I was just about to post an update from the ER waiting room when Dr. Bromberg walked in for us, and I already typed all the events, etc. out once on a heart forum we belong to so you'll have to bear with me tonight. It is late and I am spent emotionally so I am just going to cut and paste.
We've had a roller coaster week. Wednesday night after the cardioversion, he did great and then woke up at midnight completely panicky. All day Thursday he was fussy, clingy, whiny and miserable. We called and went in for an interrogation. Better be safe than sorry, right. No flutter. Went home. By 4:00 he was a mess, sweaty, uncomfortable, no energy or appetite. Decided we'd call this AM if he had a rough night. He had a great night! Slept 11 hours. Woke up cheerful. Played, aggravated big sister. Seemed better. Then took morning nap (unusual). I had an eyebrow raised and had that behavior under a microscope but then he ate a plate and a half of scrambled eggs so I thought he was fine. Played all afternoon but again by dinner acted completely miserable and just like the day before, getting clammy and so on. He ate nothing at dinner but did have some chocolate milk. Two hours later bigtime vomiting. Called exchange and Dr. Goel (on call) called Dr. Bromberg right away. Dr. Bromberg called us back and said to meet him at St. John's and we'd go into the office in interrogate again. I feel like an idiot and like I'm wasting their time, but he reassured me that at this point, it is necessary and warranted. He thought the same thing when Dr. Goel told him Connie was vomiting-that he was in flutter again.
Connie is not in atrial flutter again, but is having symptoms of heart failure. We are home now but go back in Monday for the full work up; x-ray, echo, the works. Dr. Bromberg is now leaning toward the thought that it is not the flutter causing the CHF, rather there may be some worsening of the valve issues and it may be time to do something surgically about that. Since he is symptomatically as bad as he was in May with fussiness, sleepiness, vomiting and BNP over 7000, even with being out of flutter since 6/17 and only having three days in and out of it earlier this week, it is pointing more toward another cause. So now we wait and see. He said as we parted in the parking lot, "It's not going to be like this forever. We will get past this." I just keep trying to say that over an over to myself.
We appreciate your continued prayers and support. . .we'll update after we learn the results of Monday's examination and tests. I did ask Dr. Bromberg what happens if his echo looks the same as the last one, same as the one from November when he was clinically in very good shape, yet he continues to be symptomatic. He said that the echo is a tool, but it is not the only indicator and we won't let this go on much longer, meaning we'd have to do something. We just don't yet have a plan for what that "something" is.
Friday, July 24, 2009
Wednesday, July 22, 2009
Bedtime Update/Dosing Change
We got right back into our routine of Connie going to sleep on his own. He did great for his nap and bedtime tonight. That's a huge relief. Can't stand the tears knowing he might not feel 100%.
Dr. Bromberg emailed me this evening to make one dosing change on the amio. For the next five days, he's going to get twice his current dose, to try to get it in his system more quickly (trying to ward off a relapse). After that, we'll go to the 20cc's, up from the current 12.9cc's. Also, he said that one thyroid test from today was out of the normal range and the other one was still pending at the lab. He's going to talk to an endocrinologist and possibly start supplementing him with a thyroid medication. Ugh. Also, I had reminded him this morning that he had said he wanted to follow the BNP level in Connie so as long as he was getting labs, he said to go ahead and add that to the list. That level is the one that detects/rates the amount of heart failure. Remember back in May when he had it done and "normal" is less than 100, severe heart failure is 900 and his May level was 7000! Today's level was over 7000 again. Unfortunate, and definitely a bit concerning, but he doesn't really know what to think of that number because we knew he was in flutter with impending clinical signs of failure anyway. Research that says what the numbers mean are done on adults anyway, not kids with CHD. Still, we have a record of it and can follow it. I think last month when he was in Children's the number was only around 800 and he was clinically doing worse. He was vomiting then and his liver was bigger. So, see? Who really knows what to make of it?!
We're calling on Friday to find out more about the thyroid thing.
Thanks again for praying. God is an awesome God and we continue to trust that He knows best.
