We're home, bathed and in bed after a long day of what was supposed to be jammed packed with fun but ended up a bit muted due to the weather. We skipped the parade, figuring a few tootsie rolls weren't worth the soaking wet kids and stuff--not how we wanted to start our day. We went over to Grandma and Grandpa's house instead and hung out there. After naps, the weather cleared some so I headed to the carnival with the girls and Greg planned to come up at dinner time and then stay the evening listening to Gavin DeGraw and then fireworks. The kids had fun riding the rides, but at $4 per ride, per kid, that was short lived. Then on to the free inflatables section and face painting. We hung out there awhile and ran into a few friends and stayed long enough to fill up on food and get wet and muddy (which utterly ruined the whole experience for Mary Kathleen--apparently she's not our outdoorsy kid!). After that we headed over to listen to the headlining act, Gavin DeGraw. About two songs into his set, Connie flicks a large bug off his neck and immediately started screaming. Turns out, it was a bee of some sort and it left it's stinger in his jugular vein! Greg got it out while I restrained the poor kid and tried to calm him down. It swelled up like a bite does and got really red, but our wiser friend told us that it was normal and if he were "allergic" he'd be having trouble breathing. He wasn't. Then we see lightning and see a storm coming from the northwest. We packed up and headed out but before we got to our car, we were pretty soaked (despite the umbrellas and all). As we were leaving the grounds, they started ushering everyone out and all those just arriving to catch the fireworks were told that the parks were closing and that the fireworks were canceled. What a bummer!
I'll try to get some pics up here soon but I used my dad's camera today and don't have the right cord to transfer them over to my computer. I hope they are good. I tried to get a lot of action shots of the girls on the "big" rides. For as meek and timid as they act most of the time, those kids are sure thrill seekers when it comes to stuff like that. I think as long as you tell Mookie it's going to be fun, she'd try anything once!
Saturday, July 4, 2009
Thursday, July 2, 2009
Update
Pretty as a picture
"We're too hot to play frisbee, Dad!"
Practicing his tiptoeing (Ms. Deb would be so proud!)
"Ummm. . .where's the waterpark? It's too hot!"
Love those tater tots!
I finally dumped the camera from his last days in the hospital and also have some pics since we've been home. I thought I'd throw them on here since it's been a few days since you've seen a cute pic!
His appetite is coming back big time! Thank the Lord! He's still a bit pickier and needs a lot of attention at mealtimes, but it is better! The wet diaper output is increasing as well-another good sign. Since we've had a bit of a break in the weather, he's found himself at the playground and outside for at least an hour or two a day. The downside is that now the pool water is colder and he isn't as into it anymore. I guess heart kids just don't like to be cold! Yesterday we packed up the bike trailer and headed to Dames park to BBQ for dinner. That was a fun field trip. Celeste did great riding her bike all the way there and back. His favorite part was the mesquite BBQ Krunchers potato chips. . .no surprise there!
We are planning on a fun holiday weekend. Tomorrow night we'll stay up late to watch the fireworks in O'Fallon and then Saturday AM the parade goes practically right in front of our house. After it is over, we'll go ride carnival rides and get faces painted, etc. and then head back for naps and to rest. After dinner we'll probably head up to the festival for more fun and fireworks again. Grandma and Grandpa are at the ready though, in case the weather doesn't stay this nice and Connie needs a break from the action. We'll be sure to post pics after the weekend too!
"We're too hot to play frisbee, Dad!"
Practicing his tiptoeing (Ms. Deb would be so proud!)
"Ummm. . .where's the waterpark? It's too hot!"
Love those tater tots!
I finally dumped the camera from his last days in the hospital and also have some pics since we've been home. I thought I'd throw them on here since it's been a few days since you've seen a cute pic!
