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!
June 8, 2010
June 5, 2010
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..jpg)
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.
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.
.jpg)
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.
June 3, 2010
Things are getting much better
He still has some pain when walking, but he is able to sit in the bed without leaning against the bed. He is sitting straight up and using abdominal muscles. He is also going to the bathroom on his own.
He had pedialyte through his G-tube for a few hours and everything went in fine. He also got his first meal. He ate half a taco on his own, which is pretty good.
He is still taking the old enzymes, Pancrecarb for now. They might be starting the new enzymes tomorrow. They need make sure he is tolerating the enzymes and not vomiting with them before they send him home. So please pray that they can figure his enzymes out.
Here is a picture of his Mic-key button.
There is gauze on the side of it to make sure it doesn't rotate. The gauze can come off in a week. There is no bleeding or leaking so far.
The other white strip on the lower area is over his belly button. It is like a really strong bandaid, replacing the need for stitches. That was where they inserted the camera.
As you can see in the video ... he's doing really well for just having surgery yesterday. :)
He had pedialyte through his G-tube for a few hours and everything went in fine. He also got his first meal. He ate half a taco on his own, which is pretty good.
He is still taking the old enzymes, Pancrecarb for now. They might be starting the new enzymes tomorrow. They need make sure he is tolerating the enzymes and not vomiting with them before they send him home. So please pray that they can figure his enzymes out.
Here is a picture of his Mic-key button.
There is gauze on the side of it to make sure it doesn't rotate. The gauze can come off in a week. There is no bleeding or leaking so far.
The other white strip on the lower area is over his belly button. It is like a really strong bandaid, replacing the need for stitches. That was where they inserted the camera.
As you can see in the video ... he's doing really well for just having surgery yesterday. :)
Getting better slowly
Yesterday was pretty rough. He couldn't urinate while sitting in the
bed, so we carried him to the toilet. He seemed to be in a lot of
pain, but he walked back to bed by himself.
Last night was a little rough. He cried off and on through the night.
He is on pain meds, but not morphin. He was able to slowly get out
of bed this morning so we could get him cleaned up. He is very mucusy
today. It hurts him to cough, but a lot is coming up. Hopefully he can
get a breathing treatment soon. He's going to be off the vest for a
while, so it's CPT for a while.
bed, so we carried him to the toilet. He seemed to be in a lot of
pain, but he walked back to bed by himself.
Last night was a little rough. He cried off and on through the night.
He is on pain meds, but not morphin. He was able to slowly get out
of bed this morning so we could get him cleaned up. He is very mucusy
today. It hurts him to cough, but a lot is coming up. Hopefully he can
get a breathing treatment soon. He's going to be off the vest for a
while, so it's CPT for a while.
June 2, 2010
He's back in his room
He made it through great. And he's got a brand new mic-key button. He
is in some pain. He has had three doses of Morphin so far. He's kind
of out it right now but is answerig questions. His oxygen was a little
low so we are making sure he is taking deep breaths.
is in some pain. He has had three doses of Morphin so far. He's kind
of out it right now but is answerig questions. His oxygen was a little
low so we are making sure he is taking deep breaths.
Done!
In surgery
Well, they wheeled him back a few minutes ago. It should be from 30
minutes to an hour. They gave him sedation medicine, and he was acting
all goofy and silly. He gave me a kiss before they wheeled him through
the double doors.
minutes to an hour. They gave him sedation medicine, and he was acting
all goofy and silly. He gave me a kiss before they wheeled him through
the double doors.
Wheeled down
oxygen. He's a little nervous but is not crying and is coloring.
June 1, 2010
G-Tube maybe tomorrow
So, after having multiple conversations with an uncountable number of doctors and surgeons, it looks like Azer will most likely be getting his G-tube tomorrow morning. The last doctor I spoke with said she is able to put the button in, instead of having to put in a 12 inch tube first, and then waiting about a month for the button. If they can do it that way, I'm sure Azer will be pretty happy. Regardless, I think Azer is getting better about talking about the G-tube. The Child Life specialist came over again today to talk a little more with Azer. I think since I've been more relaxed talking about the G-tube has helped him relax more about it as well.
Soo ... send prayers and good thoughts our way. I'll write a post as soon as something else happens.
Addition: The actual surgeon walked in a few minutes ago ... here are the details. They will made a hole in his belly button where they will insert a laparoscopic camera. They will made an incision in his side where they will pull the stomach up to the surface, and they will inflate his abdomen with gas so they can see. If everything goes ok, they will put the Mickey button in. If things don't go right, they will make a larger incision and insert the 12 inch tube.
Soo ... send prayers and good thoughts our way. I'll write a post as soon as something else happens.
Addition: The actual surgeon walked in a few minutes ago ... here are the details. They will made a hole in his belly button where they will insert a laparoscopic camera. They will made an incision in his side where they will pull the stomach up to the surface, and they will inflate his abdomen with gas so they can see. If everything goes ok, they will put the Mickey button in. If things don't go right, they will make a larger incision and insert the 12 inch tube.
GI study done!
Well, Azer just got done with his GI study. He laid down on a table
and had a big x-Ray machine over his stomach area. He then was
supposed to drink
large gulps of the barium. But he couldn't drink enough of it, so
unfortunately he had to have an NG tube put in temporarily. They shot
barium down the tube and into his intestines, stomach and esophogas.
The good news is that he does not have SMA syndrome or any other type
of compression. All the "tubing" is where it's supposed to be. We did
see the reflux however, so that's probably why he has such a hard time
eating. He probably doesn't know what it feels like to not have it.
Azer said the NG tube was really nasty. He was gagging and crying
through the whole time. He says the back of his throat hurts a little.
After they pulled it out, he said he's hungry. I'm going to order food
now!
and had a big x-Ray machine over his stomach area. He then was
supposed to drink
large gulps of the barium. But he couldn't drink enough of it, so
unfortunately he had to have an NG tube put in temporarily. They shot
barium down the tube and into his intestines, stomach and esophogas.
The good news is that he does not have SMA syndrome or any other type
of compression. All the "tubing" is where it's supposed to be. We did
see the reflux however, so that's probably why he has such a hard time
eating. He probably doesn't know what it feels like to not have it.
Azer said the NG tube was really nasty. He was gagging and crying
through the whole time. He says the back of his throat hurts a little.
After they pulled it out, he said he's hungry. I'm going to order food
now!
GI Study
this morning. I guess they want him to have an empty stomach. If
everything looks good, he will probably be getting the G-tube on
Wednesday. Azer says he feels angry about it, because he doesn't think
he needs the tube. He'd prefer to just keep drinking milkshakes. The
GI study is scheduled in about 20 more minutes. But, sometimes things
get delayed. I hope not though, Azer says he is hungry.
Yesterday he would say he was hungry before meals, but he didn't have
very much to eat.
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.
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.
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