Dr. Bromberg emailed me this evening to make one dosing change on the amio. For the next five days, he's going to get twice his current dose, to try to get it in his system more quickly (trying to ward off a relapse). After that, we'll go to the 20cc's, up from the current 12.9cc's. Also, he said that one thyroid test from today was out of the normal range and the other one was still pending at the lab. He's going to talk to an endocrinologist and possibly start supplementing him with a thyroid medication. Ugh. Also, I had reminded him this morning that he had said he wanted to follow the BNP level in Connie so as long as he was getting labs, he said to go ahead and add that to the list. That level is the one that detects/rates the amount of heart failure. Remember back in May when he had it done and "normal" is less than 100, severe heart failure is 900 and his May level was 7000! Today's level was over 7000 again. Unfortunate, and definitely a bit concerning, but he doesn't really know what to think of that number because we knew he was in flutter with impending clinical signs of failure anyway. Research that says what the numbers mean are done on adults anyway, not kids with CHD. Still, we have a record of it and can follow it. I think last month when he was in Children's the number was only around 800 and he was clinically doing worse. He was vomiting then and his liver was bigger. So, see? Who really knows what to make of it?!
We're calling on Friday to find out more about the thyroid thing.
Thanks again for praying. God is an awesome God and we continue to trust that He knows best.
All Done
Connie kept telling them he was "all done" while they were trying to get everything set up. Well, now he actually is all done. He is getting a 12-lead EKG while we speak and once he wakes up from sedation, we'll get a little something to drink and be on our way home. He was cardioverted in only one attempt. The plan is to up his dose to 20mls of amiodarone.
We had the "where do we go from here" talk and basically there are several scenarios that might play out. If he has another breakthrough, the potential is there for catheter ablation attempt and even surgery. Dr. Bromberg is going to plan as if that will happen and he's going to start consulting with Dr. VanHare and Dr. Balzer at Children's and Dr.s Bove and Dick at U of M. I'm glad he's planning ahead and getting everyone to put their minds to work about it, but I sure don't like hearing that we might be looking at O.R. time again. The problem with ablation is it would be very difficult with his anatomy. While it is risky, etc. Dr. Bromberg said, "We can't keep doing this." (cardioversion) There's a lot more to what he said and he did a very good job of explaining the pros and cons of each potential outcome, but I don't feel up to recanting it all right now. The kind of good news is that Dr. VanHare has a pretty neat technique where he actually has the interventionist (Dr. Balzer) put a hole in one of the baffles to allow for better access. I'll post more about it all when/if the time comes.
Connie's now trying some teddy grahams and chocolate milk.
Thanks for your prayers.
We had the "where do we go from here" talk and basically there are several scenarios that might play out. If he has another breakthrough, the potential is there for catheter ablation attempt and even surgery. Dr. Bromberg is going to plan as if that will happen and he's going to start consulting with Dr. VanHare and Dr. Balzer at Children's and Dr.s Bove and Dick at U of M. I'm glad he's planning ahead and getting everyone to put their minds to work about it, but I sure don't like hearing that we might be looking at O.R. time again. The problem with ablation is it would be very difficult with his anatomy. While it is risky, etc. Dr. Bromberg said, "We can't keep doing this." (cardioversion) There's a lot more to what he said and he did a very good job of explaining the pros and cons of each potential outcome, but I don't feel up to recanting it all right now. The kind of good news is that Dr. VanHare has a pretty neat technique where he actually has the interventionist (Dr. Balzer) put a hole in one of the baffles to allow for better access. I'll post more about it all when/if the time comes.
Connie's now trying some teddy grahams and chocolate milk.
Thanks for your prayers.
Starting
They just got underway. They said "he's a fighter" regarding his nonstop crying whenever anyone came in his room. He got his propafal and drifted off with no dropping sats so we left.
We're here
And all checked in to rm5 of the PICU. Connie's watching Diego while we wait for admitting to come up and get our info.
Tuesday, July 21, 2009
Home from the Appt.
Dr. Bromberg made a special trip in to the office to see his favorite patient today. We got there two minutes before the doctor and he came out himself to the waiting room to get us. Connie was interrogated where he was found to be in atrial flutter AGAIN (insert frustrated sigh). He tried to pace him out of it, but Connie didn't like that too much. A couple of attempts was all he could take. It was making his A rate 300ish and his V rate 150ish. So now we're all set up for cardioversion tomorrow morning at St. John's. He'll be admitted to the PICU at 7am and the procedure should be at 9am. Hopefully we'll be outpatient as long as Connie doesn't throw any curve balls in there. While they are starting the IV, they will draw a bunch of labs to check liver and thyroid function and get another INR level. If the labs show he's tolerating the current amiodarone dose, meaning it isn't hurting those other systems, then his dose will be increased 50% so he'll be taking close to 20 ml! I joked with him that I'd have to put it in a juice cup now instead of a syringe. The other frustrating thing about all this is that the mode switch was not switching again on the pacemaker. That is getting really irritating and tomorrow when we get more time to talk to him, I'm going to really press for some answers on that one. This is getting really old, making these monthly hospital trips. The good news is that while this is frustrating and a little scary, it's not nearly as scary as surgery or something really invasive. I'm so grateful we're not talking about that now.