His appetite is coming back big time! Thank the Lord! He's still a bit pickier and needs a lot of attention at mealtimes, but it is better! The wet diaper output is increasing as well-another good sign. Since we've had a bit of a break in the weather, he's found himself at the playground and outside for at least an hour or two a day. The downside is that now the pool water is colder and he isn't as into it anymore. I guess heart kids just don't like to be cold! Yesterday we packed up the bike trailer and headed to Dames park to BBQ for dinner. That was a fun field trip. Celeste did great riding her bike all the way there and back. His favorite part was the mesquite BBQ Krunchers potato chips. . .no surprise there!
We are planning on a fun holiday weekend. Tomorrow night we'll stay up late to watch the fireworks in O'Fallon and then Saturday AM the parade goes practically right in front of our house. After it is over, we'll go ride carnival rides and get faces painted, etc. and then head back for naps and to rest. After dinner we'll probably head up to the festival for more fun and fireworks again. Grandma and Grandpa are at the ready though, in case the weather doesn't stay this nice and Connie needs a break from the action. We'll be sure to post pics after the weekend too!
Monday, June 29, 2009
Finally Home!
The visit with the pediatrician went well. It was pretty much just so they could update their info with current meds, etc.
We left our house at 1:45 for Connie's 2:30 cardiology appt. and we JUST GOT HOME (at 6:45!). We had lots to go over with Dr. Bromberg and we left his office at 4:20 and headed to the outpatient pharmacy to pick up two scripts. Dr. Bromberg changed his concentration on the amiodarone and also wrote a new enalapril script since the old one had no refills left anyway and was for too low of a dose. We spent two hours at the pharmacy because #1 it takes a long time to get compounds made and #2 insurance decided to be fruit about the whole thing and deny coverage. After jumping through hoops, we were able to get out of there with the amiodarone but only got two days worth of enalapril. We'll get the rest after they battle it out a little longer.
The actual visit went well. He's not in flutter and he'd not had any high atrial rates. His INR was a little high at a 3 so we are cutting him back to 1/2 mg of coumadin on M, W and F and 1 mg on T, R, Sa and Su. We will go back to check the INR again on Monday and also get a dig level. Then we'll see Dr. Bromberg again in a month. At that time he will do a chest x-ray, echo, etc. and a complete workup. He'll also recheck the thyroid levels. After that, if he stays out of flutter we will be seen six months later and hopefully be able to assess where we are with the valves. The hope is that his LV function will be totally back to where it was by then. I brought up to him the phone call I got from the insurance company last week asking me if we've been talked to yet about heart transplant! I asked him if that was on the horizon or something. He was in shock that they would call and ask about that. He said, "That was the whole point of the double switch! We might be talking about that now had he not had it, but as long as his LV function is good, that is not on the list of things to do." That helped me breathe easier. He said that our goal is to not have to do anything with the valves until they go back in to replace the conduit and hopefully, valve repair would be possible, rather than replacement. He just doesn't want to even think about the need for mechanical valves at this point and the whole host of new issues that would bring. He also said that he is pretty sure that in six months, if we have not had any more flutter, that he'd be able to cut Connie's amiodarone dose down some as he feels that Connie is pretty sensitive to the drug.
I guess that's all for now. Connie's getting ready for a swim and was such a good boy on his long day of visits. He got a little restless a few times, but granola bars and iPods did the trick.
Thanks for checking in and thanks for the prayers today and everyday!
We left our house at 1:45 for Connie's 2:30 cardiology appt. and we JUST GOT HOME (at 6:45!). We had lots to go over with Dr. Bromberg and we left his office at 4:20 and headed to the outpatient pharmacy to pick up two scripts. Dr. Bromberg changed his concentration on the amiodarone and also wrote a new enalapril script since the old one had no refills left anyway and was for too low of a dose. We spent two hours at the pharmacy because #1 it takes a long time to get compounds made and #2 insurance decided to be fruit about the whole thing and deny coverage. After jumping through hoops, we were able to get out of there with the amiodarone but only got two days worth of enalapril. We'll get the rest after they battle it out a little longer.
