Caleb went to the cardiologist and they checked him out. Of course they couldn't see the left side of the heart. Isn't that just the case? So they said they think the artery is still open, but they are unable to see for sure.
Of course, that's not good enough for my doctor, so we're going to have to go into the hospital for the lung test in nuclear medicine again. It always seems like something is going on, doesn't it? Anyhow, we'll be heading in there near the end of the month, but will get the results right that day instead of having to wait for them.
We're hoping that the baby has at least a 70/30 split with the bloodflow to the lungs. The normal amount is 55/45, favoring the right side. Most of us are probably walking around with that. So we're talking to the baby about it, letting him know what his score should be.
If he makes the 70/30--no further action to be taken. We woot, we party, we do the happy dance!
If he does less than that, then they talk about the stent again. They cannot put an adult stent through the leg on the baby. If they do this, they will have to go in later and *rip it out.* This involves open-chest, real hard-core heart surgery. No thanks. So they have 'invented' an option. They will go to the surgeons, go thru the chest wall with an adult size stent (not opening the chest bone) and put it in place.
This will then require several smaller "surgeries" through the leg as the baby gets older to open up the stent into the full, adult size it will become.
What I am hoping for is this: Now that the lung gets the idea that it's supposed to be having a good blood flow, and now that the baby is on aspirin therapy, the two will combine (wonder twin powers, ACTIVATE!) and let that bloodflow grow like it should!
We found out the aspirin is every day for life. :) Hope the baby likes aspirin.
Wednesday, August 8, 2007
Saturday, July 28, 2007
Palpating Pedal Pulses
When we spoke with the doctor about the cath procedure, he wasn't very sure of what the outcome would be. He said he was doubtful that they could balloon him, and doubtful that he could stent him... in fact he was suggesting that the better alternative would probably be to send Caleb to the surgery team and have them implant the stent. He basically said, "I could be an hour, I could be three, I don't know."
Well... when we were past the hour mark I started to relax. I had been telling everyone all morning that the balloon procedure would work, and that's just the way it is. Caleb and I had talked about it. The stenting didn't end up sounding as bad as I was afraid of, but I still didn't want that. I knew Caleb wouldn't want it, either.
After visiting the Parent's Center, I was walking back to visit the gift shop, and one of the doctors passed me. He was one of Caleb's original doctors and had recognized us from our original stay. He visited us that morning in the the pre-op area. In any case, he gave us a quick update. When they used the dye in his blood, the right lung instantly darkened and was full of blood. A small, pencil thin line of dye did eventually show up on the left side. He said that the doctor perfoming the procedure was "very surprised" but they were able to get a wire through. But that's where it was left, and the doctor didn't know what he was going to do from there yet.
I was very encouraged by this news indeed! After a while I got the page and went to listen to the doctor. I got some pretty pictures out of this deal. Before and after. Well, they did end up balooning the artery. There was a signifigant improvement over before (ie blood was flowing!!), however, blood wasn't flowing everywhere it needed to go... yet.
The doctor said that it might just fix on its own, now that the blood vessel was pumping blood where it should go, and might grow and expand like it needs to. He felt that the problem was at the beginning of the artery where he balooned it, not out in the branches. He said this wasn't very likely, but could happen. The second option was that now that there was bloodflow, in six months or so they might go in and give the baby a stent after all when he's bigger.
What we do now: Watch it. Make sure it doesn't close back up. Have an echo with our favorite cardiologist on Wednesday.
We spent the night at Children's for observation. What they ended up observing closely was his right leg. That was the side they went through the groin veins on, and although rare, the vein could colapse and not give blood to the rest of the leg. The signs were "a foot as blue as your jeans." This being said, Caleb's right leg was visibly paler than his left, and you could feel a temperature difference.
