Caleb, grandma and I participated in the Seattle Heart Walk this weekend. It is one of the largest walks in the nation in both participation and donations. Due to the traffic getting to the walk, we were running a little late. We didn't get there until after 8:30, but that turned out to be perfect. Most everyone was in the stands so we got to walk around the outside area without too many people.
We picked up a red hat (the "survivor hat") for Caleb and for grandma. Then we went and wrote a sign about who we were walking for. It said, "I am walking for..." and we crossed out "walking" and put in "rolling." Caleb was rolling for himself, and grandma had one that said she was walking for her grandson. I just was there to push the stroller! hehe
As we started the course, there were tons of people just streaming out of Quest field (where the Seahawks play). We had the choice of doing a 3.5 mile route or a 1 mile route. Well, as we were decided if we should walk up the viaduct or not, we were stopped by a reporter from the PI that wanted to talk to grandma about why she was walking. I pointed to the baby. "This is why we are walking." He was surprised to see a survivor so young (although I'm sure there were others there.) He interviewed us, and then walked along the route with us.
We ended up chosing the 1 mile route because we got so far behind with the interviewer--we were actually some of the last people to finish. We were at the end, but did pass two old ladies with canes and a little boy with a brace on his leg--if that tells you how far behind we were. hehe In any case, we finished the walk and were a little like, "Wow, that was quick" because we took the short route.
It did keep us dry, though, because those who took the 3.5 mile walked on top of the viaduct and we walked underneath. We got back before the majority of the crowd and were able to walk around the booths, etc, in Quest field. We crossed the finish line and got our photo taken. It was cool. :)
After that we decided to take off because Caleb fell asleep, and just then everyone from the 3.5 mile was coming back. We just missed the crowds! Whew. We were able to leave without a big lineup. We lucked out on our timing.
Overall, Caleb managed to raise $200 for the heart walk. Not bad for a 6 month old. Thank you to everyone that helped us out. We very much appreciate your support!
I'll be looking in the Seattle P.I. for Caleb's story tomorrow!!!
Saturday, October 6, 2007
Monday, October 1, 2007
Doctors Appointment!
Caleb had his regular check-up with his cardiologist last Wednesday. He was cranky and tired because we woke him up, didn't feed him, then drug him to the doctor's office. He told the lady who was weighing and measuring him all of his troubles, and didn't let her get a blood pressure. I was worried about our start as his screams filled the building!!
But we got thru (apparently he's about 16.5lbs, although he wasn't cooperating too well...) and to Colleen, who does our echos. We had breakfast with Colleen, and she popped in a Baby Einstein video to keep him entertained. He wasn't sure which he liked more--the movie on the tv or the images of his heart on the screen. He layed there and she got all of the shots that she needed for once! They were even to see the left side of his heart!!
What they discovered:
~All TGA repairs leak at the suture sites--his are leaking at a very low rate so this is good
~His flow to the left lung is still open
~The flow is still asymmetrical
~The pressures on his right side of his heart are doing very well
~His blood pressure and EKG was very good
As his cardiologist said, "This is just a good news visit!" Yay!
Then we went to the eye doctor. Ha... the little guy had to throw me a curve ball. His eyes are normal vision for his age (which is slightly far sighted). That's good news. He is using both eyes equally. That is good news. He, however, only uses one eye at a time. The other one goes "out." Their suggestion? If it doesn't get better in a month: surgery.
Oh little bug... let's not do any further surgery! The eye doctor did say that his farsightedness will help it improve if it does improve. Is there a history of this in the family, he asks? No... my little guy is apparently a trend setter! LOL
My idea is that while he was in the hospital, he didn't have enough things to focus on, so his eyes got behind. And now it might be too late to get them back without a serious intervention. Guu.
But we got thru (apparently he's about 16.5lbs, although he wasn't cooperating too well...) and to Colleen, who does our echos. We had breakfast with Colleen, and she popped in a Baby Einstein video to keep him entertained. He wasn't sure which he liked more--the movie on the tv or the images of his heart on the screen. He layed there and she got all of the shots that she needed for once! They were even to see the left side of his heart!!
