So, it turns out that it was mostly due to the weather. His pressures through the conduit look great! She said they are very low. We did the EKG, and that came back fine. Then we did the Echo, and she said that looked about the same as last time. He has moderate leakage with his Mitral and Tricuspid valves, and minimal leakage with his Truncal valve (the main issue). She told us that the average size conduit for an adult is about 20-25mm. If I'm remembering correctly, and he has a 19mm (I'm going to check his medical records tonight) then that should last him a long time!!! She said if he does have a 19mm, then the mostly likely case is that it's going to calcify before he ever outgrows it. We went over to the hospital for the xray to check for calcification, and she saw no signs of it. :) :) :) That's my happy dance! :)
Many times, if there needs to be something done to expand the conduit, they will go in through a catheterization and balloon or stent it. She said that they won't even think about doing that until the gradient (pressures) across the conduit get around 40, for the bottom number. Right now he's measuring 25/16. The numbers are supposed to be as close as possible, from what she said. The numbers represent the pressure in one of the top chambers, compared the one below it. I'm guessing the chambers in question are the ones on the left, as that's where his conduit is and that's the side that the aorta and pulmonary arteries stem from. So, they want to do a catheterization before an open heart in most cases, and he's not even anywhere close to needed the cath! That's the best news we could have hoped for!
Thank you all for thinking and praying for us and Caden. We don't have to go back until October 26th!!! Good job Caden! :)
Tuesday, April 28, 2009
I was able to get Caden in today, at 3:00. I'm starting to think that everything will be okay. I got home last night, and we went to the Chiropractor. He did fine there, just a little bit clammy. Not at all how he had been for the past week or two. It was also not as hot yesterday as it has been, either. Hmmm... I hate this!
After we got home, I got him down to his diaper. Partly cause he was trying to go potty so often, and partly cause we were eating spaghetti and I didn't want him to get it all over him. Well, he was naked for about 30 minutes. He wasn't clammy after that, and I tried to take his temp. I tried under his arm, but he didn't want it like that, so I told him I'd have to take it in his butt. (He knows that word, and thinks it's hilarious) So, he let me. (Paul was very concerned about this... LOL) It was 99.0 when he was completely naked (ok, diaper), and had been for about 30 minutes. I'm starting to think maybe he has had a low grade fever for a week or so, he was working on his two year molars, as well as having a little cough. He might have been clammy as a result of the warmer weather, a cold and his teeth. I think I over analyze things... you think?
Some information that I'm not sure if I shared before. Because Caden was born almost 10 pounds, his heart was significantly larger than normal Truncus babies. Usually Truncus babies are born smaller, because of growth issues in the womb. Usually, not always. We were lucky. Some Truncus babies don't get to 10 pounds until they are a few months old... much less at birth. During his first surgery, they were able (gathered from his medical records) to fit him with a 19mm conduit from his heart to his lungs. A lot of times, they are only able to fit up to 9-10mm, but we were lucky that his heart was already so big...
I have researched conduit size since then, and I have found that "adult" size is considered to be anywhere from 20mm-30mm. That's a whole centimeter difference, but if you think about it, there are small adults, and large adults. The way I think about it, he has a 19mm in right now. (They didn't change it during his second open heart surgery, they just repaired where he ripped his patch back open.) If he grows as scrawny as his dad and I did, that should last him till he's a pre-teen, maybe??? The main concern for me, is that his conduit will start to calcify. That's the reason that it needs to be replaced sometimes, is because it's been in for so long.
I will definitely post sometime tonight or tomorrow with the results from today's cardiology appointment. I am going to ask her about the conduit size and calcification, just to understand it a little bit better. Thank you all for your thoughts and prayers, I will be in touch soon.
Ashlea
After we got home, I got him down to his diaper. Partly cause he was trying to go potty so often, and partly cause we were eating spaghetti and I didn't want him to get it all over him. Well, he was naked for about 30 minutes. He wasn't clammy after that, and I tried to take his temp. I tried under his arm, but he didn't want it like that, so I told him I'd have to take it in his butt. (He knows that word, and thinks it's hilarious) So, he let me. (Paul was very concerned about this... LOL) It was 99.0 when he was completely naked (ok, diaper), and had been for about 30 minutes. I'm starting to think maybe he has had a low grade fever for a week or so, he was working on his two year molars, as well as having a little cough. He might have been clammy as a result of the warmer weather, a cold and his teeth. I think I over analyze things... you think?