It was difficult to "palpate" his "pedal pulses." What this means is that it was difficult to feel his pulse in his right foot with your hand. The doctor who did the cath came back and felt that the bandage was too tight. He loosened it. In another hour he came back and loosened it a little more, and brought his doppler with him. (A doppler is a machine that listens to pulses--the same idea as the one that they use to listen to the baby's heartbeat when he's still inside the mama!) He "wasn't convinced" he was feeling a pulse in Caleb's foot The doppler proved there was a pulse.
All night long and all morning long everyone was concerned about the foot, and confused over the foot. Here the foot has pulses that you can feel no problem, there the foot has no pulses that you can feel, the foot is lighter than the other, the foot is colder than the other... one of the guys said, "If we didn't have the other leg to compare it to, then we would just think it was fine."
In the end, they sent him home and just told us to keep an eye on it.... bah, crazy stuff.
Well... when we were past the hour mark I started to relax. I had been telling everyone all morning that the balloon procedure would work, and that's just the way it is. Caleb and I had talked about it. The stenting didn't end up sounding as bad as I was afraid of, but I still didn't want that. I knew Caleb wouldn't want it, either.
After visiting the Parent's Center, I was walking back to visit the gift shop, and one of the doctors passed me. He was one of Caleb's original doctors and had recognized us from our original stay. He visited us that morning in the the pre-op area. In any case, he gave us a quick update. When they used the dye in his blood, the right lung instantly darkened and was full of blood. A small, pencil thin line of dye did eventually show up on the left side. He said that the doctor perfoming the procedure was "very surprised" but they were able to get a wire through. But that's where it was left, and the doctor didn't know what he was going to do from there yet.
I was very encouraged by this news indeed! After a while I got the page and went to listen to the doctor. I got some pretty pictures out of this deal. Before and after. Well, they did end up balooning the artery. There was a signifigant improvement over before (ie blood was flowing!!), however, blood wasn't flowing everywhere it needed to go... yet.
The doctor said that it might just fix on its own, now that the blood vessel was pumping blood where it should go, and might grow and expand like it needs to. He felt that the problem was at the beginning of the artery where he balooned it, not out in the branches. He said this wasn't very likely, but could happen. The second option was that now that there was bloodflow, in six months or so they might go in and give the baby a stent after all when he's bigger.
What we do now: Watch it. Make sure it doesn't close back up. Have an echo with our favorite cardiologist on Wednesday.
We spent the night at Children's for observation. What they ended up observing closely was his right leg. That was the side they went through the groin veins on, and although rare, the vein could colapse and not give blood to the rest of the leg. The signs were "a foot as blue as your jeans." This being said, Caleb's right leg was visibly paler than his left, and you could feel a temperature difference.
It was difficult to "palpate" his "pedal pulses." What this means is that it was difficult to feel his pulse in his right foot with your hand. The doctor who did the cath came back and felt that the bandage was too tight. He loosened it. In another hour he came back and loosened it a little more, and brought his doppler with him. (A doppler is a machine that listens to pulses--the same idea as the one that they use to listen to the baby's heartbeat when he's still inside the mama!) He "wasn't convinced" he was feeling a pulse in Caleb's foot The doppler proved there was a pulse.
All night long and all morning long everyone was concerned about the foot, and confused over the foot. Here the foot has pulses that you can feel no problem, there the foot has no pulses that you can feel, the foot is lighter than the other, the foot is colder than the other... one of the guys said, "If we didn't have the other leg to compare it to, then we would just think it was fine."
In the end, they sent him home and just told us to keep an eye on it.... bah, crazy stuff.
Friday, July 27, 2007
At Children's
I am in Children's Hospital's new Parent area at the moment. Caleb is having his procedure in the heart cath lab. We just ate lunch and are now looking aroud. I just saw the internet and thought I would pop on. You know an addict when you see one.
The little dude did really well this morning for not getting to eat. I woke him up at 1am for a bottle (he didn't sleep-walk but he sleep-ate!) He probably didn't even know I was there! But he ate 3oz and then went back to sleep. When I got him up to put him in the car seat, he was still in the same position.