High Atrial Rates Again. . .Waiting
Well, Connie has been showing signs of something being awry since Saturday. We've been told recently to see if he strings together a few days of that, since sometimes regular, healthy toddlers can have "off" days. Well, after three days of a poorer appetite, clingy behavior and extra sleepiness, we sent in a pacemaker transmission. Sure enough, he's been having high atrial rates since Saturday, on and off. One episode this morning at 12:30am lasted over 47 minutes. Then again at 2:00am he had another period lasting 30 some minutes. Colleen at Dr. Bromberg's office read the report while I was still on the phone and said she has some questions about it and would page Dr. Bromberg. She called back and said to come in. So now we are going in this afternoon sometime between 2-4. She said he'll probably interrogate the pacemaker again and then decide what to do from there. She reiterated that we shouldn't hesitate to call, even if we feel like we're being hypochondriacs! She said, "Especially with him!! Just call. Better to be safe than sorry." Please pray that God will guide Dr. Bromberg to make the right decisions for Connie and that we can avoid any invasive procedures. I'm not quite sure what the next step is when the medication isn't effective. Is it more medicine? Is it attempting the risky ablation? Who knows.
Saturday, July 18, 2009
Opthamology Appointment
Connie went to the eye doctor yesterday morning and afternoon. Did he go twice, you ask? The answer is no, but his appointment was in the morning and we didn't leave there until the middle of the afternoon! We originally had an appt. for back in June, but Connie was inpatient at Children's then and we had to reschedule. The closest appt. time they could give us was for a month later, which we took. Our appt. was for 11:00 am. By 12:15, we still hadn't even been called back. Finally, we got called back around 12:30. We were back there for five minutes (at most) and the optometrist dilated his eyes and sent us back to the waiting room (which was overcrowded and had no seats available except on the floor). We went for a walk down the halls and came back in. About 40 minutes later, they called us back again and the same guy looked at Connie's eyes. After five more minutes of looking at his eyes, they sent us back out to the waiting room until the doctor was ready to see us. At 1:42 they called us back into the room where we waited until 2:00pm to be seen by the doctor. He came in and said that Connie's eyes are worse in relation to the far sightedness. Since he's non-compliant, meaning he isn't cooperating wearing the glasses, he's letting us go another six months without them. If, at that time, they are still getting worse or are not better, then he will need surgery to correct the far sightedness. It is laser surgery and is the same thing adults get (lasik). I asked if he was comfortable doing this on a cardiac patient and he said he's only under anesthesia for 20 minutes for this procedure. So, we'll see what happens when the time comes. The thought of surgery makes me a bit nervous, but it does seem better than a lifetime of glasses.
Thursday, July 16, 2009
No new meds
So, tonight at dinner, Connie was standing on the back of the restaurant high chair and it tipped backward and cracked him in the mouth. It cut the little skin between his gums and upper lip. We were worried it wouldn't stop bleeding with him being on Coumadin. Luckily, it did stop bleeding and he didn't seem terribly upset about it or act like it was hurting him so we dismissed it. A couple hours later, it occurred to me that he had a cut in his mouth and there might be a risk of bacteria entering the bloodstream which might lead to endocarditis (infection in the heart). I know when he goes to the dentist, he'll have to take antibiotics ahead of time to prevent this and so I called the doctor to see if he needed to be put on something in this case. Dr. Bromberg said that studies actually show that the bacteria that enters the blood stream during dental procedures leaves the body within 45 minutes, which is why the drugs need to be on board ahead of time. So, by the time I called, any bacteria would have already left his body, meaning there is no need for an antibiotic AFTER a cut in the mouth. He jokingly said that the thing to do next time is to put him on antibiotics BEFORE he hurts himself (ha ha). We do keep it interesting though, huh??
Ella has been rescheduled for her double switch on Friday, July 31. Please plan to join us again in prayer.
Ella has been rescheduled for her double switch on Friday, July 31. Please plan to join us again in prayer.
