to get to play his tournament. I called the CF doctor, and she said to bring him in. So we are in the ER department right now. We might be looking at admission, so Reema is staying with friends for now.

Azer's stool this morning looked pale-ish and floated, which happens a lot on Pancrecarb. I was expecting to see his vomiting getting better. Azer is pretty angry that he couldn't play his baseball game today.

I'm hoping this time we can go ahead and get the G-tube put in. Since he has started the zenpep, his appetite is nearly non-existant. It's been a huge struggle to get him to eat. Last week in the ER he was around 21 kilos, at pediatrians he was 20 kilos. Today when they weighed him, he is 19.8 kilos. It is scary to see the weight drop like that. I mean, we have all worked so hard on keepin his weight up, and he had gained pretty good weight on these Scandishakes and milkshakes. It's almost like all that progress is gone.

Well, I'll post later when I find out results of the blood test and x-Ray. He is on iv fluids right now. Send good thoughts our way!

May 29, 2010

Threw up.... again

Azer had two tournament baseball games for today. He was excited last night about it. So, this morning, I woke up early so I could get Azer drinking his morning milkshake, and to hope that he could get it down before he had to start running around in the hot sun. Well, things didn't exactly go as planned. He took his meds and had a few sips of the Scandishake, and then had to run into the kitchen and threw up in the sink. He seemed perfectly fine after he was done throwing up. Plenty of energy, no fever. Everything was fine, just like after he threw up yesterday.
I was so frustrated. I mean, I was wondering how the heck was he going to play baseball, basically all day, on an empty stomach with practically nothing in it? I was really emotional and stressed. So, I called the CF doctor on call. She was great. She said as long as he stays hydrated, and gets salt with each thing he drinks, that he should be fine playing baseball. So, I gave Azer a Caprisun, and sprinkled some salt on his tongue, and he kept it down fine.

Azer was fine during the first game (they lost miserably though ... the team we were playing against was used to playing tournaments). I kept Azer wet, and kept giving him salt after each half-inning. After the game, Azer had lunch with a team mate and his coach. He actually ate food, which is amazing.

We lost the second game too, but luckily Azer wasn't too disappointed. He looked pretty lively on the way home. When we got into the door, he looked tired and like something wasn't quite settled with him. Yep ... he ran to the bathroom and threw up again. I called the CF doctor again right away. After talking with her for a while, she was thinking Azer had something called SMA syndrome. She said it wasn't serious, and that it was something normal. I don't really understand it completely. When I googled it, it looked pretty serious to me. She said to put Azer temporarily back onto his old enzymes, and see if the vomiting goes away. If it does, then we'll have to adjust his new enzymes somehow. The doctor said she really wasn't concerned with how Azer sounded. She said he sounds alright, and to just try to experiment with the enzymes and see if things will change through the weekend.

Azer has another game tomorrow. Basically, his team plays until they loose.

So, off I go to "experiment" on my child.

May 28, 2010

Threw up again

Well, I thought everything was going fine with his enzymes, until Azer threw up today a little while after he came home from school. It seemed like a lot. I called the CF doctor, and the nurse called back and said that as long as he is acting normal, just try to keep an eye on it through the weekend. I just have a feeling it might have something to do with his new enzymes. Hopefully it is just going to take a couple days for his body to get used to them.

Azer joined a team today that will play in a t-ball tournament tomorrow. He will basically be outdoors all day, so hopefully I can keep him well hydrated and feeling good.

May 26, 2010

New Enzymes and Last Baseball Game!

Today is Azer's first full day on the new enzymes, Zenpep. So far, his bowel movements sink, and they look pretty normal, and there is no gas or bloating. The enzymes come in a glass bottle... kind of interesting.

I've still been waking up at 3am to give him his antibiotics. The spots on his feet and hands seem to be going away. And no more fevers!

Today was Azer's last game. His team won today's game, and we got first place!

There are only two days left of school!

May 25, 2010


So, yes he does have foot, mouth and hand disease, but apparently he was only contagious when they have a fever, which has been gone since Friday. So, he can go to his last few days of school.

The culture from the ER came back positive for Pseudomonas, so I'm waiting to hear back from the CF doctor to find out if they want to treat it.

Well, here's what his feet look like. His hands only have a few spots, but on his hands they look more like little pimples. On his feet, it looks like there are spots deep under the skin. Doctor says they should go away within a week.

Oh yeah, and the pediatrician seemed to be concerned that Azer was on Cipro, the antibiotic. I felt like I was trying to convince him that he should probably finish the 10 day course. *sigh* I always feel like I'm trying to explain things to the pediatric department.

Hands, Feet, Mouth ... what?

Azer hasn't thrown up since that night in the ER. It took about a day before he began to drink his milkshakes normally though. He missed practice on Friday, and missed his first baseball game ever on Saturday. He still had a headache that day, and he just wasn't drinking his milkshake. I couldn't have him running around in the heat on an empty stomach.

In order to give him his antibiotics at the right time, and not to close to his Prevacid, I've had to give them at 3pm and 3am. That's the best thing I could figure out.

So, yesterday morning, while I was getting Azer ready for school, he said his feet hurt a little. Well, I took a look and he has red spots on his feet ... kind of under the skin. That's weird, I thought. I took a look at his hands, and they have small, pimple type bumps on them. And his tongue is coated white, with some red splotches. The school nurse said it looked like Hand, Mouth, and Foot disease. So lovely. I called the pediatrician, and they thought it would be good if we brought him down there ... again. Apparently, it's very contagious, but the nurse from the pediatrician's office said she thinks it's only contagious while the child has a fever. So, perhaps when he was having fevers last week it was from this?