We got to Children's and they put us in a waiting area.... where we waited. He was weighed, measured and put in a gown. Thankfully he went to sleep for a while. Then when he woke up he realized that he hadn't ate yet and started to hollar. This was at about 10am when his procedure was supposed to start.
After he calmed down, the doctors showed up, and finally they took him back at about 10:20 a.m. I went up to the cafeteria and had the famous grilled cheese sandwich that they serve here. TWO THUMBS UP on this thing... I swear it's worth coming to the cafeteria here just for the cheap food. haha But it's not healthy food... go figure. The best things here are the grilled cheese, the cheeseburger and the fried chicken strips!
Ah well, just stopped by to explore the area... will update. :)
The little dude did really well this morning for not getting to eat. I woke him up at 1am for a bottle (he didn't sleep-walk but he sleep-ate!) He probably didn't even know I was there! But he ate 3oz and then went back to sleep. When I got him up to put him in the car seat, he was still in the same position.
We got to Children's and they put us in a waiting area.... where we waited. He was weighed, measured and put in a gown. Thankfully he went to sleep for a while. Then when he woke up he realized that he hadn't ate yet and started to hollar. This was at about 10am when his procedure was supposed to start.
After he calmed down, the doctors showed up, and finally they took him back at about 10:20 a.m. I went up to the cafeteria and had the famous grilled cheese sandwich that they serve here. TWO THUMBS UP on this thing... I swear it's worth coming to the cafeteria here just for the cheap food. haha But it's not healthy food... go figure. The best things here are the grilled cheese, the cheeseburger and the fried chicken strips!
Ah well, just stopped by to explore the area... will update. :)
Wednesday, July 18, 2007
Bah News.
Bah. Bah bah bah.
So I got a phone call about my little guy today. It turns out that the pulling in his newly fixed heart is affecting the bloodflow to his left lung after all. So now he has to have another procedue, which will happen on Friday at Children's Hospital. This will require another overnight stay.
I have more details, but I must say I've had a very long and very tiring day...
So I got a phone call about my little guy today. It turns out that the pulling in his newly fixed heart is affecting the bloodflow to his left lung after all. So now he has to have another procedue, which will happen on Friday at Children's Hospital. This will require another overnight stay.
I have more details, but I must say I've had a very long and very tiring day...
Friday, July 13, 2007
Ha! A new post!
Let me tell you, we have been very busy...
Last month Mr. Caleb was feeling a little under the weather. We took him to his regular pediatrician and they sent us for an overnight in the hospital. Any other baby they said that they would have sent home with a "keep an eye on him." But they wanted to keep an even closer eye on him. So we spent the night at Children's Hospital. What was wrong with him? Who knows!! His fever was gone by that afternoon in the ER, and he was playing and being a normal baby. His breathing, which had turned to a rough grunting, was smooth once again.
That week his family from Kentucky came to visit: Auntie, Nana and Great Grandma (aka Granny). We had a good week with them. He didn't mind getting poked and prodded by family. :)
Today we had his "Lung Profusion Scan." They checked to see how much blood was flowing from the heart to each lung. I do not know the results of this scan... the techs wouldn't even give me an idea. From my viewpoint I could see there WAS indeed blood flowing to each lung, and to me it looked like there was a difference, but not a huge one. Of course, I am not a tech, and I cannot say for sure.
We also had his weight-check and doctor visit. He is 12.5lbs now. I was mistaken earlier when I said he was 50% all the way. He was 50% in height/head size. 25% is where he is on his weight. So I got a skinny little guy. He's actually not all that skinny! He does have a cute little belly, nice chubby thighs and arms... a dinky bum, though! He has the cutest little bottom.
He's doing well, except we must now add another doctor: an eye doctor. His pediatrician thinks that his eyes are very slightly crossed. So they just want to make sure there are no eye muscle problems. As we've heard countless times, it's better to fix this stuff now than wait until he's older (and yet we've heard countless times that they're waiting until he's older to do certain things!)