What they discovered:
~All TGA repairs leak at the suture sites--his are leaking at a very low rate so this is good
~His flow to the left lung is still open
~The flow is still asymmetrical
~The pressures on his right side of his heart are doing very well
~His blood pressure and EKG was very good
As his cardiologist said, "This is just a good news visit!" Yay!
Then we went to the eye doctor. Ha... the little guy had to throw me a curve ball. His eyes are normal vision for his age (which is slightly far sighted). That's good news. He is using both eyes equally. That is good news. He, however, only uses one eye at a time. The other one goes "out." Their suggestion? If it doesn't get better in a month: surgery.
Oh little bug... let's not do any further surgery! The eye doctor did say that his farsightedness will help it improve if it does improve. Is there a history of this in the family, he asks? No... my little guy is apparently a trend setter! LOL
My idea is that while he was in the hospital, he didn't have enough things to focus on, so his eyes got behind. And now it might be too late to get them back without a serious intervention. Guu.
Tuesday, September 4, 2007
Lung Scan Results
So... we went to Children's for the lung scan. It was pretty uneventful. Caleb doesn't think much of getting IVs, but he does seem to like the test. He let the nurses velcro him into place without much issue. When the cameras came down he looked at them and even pet them a little bit. After a while he decided things were too boring and went to take a nap.
I figured out why I thought I saw two functioning lungs on the scan. It turns out that the camera takes a front and a back view. What I thought was two lungs was the right lung forwards, and then the right lung backwards. There should really be four lungs on the screen. This time he did indeed have four, which meant that the balloon worked and his lungs were functioning.
After several days (hey, wait, weren't we supposed to find out that day?? Why yes, yes we were!) we found out that his lung blood distribution wasn't as even as we had hoped. They were hoping for 70/30 (55/45 is normal). Caleb turned out a 87/13.
But this means something good: The ballooned artery is still open.
The next step was supposed to be a stent and surgery, but the doctors at Children's got together to discuss what to do. They were faced with the probability that the ballooning would close again. The right side of his heart, however, was showing no signs of strain from pumping the blood unevenly. The key turned out to be what was going on *after* the block.
For some reason, Caleb's blood vessels are larger than normal. Not good, not bad, it just is what it is. But because of this, they want to put off the surgery. They are still hopeful that this bloodflow can grow.
I'm talking to him nearly every night about this. He is definitely working on growing up! He's getting huge. He's glad that he doesn't have to have any more operations at the moment. And so am I.
They are going to be watching this very closely (big surprise there!). If everything stays open, they're going to see what develops. If it doesn't stay open, they'll take further action, which will probably be a stent through the chest wall. September 26th is our next appointment. So let's hope that things keep growing like he does. :)
I figured out why I thought I saw two functioning lungs on the scan. It turns out that the camera takes a front and a back view. What I thought was two lungs was the right lung forwards, and then the right lung backwards. There should really be four lungs on the screen. This time he did indeed have four, which meant that the balloon worked and his lungs were functioning.
After several days (hey, wait, weren't we supposed to find out that day?? Why yes, yes we were!) we found out that his lung blood distribution wasn't as even as we had hoped. They were hoping for 70/30 (55/45 is normal). Caleb turned out a 87/13.
But this means something good: The ballooned artery is still open.
The next step was supposed to be a stent and surgery, but the doctors at Children's got together to discuss what to do. They were faced with the probability that the ballooning would close again. The right side of his heart, however, was showing no signs of strain from pumping the blood unevenly. The key turned out to be what was going on *after* the block.
For some reason, Caleb's blood vessels are larger than normal. Not good, not bad, it just is what it is. But because of this, they want to put off the surgery. They are still hopeful that this bloodflow can grow.
I'm talking to him nearly every night about this. He is definitely working on growing up! He's getting huge. He's glad that he doesn't have to have any more operations at the moment. And so am I.
They are going to be watching this very closely (big surprise there!). If everything stays open, they're going to see what develops. If it doesn't stay open, they'll take further action, which will probably be a stent through the chest wall. September 26th is our next appointment. So let's hope that things keep growing like he does. :)
Monday, August 13, 2007
General Check Up!