Some information that I'm not sure if I shared before. Because Caden was born almost 10 pounds, his heart was significantly larger than normal Truncus babies. Usually Truncus babies are born smaller, because of growth issues in the womb. Usually, not always. We were lucky. Some Truncus babies don't get to 10 pounds until they are a few months old... much less at birth. During his first surgery, they were able (gathered from his medical records) to fit him with a 19mm conduit from his heart to his lungs. A lot of times, they are only able to fit up to 9-10mm, but we were lucky that his heart was already so big...
I have researched conduit size since then, and I have found that "adult" size is considered to be anywhere from 20mm-30mm. That's a whole centimeter difference, but if you think about it, there are small adults, and large adults. The way I think about it, he has a 19mm in right now. (They didn't change it during his second open heart surgery, they just repaired where he ripped his patch back open.) If he grows as scrawny as his dad and I did, that should last him till he's a pre-teen, maybe??? The main concern for me, is that his conduit will start to calcify. That's the reason that it needs to be replaced sometimes, is because it's been in for so long.
I will definitely post sometime tonight or tomorrow with the results from today's cardiology appointment. I am going to ask her about the conduit size and calcification, just to understand it a little bit better. Thank you all for your thoughts and prayers, I will be in touch soon.
Ashlea
Monday, April 27, 2009
Poopy Potty!!!
So, we've been working on the potty for a while now. Kinda touch and go. He has really started to take off with it though!
We've gotten to where we only give him M&M's if he goes potty. He gets 4 for a pee pee, and an egg from Easter filled with about 10 of them for a poopy. At least that was the plan... lol
Saturday, he said potty, so I sat down next to him on the kitchen floor, next to his potty. He sat down, and was talking to me a little bit. He pee peed and got very excited about it. He can feel it, and then he starts screaming, because he knows about the M&M's coming his way. :)
Then he got the "poopy" face. You know, the one where his little face turns kinda red? :) How cute! (Possibly only a mother or father would understand!) I asked him if he was going poopy, and he said yes! I didn't really believe him, but then he stood up and started pointing to the potty, screaming. I looked, and sure enough, he poopied in the potty! It was a big poopy too! :) So, I gave him the egg with M&M's for the first time ever...
He went the whole morning and part of the afternoon without ever using his diaper. Go Caden!!!!
Yesterday, we went to Kohl's and Paul got a bunch of clothes. We got Caden some big boy undies while we were there. He got to pick them out. Adorable! I remember when my brother was little, and his little briefs. It brought back memories! :)
This morning, when I left for work, I kissed all of my boys, and told them to have a good day. About 8:30, Paul called me and I missed it. He text me that I needed to call him as soon as possible. I (of course) freaked out and called him right away.
Here goes...
Paul was standing, unloading the dishwasher. Caden likes to help with this. :) All of the sudden, Caden starts running, ripping at his diaper like a mad man. (Paul's words :) ) He ripped his diaper off on the way to the potty, but he was already pooping. He got some poopy on the kitchen floor, on the seat of the potty (which he immediately sat on) and then from what Paul said, he only got a tiny bit of poopy in the actually potty. The point though, is that he did it! Paul gave him a Caden-sized handful of M&M's and proceeded to clean up the poopy smeared kitchen (and the back of Cadens' leg). He did it!!!
I am so proud of him, he's doing so great! :)
On another note, he goes back to the Cardiologist on the 11th. It's been almost 6 months already! I always get very nervous and anxious for a few weeks before his appointments. I have been freaking out a lot lately. He has been kinda clammy for about a week now. But, like Paul said, it's started really warming up outside, and he's a little boy, running around, using a lot of energy. His little head gets sweaty, which is very scary. He's not really tired though. I have heard on the online group that when it's time for another surgery, the kids get very tired all the time. Like, fall asleep during dinner tired. This is definitely not the case, so I am leaning towards him just being a little boy with a bad heart, who sweats more than the average kid. He's always working harder, and when he plays, it's that much more pronounced. I'm hoping so anyway. Please keep him in your thoughts in the next couple of weeks, especially on the 11th. I'm hoping that he gets a green light for another 6 months, and maybe we can even drop one of his meds! Thanks guys.
Ashlea
We've gotten to where we only give him M&M's if he goes potty. He gets 4 for a pee pee, and an egg from Easter filled with about 10 of them for a poopy. At least that was the plan... lol
Saturday, he said potty, so I sat down next to him on the kitchen floor, next to his potty. He sat down, and was talking to me a little bit. He pee peed and got very excited about it. He can feel it, and then he starts screaming, because he knows about the M&M's coming his way. :)
Then he got the "poopy" face. You know, the one where his little face turns kinda red? :) How cute! (Possibly only a mother or father would understand!) I asked him if he was going poopy, and he said yes! I didn't really believe him, but then he stood up and started pointing to the potty, screaming. I looked, and sure enough, he poopied in the potty! It was a big poopy too! :) So, I gave him the egg with M&M's for the first time ever...