Last month Mr. Caleb was feeling a little under the weather. We took him to his regular pediatrician and they sent us for an overnight in the hospital. Any other baby they said that they would have sent home with a "keep an eye on him." But they wanted to keep an even closer eye on him. So we spent the night at Children's Hospital. What was wrong with him? Who knows!! His fever was gone by that afternoon in the ER, and he was playing and being a normal baby. His breathing, which had turned to a rough grunting, was smooth once again.
That week his family from Kentucky came to visit: Auntie, Nana and Great Grandma (aka Granny). We had a good week with them. He didn't mind getting poked and prodded by family. :)
Today we had his "Lung Profusion Scan." They checked to see how much blood was flowing from the heart to each lung. I do not know the results of this scan... the techs wouldn't even give me an idea. From my viewpoint I could see there WAS indeed blood flowing to each lung, and to me it looked like there was a difference, but not a huge one. Of course, I am not a tech, and I cannot say for sure.
We also had his weight-check and doctor visit. He is 12.5lbs now. I was mistaken earlier when I said he was 50% all the way. He was 50% in height/head size. 25% is where he is on his weight. So I got a skinny little guy. He's actually not all that skinny! He does have a cute little belly, nice chubby thighs and arms... a dinky bum, though! He has the cutest little bottom.
He's doing well, except we must now add another doctor: an eye doctor. His pediatrician thinks that his eyes are very slightly crossed. So they just want to make sure there are no eye muscle problems. As we've heard countless times, it's better to fix this stuff now than wait until he's older (and yet we've heard countless times that they're waiting until he's older to do certain things!)
Friday, June 15, 2007
Big Week!!
Well, this was a huge week for the little one. Little guy, big times.
Monday came all too soon for mama. It was the day that I started back at work. This is a good thing because now I am getting paid again (I ran out of my vacation/sick time). So I’m back at work doing my thing. It went well at first, and I can make it generally through half a day before I start missing him so much. Honestly if I could make this same money and work part-time, I would love that. I like being out of the house and talking to people, and yet I also like being with my little bug. I try to keep the phone call down to once a day to my mom.
The first day I called and she picked up he was crying in the background. This started me crying at my desk. I wanted to be there and hug him and have him crying in my ear in person!
Wednesday didn’t come soon enough. What was Wednesday? His cardiology appointment, and the day I took off from work. Usually we leave the house before 8am and get home about 1pm. It’s a long day, so I thought I would just take the remainder of the day off to be with him.
The cardiologist went well. He was weighed, measured and declared cute! I didn’t get an exact weight off of them, we were having so much trouble trying to get the bug to stretch out for his height that I forgot. He was measured twice in height, and the end result was 23 inches. The nurse felt he looked longer than that, but he wasn’t going to cooperate to find out.
After we went through that wiggly episode, we took him for the echo. He sat still for like… 12 seconds. Then he started to wiggle and get upset. He didn’t like the cold gel on him, and he didn’t like the probe pushing on him. A bottle let him keep quiet (but not still) for a few minutes. Finally they let him fall asleep on me before they did a few more scans. In the end Caleb declared he didn’t like having his belly pushed on by the person doing the echo (who is a nice lady!) and woke up to complain about it.
They followed this torture up with a blood pressure (ANGRY baby) and an EKG (he didn’t really care). Both of these looked fantastic.
His cardiologist said that everything is looking so well. What she is concerned about is that she cannot see the left part of his heart in the scans. Why not? A) Wiggly baby, B) Scar tissue on the front of his chest, C) the left side is hard to see and D) the little guy is a ‘difficult scan’ even today. What she wants to see is how the blood is flowing to the lungs. If blood to the lungs is going well, then she knows that part of his heart is going well.