Reema had a fever and headache yesterday, and was sent home from school in the afternoon. She is fine today, though. So, in about an hour, we'll head over to the Children's Hospital ... again...

May 21, 2010


Yesterday evening, after the game, Azer's fever started to spike up to 104. He vomited later on in the evening, and his headache was pretty painful. I gave him another dose of Motrin, and then we decided to take him to the ER. We were there until 6:30 in the morning, he threw up a few times there as well, and seemed to be having trouble trying to keep liquids and tylenol down. They swabbed him to test for strep, and it was negative. The video is of Azer getting swabbed.
Eventually, his stomach settled, and they sent us home with some prescriptions. They don't really know exactly why he has a fever and is ill. One prescription for nausea, and another prescription for Cipro. He's never been on that one before. I had a hard time finding a pharmacy that would fill the prescription because it seems most pharmacies don't carry Cipro. I finally got the prescription filled a few hours ago. I was reading the bottle and it says not to give within 6 hours of an antacid, which he is currently taking. The pharmacist says to space the meds, but I'm not sure how to space it so he can eat at a normal time. *sigh*

I hate cleaning up vomit. Really. I guess I'm just really grossed out by it. Other people just clean it up, and I practically stand there waving my arms in the air as the child vomits.

Ok. I need to eat something, and sleep.

May 20, 2010

Headache before Baseball

Well, when Azer came home from school, he felt hot. And indeed he was. He started out with a fever of 100.3 and went up to 102. Azer had a baseball game in about 1 and a half hours, and he was crying and feeling miserable. He said he had a headache. This is the same thing that happened before his last ear infections. I finally heard back from the CF nurse after calling several times. She said it could be a virus, or an ear infection starting to happen. I gave Azer ibuprofen and Tylenol, I flushed his sinuses twice, and he was doing a great job convincing me that he could play.

Azer played baseball very well tonight too. He makes a great first baseman. I can't believe his baseball season is almost over already. T-ball runs for only a few months, it seems to just fly by. We have had an amazing coach this year. We are actually in first place in our division (so far)! He is amazing with the kids and Azer just adores him. Oh yeah, and on Tuesday, when practicing batting at the tee, the tip of the tee broke off. Heh ... it might have already had a crack in it, but Azer believes he swung that hard that it just plain broke.

So during his meal tonight, Azer was getting another headache. I think the medication was wearing off. He ate a few bites, which is pretty good for him, and he drank his milkshake. Speaking of which, he is always full of milkshakes, seeing as he gets about 4 or 5 of them a day. But, he does a fantastic job of pushing himself to drink them. Especially when he is not at home. It seems at home, he takes longer to drink them. I think maybe it's because I am always hovering over him. He's gotten so independent this year. Really, they both have. They have become amazingly smart this school year. Only one more week left of school. Can you believe it?

Anyway, hopefully tomorrow Azer will feel alright.

For Conner

Conner's story has touched home with me, because he is so close to Azer's age. He has Cystic Fibrosis, and also has Prune Belly Syndrome which basically causes you to have no abdominal muscles, and smaller than normal lungs. That combined with CF has not been easy for Conner.

This past year, Conner's health has declined rapidly. As of just a few weeks ago, his mother has had the painful experience of dealing with hospice, and now she is having to plan for his funeral, as it appears Conner will not have much time left in this world.

This is Conner's blog.

Friends of Conner have made this website to help his family pay for the funeral that seems to be coming very quickly. Please consider donating something to help their family. If you have a child with CF, or are affected by CF, you know how expensive the care can be.

May 9, 2010

Ear infections for Mother's Day!??

On Friday, the kids had Field Day at school, and Azer and Reema spent a few hours in the sun running around and having a great time.

That evening, Azer had baseball practice. I kind of noticed he looked just barely not quite right. I wasn't sure if maybe it was from being out the sun all day. That night, he was up literally all night with a severe headache and his ears hurt.

So yesterday morning, he woke up feeling horrible. He was crying and his head hurt really bad. But, he had a baseball game, and he spent the whole morning trying to convince me that he was fine. I didn't have the heart to say "no" to him, since he was so adamant about going to the game.

So, I gave him a milkshake, and he seemed fine with it. When I was helping him put his uniform on, I kept looking at him and really was considering keeping him home, but he noticed I was observing him closely, and he forced a big grin on his face. Hmm...

When the team was warming up, Azer came to me a few times in tears and told me that there were "bubbles" in his ears. Yep ... ear infections. He looked horrible. I asked him if he wanted to go home, or if he wanted to sit and watch the other boys play. No, he absolutely had to play in the game. He played pitcher and first base, and got a few kids out, fever and all. When he was up to bat, he hit that ball over the kids heads. Amazing, really. And he practically cried through the whole game.

So, after I took him home, I waited a few hours to see if he would improve. I had already given him more Ibuprofen than I should have. I called the CF doc on call, and he recommended taking him to the ER. Fun, fun.

The ER doctor said he has two ear infections, and that the ear drums looked angry and ready to burst. One of the ear drums ruptured as we were leaving, but I think it relieved the pain, because there was just so much build up of fluid. Azer got sent home with oral antibiotics for 10 days. He woke up once last night with ear pain, but this morning, he bounced out of bed with no symptoms, pain, or fever. Amazing, hu?

May 3, 2010

Enzyme changes ... oh dear

So, it seems that Pancrecarb, the enzyme Azer has been taking since the beginning, is not going to be produced. I don't know if it's permanently, or just for the time being. But, I called the CF clinic, and the nurse confirmed it. She said when Azer needs a refill on enzymes, they will be putting him on a different kind. I'm so worried about it. His digestion and absorption is so difficult to get right. Either he's constipated, or he's not absorbing at all. I just hope that the new enzymes work as well as the Pancrecarb has always seemed to work.