Wednesday, July 15, 2009
Ella Update
Our little L-TGAer who was to undergo her double switch with Dr. Bove today ended up having her surgery canceled moments before they took her back to the OR. Her parents already had their gowns on and everything to carry her in. An emergency case came in that required ECMO (longer term bypass) and it was the last ECMO unit in the hospital. Dr. Bove did not feel comfortable doing the operation without having one of those units as a backup in case her little body needed it after the surgery. So, now her parents will have to ride the emotional roller coaster a little longer. As rough as it is to be delayed, I'm sure they are relieved that she was not that emergency case. That kind of helps to put it in perspective.
I'll update to let you know when they get a new date for surgery. Dr. Bove was going to try to move some things around in his schedule to try to get them in in about two weeks.
To update a bit on Connie, he's had four nights now of "tough love" where we've been letting him cry and when he wakes up at night we've not been going in. So far, so good. He's down to crying for less than 10 minutes and only waking up once or twice and turning his music back on and going back to sleep on his own. It's such a relief! Now if we can just get him to stop demanding Cheez-its for every meal or snack we'll be getting somewhere!
I'll update to let you know when they get a new date for surgery. Dr. Bove was going to try to move some things around in his schedule to try to get them in in about two weeks.
To update a bit on Connie, he's had four nights now of "tough love" where we've been letting him cry and when he wakes up at night we've not been going in. So far, so good. He's down to crying for less than 10 minutes and only waking up once or twice and turning his music back on and going back to sleep on his own. It's such a relief! Now if we can just get him to stop demanding Cheez-its for every meal or snack we'll be getting somewhere!
Tuesday, July 14, 2009
All Star Parade
So the All Star Game returned to St. Louis and, although we had no tickets, we didn't want to completely miss out on the festivities. After lunch with Great Grandma O'Leary and a short visit, I headed downtown with the kids and the double stroller ready to take on the crowds and fun. We found a meter close by and only had to walk three blocks. We found a second row spot to camp out in and watch the parade. Unfortunately, neither of the kids is old enough yet to really understand or get into the excitement of the event. Mookie was looking forward to a parade and she assumed (as did I) that it would at least be of the caliber of the O'Fallon 4th of July parades that she has become accustomed to year after year. She was disappointed when not one single sugary bit of sustenance came flying at her or anyone else for that matter. And by the time the parade participants got to our end of the route, there were few souvenirs left to be thrown. A 12 year old girl in front of us caught a little soft logo ball that was thrown and gave it to Mary Kathleen. Mary Kathleen sat on my shoulders and Connie spent most of the time playing with the iPod in the stroller! Both of them fell asleep a little more than halfway through the parade. On our way back to the car, we ran into Aunt Barb and her gang of kids and grand kids. We chatted with them for a minute and then headed on back home. After I got everyone safely packed in the car and navigated my way (without a GPS) back to Hwy 70, I honestly felt like Superwoman or something; like I could take on the world!! I don't even like going to the grocery store with both of them so I was shocked that taking them to this wasn't a complete disaster! The camera ran out of battery before the current all-stars even drove by, but I managed to get a few pics. Enjoy!
The Wizard and Bruce Sutter
Is it naptime yet?
Mookie with her one and only souvenir (courtesy of another fan)
Pittsburgh's mascot
The Wizard and Bruce Sutter
Is it naptime yet?
Mookie with her one and only souvenir (courtesy of another fan)
Pittsburgh's mascot
Saturday, July 11, 2009
Friday, July 10, 2009
Haircut
MookieRoo at the St. Louis Zoo
Yes, the goat did take a bite of her skirt
Happy baby
Our little tinkerer
"cheese"
Do you like the new background? I thought it was a nice touch since we're having the All-Star Game here in StL next week!
Connie got his haircut yesterday and is now very handsome again! He cried the whole time:( Afterward, Laurie gave him some Smarties so maybe he'll associate getting candy with going there and remember that next time.
We have experienced first hand the power of prayer and so I ask you all to join us in praying for Ella, a fellow L-TGAer who will be undergoing her Double Switch (actually a Rastelli-Senning--the same exact thing Connie had) next Wednesday, 7/15 at 8:30am. She is three years old and a lot more aware than Conway was when he had his. She will be at Mott and her surgeon is Dr. Bove. Please ask God to guide the medical staff and give comfort to her parents and five siblings during these next few weeks. Drop by her carepage at www.carepages.com and "visit" carepage name: EllaMallon and leave a message of support for her family. As you can imagine, they are getting quite anxious. The messages we used to get literally carried us during those trying times so just know that words on a page do mean a lot, even to strangers.
Yes, the goat did take a bite of her skirt
Happy baby
Our little tinkerer
"cheese"
Do you like the new background? I thought it was a nice touch since we're having the All-Star Game here in StL next week!