The next step: A chest x-ray. So we went down to the x-ray, and we were shown on a stuffed bunny how the baby was supposed to lay for his x-rays (and asked if anyone could be pregnant—I know the answer to this is definitely no, but it’s still a scary question to someone who just had a baby!). Let me tell you, Caleb did NOT think much of this at all.
At all.
I’m sure the other parents were all a little scared at the screams that were going on. At least we know that the lungs are definitely working!!
The torture was soon finished with and we went back to our room to wait. The doctor examined the chest x-rays and then came back with her report. The bloodflow to his lungs is definitely un-even. How un-even? They can’t tell from the x-ray. What they are going to have to do is do another one, but this time with an IV with special tracers so that they can tell how much is going to each lung.
If it is 60/40ish… no problem.
If it is 80/20… no problem now, but it could be a problem when he’s an adult. She’s now looking 20-40 years down the road for him. She mentioned that she’s overly cautious and conservative, and this we know.
If things are fine: great, no problem.
If there is something that needs to be fixed, then he will need to go to the cardiac cath lab to see if there is anything that can be done about it. This test that we’ll do will be within the next few months.
To prove how well he was developing, Caleb decided to show them his stuff. He sat up, held his head up very nicely, and then rolled over. Yes, he rolled from his back to his front. He was so surprised and shocked that he let out a yell. I rolled him back over, and he just rolled right back on his tummy. I left him there for a moment, but he would have nothing of it.
And still… yes there is more… he wasn’t even going to leave his day alone! He and I were playing together, and I was blowing raspberries onto his tummy and giving him a little lift into the air. He had a great smile on his face. Then suddenly I lifted him up and down, and he looked at me and laughed out loud for the first time!! A real laugh!! Again it startled him so much he wasn’t sure what to make of it. He decided that was enough laughing and hasn’t made a peep yet.
Oh what a sweet boy I have!! I just don't like the fact that now I only get four hours a day with him before he's going off to bed, and only 20 minutes in the morning when we have our a.m. bottle together. Please note he gets the bottle, I just get to snuggle with him. :)
Monday came all too soon for mama. It was the day that I started back at work. This is a good thing because now I am getting paid again (I ran out of my vacation/sick time). So I’m back at work doing my thing. It went well at first, and I can make it generally through half a day before I start missing him so much. Honestly if I could make this same money and work part-time, I would love that. I like being out of the house and talking to people, and yet I also like being with my little bug. I try to keep the phone call down to once a day to my mom.
The first day I called and she picked up he was crying in the background. This started me crying at my desk. I wanted to be there and hug him and have him crying in my ear in person!
Wednesday didn’t come soon enough. What was Wednesday? His cardiology appointment, and the day I took off from work. Usually we leave the house before 8am and get home about 1pm. It’s a long day, so I thought I would just take the remainder of the day off to be with him.
The cardiologist went well. He was weighed, measured and declared cute! I didn’t get an exact weight off of them, we were having so much trouble trying to get the bug to stretch out for his height that I forgot. He was measured twice in height, and the end result was 23 inches. The nurse felt he looked longer than that, but he wasn’t going to cooperate to find out.
After we went through that wiggly episode, we took him for the echo. He sat still for like… 12 seconds. Then he started to wiggle and get upset. He didn’t like the cold gel on him, and he didn’t like the probe pushing on him. A bottle let him keep quiet (but not still) for a few minutes. Finally they let him fall asleep on me before they did a few more scans. In the end Caleb declared he didn’t like having his belly pushed on by the person doing the echo (who is a nice lady!) and woke up to complain about it.
They followed this torture up with a blood pressure (ANGRY baby) and an EKG (he didn’t really care). Both of these looked fantastic.
His cardiologist said that everything is looking so well. What she is concerned about is that she cannot see the left part of his heart in the scans. Why not? A) Wiggly baby, B) Scar tissue on the front of his chest, C) the left side is hard to see and D) the little guy is a ‘difficult scan’ even today. What she wants to see is how the blood is flowing to the lungs. If blood to the lungs is going well, then she knows that part of his heart is going well.