He went the whole morning and part of the afternoon without ever using his diaper. Go Caden!!!!
Yesterday, we went to Kohl's and Paul got a bunch of clothes. We got Caden some big boy undies while we were there. He got to pick them out. Adorable! I remember when my brother was little, and his little briefs. It brought back memories! :)
This morning, when I left for work, I kissed all of my boys, and told them to have a good day. About 8:30, Paul called me and I missed it. He text me that I needed to call him as soon as possible. I (of course) freaked out and called him right away.
Here goes...
Paul was standing, unloading the dishwasher. Caden likes to help with this. :) All of the sudden, Caden starts running, ripping at his diaper like a mad man. (Paul's words :) ) He ripped his diaper off on the way to the potty, but he was already pooping. He got some poopy on the kitchen floor, on the seat of the potty (which he immediately sat on) and then from what Paul said, he only got a tiny bit of poopy in the actually potty. The point though, is that he did it! Paul gave him a Caden-sized handful of M&M's and proceeded to clean up the poopy smeared kitchen (and the back of Cadens' leg). He did it!!!
I am so proud of him, he's doing so great! :)
On another note, he goes back to the Cardiologist on the 11th. It's been almost 6 months already! I always get very nervous and anxious for a few weeks before his appointments. I have been freaking out a lot lately. He has been kinda clammy for about a week now. But, like Paul said, it's started really warming up outside, and he's a little boy, running around, using a lot of energy. His little head gets sweaty, which is very scary. He's not really tired though. I have heard on the online group that when it's time for another surgery, the kids get very tired all the time. Like, fall asleep during dinner tired. This is definitely not the case, so I am leaning towards him just being a little boy with a bad heart, who sweats more than the average kid. He's always working harder, and when he plays, it's that much more pronounced. I'm hoping so anyway. Please keep him in your thoughts in the next couple of weeks, especially on the 11th. I'm hoping that he gets a green light for another 6 months, and maybe we can even drop one of his meds! Thanks guys.
Ashlea
Wednesday, April 15, 2009
Updates...
So, the therapist came out last week and did her evaluation. There were two people, actually, and guy and a girl. I went home for lunch so that I could hear it for myself. You know how men are with remembering that kind of stuff. :)
They said that he definitely qualifies for speech therapy. He has a few problems:
-He condenses his "sentences" into one or two syllables, and that's why most his words don't sound like any real words.
-He leaves off the consonants at the end or beginning of words, or he says it backwards. Like Du for duck and ga for dog. I know that doesn't make sense, but if you heard him, you would get what I'm saying.
So, he is still using baby words, and he needs to be drinking out of a big boy cup as much as possible. It helps develop different muscles that he needs to be able to speak more clearly. The first real therapy session will be on the 21st at 11:00. I may or may not go home for an early lunch. We'll see. That's also the day that we are taking Cameron for his three month pictures. I can't believe he's already that old! He's getting so big.
He can old his head up very well by now. He can roll over, though not all the time. He likes tummy time a lot. He "talks" a lot, and he smiles a lot. He loves bath time, and Caden likes to help with it too! Things are going pretty good right now. I'm still pumping up a storm. I get about 8oz every 4 hours. That's almost double what he needs, but I'd rather have too much than not enough. He still has never had any formula!!! :) I think I could feed him for about a month on what's in my freezer!
I'll let you know how therapy goes when she comes out on the 21st.
They said that he definitely qualifies for speech therapy. He has a few problems:
-He condenses his "sentences" into one or two syllables, and that's why most his words don't sound like any real words.
-He leaves off the consonants at the end or beginning of words, or he says it backwards. Like Du for duck and ga for dog. I know that doesn't make sense, but if you heard him, you would get what I'm saying.
So, he is still using baby words, and he needs to be drinking out of a big boy cup as much as possible. It helps develop different muscles that he needs to be able to speak more clearly. The first real therapy session will be on the 21st at 11:00. I may or may not go home for an early lunch. We'll see. That's also the day that we are taking Cameron for his three month pictures. I can't believe he's already that old! He's getting so big.
He can old his head up very well by now. He can roll over, though not all the time. He likes tummy time a lot. He "talks" a lot, and he smiles a lot. He loves bath time, and Caden likes to help with it too! Things are going pretty good right now. I'm still pumping up a storm. I get about 8oz every 4 hours. That's almost double what he needs, but I'd rather have too much than not enough. He still has never had any formula!!! :) I think I could feed him for about a month on what's in my freezer!
I'll let you know how therapy goes when she comes out on the 21st.
Subscribe to:
Posts (Atom)