On Friday, Caleb saw his regular doctor. Why?? Just the standard 4 month check up. Whew!
How nice just to have a normal check-up. :) I had my check-up earlier in the day, and then it was Caleb's turn. He was pretty excited about the whole thing.
He watched the nurses and the doctor, very interested in what they were up to. He was weighed and measured without issue. He is now 14.5 lbs and 26 inches long! That bumps him up to the 50th percentile in weight (from the 25th). His height was in the 50th percentile, but that was also boosted up to the 70th percentile! Whoa! Go baby!
Apparently with all this extra O2 that he's getting, he's going to use it to grow like a little weed. :)
He also showed off, slapping his feet down onto the paper they had on the exam table. It was very loud to talk to the doctor over the sounds of the laughing and squeeling. He thought the whole exam was a great play-date with the doctor. I hadn't seen him have that great of a time before!
Of course, all good things must come to an end, and his friend the nurse betrayed him by sticking him with not one, not two, but THREE needles. Oh, the little one cried. He was so betrayed and hurt, and just didn't know what to do. He hollared for a little while, and finally calmed down.
The next few days he was grumpy and achy.
It didn't stop us from trying his first solid foods, however! At the doctor's office we got the okay for him to start rice cereal. On Sunday evening I pulled up a chair, put him in his "Bumbo" and showed him the bowl and spoon. Caleb thought they were pretty funny. He thought the camera in his face was pretty funny, too. He laughed as the spoon was getting filled, and watched it as it came towards his mouth. In it went... and the little one gagged. Apparently he thinks rice cereal tastes as good as I think it does!!!
Well, the gagging stopped, and we have lots of pictures of a smiling boy with rice cereal dripping down his chin, his shirt, his sleeves, his hands and.... well, almost everything else! He did very well, and actually did get a few bites to eat before he got angry with the whole process. He was hungry and wanted food. Silly guy didn't realize he was already eating!
The little guy is in bed now, and I think I will get some sleep, too. Ta! :)
Or as Caleb would say: UNGOWA!
How nice just to have a normal check-up. :) I had my check-up earlier in the day, and then it was Caleb's turn. He was pretty excited about the whole thing.
He watched the nurses and the doctor, very interested in what they were up to. He was weighed and measured without issue. He is now 14.5 lbs and 26 inches long! That bumps him up to the 50th percentile in weight (from the 25th). His height was in the 50th percentile, but that was also boosted up to the 70th percentile! Whoa! Go baby!
Apparently with all this extra O2 that he's getting, he's going to use it to grow like a little weed. :)
He also showed off, slapping his feet down onto the paper they had on the exam table. It was very loud to talk to the doctor over the sounds of the laughing and squeeling. He thought the whole exam was a great play-date with the doctor. I hadn't seen him have that great of a time before!
Of course, all good things must come to an end, and his friend the nurse betrayed him by sticking him with not one, not two, but THREE needles. Oh, the little one cried. He was so betrayed and hurt, and just didn't know what to do. He hollared for a little while, and finally calmed down.
The next few days he was grumpy and achy.
It didn't stop us from trying his first solid foods, however! At the doctor's office we got the okay for him to start rice cereal. On Sunday evening I pulled up a chair, put him in his "Bumbo" and showed him the bowl and spoon. Caleb thought they were pretty funny. He thought the camera in his face was pretty funny, too. He laughed as the spoon was getting filled, and watched it as it came towards his mouth. In it went... and the little one gagged. Apparently he thinks rice cereal tastes as good as I think it does!!!
Well, the gagging stopped, and we have lots of pictures of a smiling boy with rice cereal dripping down his chin, his shirt, his sleeves, his hands and.... well, almost everything else! He did very well, and actually did get a few bites to eat before he got angry with the whole process. He was hungry and wanted food. Silly guy didn't realize he was already eating!
The little guy is in bed now, and I think I will get some sleep, too. Ta! :)
Or as Caleb would say: UNGOWA!
Wednesday, August 8, 2007
Updates
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.
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.
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. :)
Subscribe to:
Posts (Atom)