The next step: A chest x-ray. So we went down to the x-ray, and we were shown on a stuffed bunny how the baby was supposed to lay for his x-rays (and asked if anyone could be pregnant—I know the answer to this is definitely no, but it’s still a scary question to someone who just had a baby!). Let me tell you, Caleb did NOT think much of this at all.
At all.
I’m sure the other parents were all a little scared at the screams that were going on. At least we know that the lungs are definitely working!!
The torture was soon finished with and we went back to our room to wait. The doctor examined the chest x-rays and then came back with her report. The bloodflow to his lungs is definitely un-even. How un-even? They can’t tell from the x-ray. What they are going to have to do is do another one, but this time with an IV with special tracers so that they can tell how much is going to each lung.
If it is 60/40ish… no problem.
If it is 80/20… no problem now, but it could be a problem when he’s an adult. She’s now looking 20-40 years down the road for him. She mentioned that she’s overly cautious and conservative, and this we know.
If things are fine: great, no problem.
If there is something that needs to be fixed, then he will need to go to the cardiac cath lab to see if there is anything that can be done about it. This test that we’ll do will be within the next few months.
To prove how well he was developing, Caleb decided to show them his stuff. He sat up, held his head up very nicely, and then rolled over. Yes, he rolled from his back to his front. He was so surprised and shocked that he let out a yell. I rolled him back over, and he just rolled right back on his tummy. I left him there for a moment, but he would have nothing of it.
And still… yes there is more… he wasn’t even going to leave his day alone! He and I were playing together, and I was blowing raspberries onto his tummy and giving him a little lift into the air. He had a great smile on his face. Then suddenly I lifted him up and down, and he looked at me and laughed out loud for the first time!! A real laugh!! Again it startled him so much he wasn’t sure what to make of it. He decided that was enough laughing and hasn’t made a peep yet.
Oh what a sweet boy I have!! I just don't like the fact that now I only get four hours a day with him before he's going off to bed, and only 20 minutes in the morning when we have our a.m. bottle together. Please note he gets the bottle, I just get to snuggle with him. :)
Monday, June 4, 2007
Friday check and another big day!
On our Friday weight check, the baby was 10lbs and 13oz. Huge! Well, in my opinion. In their opinion he still needs to bulk up. They're making a nicely chubby baby. Apparently he's still behind in his weight, even though he looks happy and chubby to me!
Today we went to our first Mariner's game. We didn't stay very long--there were some loud and obnoxious people in our row, and the baby couldn't get his little nap time in. You can imagine that didn't make him happy. So we moved!!
The baby sat and looked around, and was very interested in the lights and the people around him. He was watching a lot of what was going on. The last few days he's been very interested in his surroundings. It is like something just clicked and now he's noticing that his world is more than just a few feet in front of his face.
On Sunday we had his portraits taken. It was quite the adventure. We had to do all sorts of poses, and all kinds of contorting to get ourselves those shots. The pictures turned out fantastic. We're going to get them back in 7-10 days, and already have next month's appointment. We went in there with a coupon, but left with a ton of photos ordered. Oops.
Other than that... I'm tired, cranky, and logging off... :)
Today we went to our first Mariner's game. We didn't stay very long--there were some loud and obnoxious people in our row, and the baby couldn't get his little nap time in. You can imagine that didn't make him happy. So we moved!!
The baby sat and looked around, and was very interested in the lights and the people around him. He was watching a lot of what was going on. The last few days he's been very interested in his surroundings. It is like something just clicked and now he's noticing that his world is more than just a few feet in front of his face.
On Sunday we had his portraits taken. It was quite the adventure. We had to do all sorts of poses, and all kinds of contorting to get ourselves those shots. The pictures turned out fantastic. We're going to get them back in 7-10 days, and already have next month's appointment. We went in there with a coupon, but left with a ton of photos ordered. Oops.
Other than that... I'm tired, cranky, and logging off... :)
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