The actual visit went well. He's not in flutter and he'd not had any high atrial rates. His INR was a little high at a 3 so we are cutting him back to 1/2 mg of coumadin on M, W and F and 1 mg on T, R, Sa and Su. We will go back to check the INR again on Monday and also get a dig level. Then we'll see Dr. Bromberg again in a month. At that time he will do a chest x-ray, echo, etc. and a complete workup. He'll also recheck the thyroid levels. After that, if he stays out of flutter we will be seen six months later and hopefully be able to assess where we are with the valves. The hope is that his LV function will be totally back to where it was by then. I brought up to him the phone call I got from the insurance company last week asking me if we've been talked to yet about heart transplant! I asked him if that was on the horizon or something. He was in shock that they would call and ask about that. He said, "That was the whole point of the double switch! We might be talking about that now had he not had it, but as long as his LV function is good, that is not on the list of things to do." That helped me breathe easier. He said that our goal is to not have to do anything with the valves until they go back in to replace the conduit and hopefully, valve repair would be possible, rather than replacement. He just doesn't want to even think about the need for mechanical valves at this point and the whole host of new issues that would bring. He also said that he is pretty sure that in six months, if we have not had any more flutter, that he'd be able to cut Connie's amiodarone dose down some as he feels that Connie is pretty sensitive to the drug.
I guess that's all for now. Connie's getting ready for a swim and was such a good boy on his long day of visits. He got a little restless a few times, but granola bars and iPods did the trick.
Thanks for checking in and thanks for the prayers today and everyday!
Sunday, June 28, 2009
Busy Day Tomorrow
Tomorrow we have a very busy day. Our fridge died on Friday so our new one (well, new to us--we got it from a used appliance store) is being delivered in the morning.
After that we are off to see the pediatrician and then a couple hours later the cardiologist. The plan is to do an ekg, possibly an interrogation, and just a good look-over. I don't think an echo is on the schedule, so hopefully it won't be a two+ hour visit. Really it can be as long as it needs to be to make sure he's fine. We'd appreciate all the positive prayers and thoughts we can get. We've got a couple of med questions to go over and lab results and such and hopefully no surprises. Somewhere in there we'll have to get to the grocery store and restock.
Not much to report. Connie is finally in love with swimming! He spent two straight hours in the pool Saturday evening and another hour late this morning. His favorite thing to do is be thrown up in the air. He also likes to pretend to push Cece down over and over. He is really improved by leaps and bounds in his balance and his ability to stay upright even when the waves kind of knock him around. I think regular time in the water will be good for his gross motor development. The water goes all the way up to his chest! He spent a lot of time indoors last week because of the outrageous heat but we went to the park today and he fell asleep in the swing. His appetite is pretty hit or miss and he keeps throwing us little curve balls that make us keep an extra close eye on him, but so far, so good.
We'll update after the appts.
After that we are off to see the pediatrician and then a couple hours later the cardiologist. The plan is to do an ekg, possibly an interrogation, and just a good look-over. I don't think an echo is on the schedule, so hopefully it won't be a two+ hour visit. Really it can be as long as it needs to be to make sure he's fine. We'd appreciate all the positive prayers and thoughts we can get. We've got a couple of med questions to go over and lab results and such and hopefully no surprises. Somewhere in there we'll have to get to the grocery store and restock.
Not much to report. Connie is finally in love with swimming! He spent two straight hours in the pool Saturday evening and another hour late this morning. His favorite thing to do is be thrown up in the air. He also likes to pretend to push Cece down over and over. He is really improved by leaps and bounds in his balance and his ability to stay upright even when the waves kind of knock him around. I think regular time in the water will be good for his gross motor development. The water goes all the way up to his chest! He spent a lot of time indoors last week because of the outrageous heat but we went to the park today and he fell asleep in the swing. His appetite is pretty hit or miss and he keeps throwing us little curve balls that make us keep an extra close eye on him, but so far, so good.
We'll update after the appts.
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