Connie got his haircut yesterday and is now very handsome again! He cried the whole time:( Afterward, Laurie gave him some Smarties so maybe he'll associate getting candy with going there and remember that next time.
We have experienced first hand the power of prayer and so I ask you all to join us in praying for Ella, a fellow L-TGAer who will be undergoing her Double Switch (actually a Rastelli-Senning--the same exact thing Connie had) next Wednesday, 7/15 at 8:30am. She is three years old and a lot more aware than Conway was when he had his. She will be at Mott and her surgeon is Dr. Bove. Please ask God to guide the medical staff and give comfort to her parents and five siblings during these next few weeks. Drop by her carepage at www.carepages.com and "visit" carepage name: EllaMallon and leave a message of support for her family. As you can imagine, they are getting quite anxious. The messages we used to get literally carried us during those trying times so just know that words on a page do mean a lot, even to strangers.
Tuesday, July 7, 2009
Results
Connie's dig level was low (only .6, I think--not sure what is ideal on that one though) so we bumped up his twice daily dose to 0.7 mls. His coumadin was 1.9 and they would like him to be in the 2-3 range (but closer to 2) so Dr. Bromberg is leaving him at the current dose of 1mg on T, Th, Sa and Su and 1/2 mg on M, W and F.
That's about all the news for today. I took Mary Kathleen to the zoo while Connie stayed with Grandma and Grandpa (he's been kinda whiny again lately. . .we did send in a pacemaker transmission just to give us some peace of mind and it looks okay, thank God!). She had the most fun on the carousel where she rode on, you guessed it, the rabbit!
He's back to asking to eat chips all the time. I hate that. Reminds me of what he does whenever he's sick (as in heart sick, not the sniffles).
That's about all the news for today. I took Mary Kathleen to the zoo while Connie stayed with Grandma and Grandpa (he's been kinda whiny again lately. . .we did send in a pacemaker transmission just to give us some peace of mind and it looks okay, thank God!). She had the most fun on the carousel where she rode on, you guessed it, the rabbit!
He's back to asking to eat chips all the time. I hate that. Reminds me of what he does whenever he's sick (as in heart sick, not the sniffles).
Monday, July 6, 2009
Lab Visit
Connie just got home from getting his blood drawn. Today they were checking his INR level as well as getting a Digoxin level. Dr. Bromberg mentioned last time that he thought his dig level would be low since they cut his dose in half, but they had to because of the chance of toxicity now that the amiodarone has been started so they will see where his level is now and then adjust his dose if necessary to get him in the therapeutic range. Hopefully these will be our last labs. If everything is in the right range, then we'll just stay on the current doses and possibly come off the coumadin in early August. If the numbers are too high or low, they'll have to adjust the dose and then recheck it again probably in about a week.
He tried to be a brave boy but he now recognizes the place and started to cry and ask for home as soon as we walked in. It was so sad! He got rewarded with a quick visit to Grandma and Grandpa's for a swing and some cookies--they live right around the corner from the lab. If anything changes after I talk to the Dr.'s office tomorrow I'll post another update.
He tried to be a brave boy but he now recognizes the place and started to cry and ask for home as soon as we walked in. It was so sad! He got rewarded with a quick visit to Grandma and Grandpa's for a swing and some cookies--they live right around the corner from the lab. If anything changes after I talk to the Dr.'s office tomorrow I'll post another update.
Sunday, July 5, 2009
Saturday, July 4, 2009
Festivities
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!
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!
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.
Tuesday, June 23, 2009
Breathing Easier
Dr. Bromberg wanted us to come on in so he could look at him himself and do a pacemaker interrogation to be sure he's not back in flutter. He just doesn't trust the pacemaker settings to tell us he is any other way just yet (like over the phone transmission). So, we went in and Dr. Bromberg confirmed that he is NOT IN FLUTTER!!! He said his liver is a tiny bit firmer, but that is very subjective and he looks pretty good. He said we were right to call because at the this point, he is still at risk of it returning and we'd want to catch it early. His appetite is increasing so thank goodness for that. Hopefully we can just take it easy the next few days.
Hopefully it's Nothing
Last night, after his bath, Connie threw up. He also had a very hard time falling asleep and seemed like his breathing was more labored when laying down flat. This morning, he got up a little before 7 and is now already napping again!
Please pray that all these signs can be explained by the fact that he drank a ton last night compared to what he's been taking in lately so maybe he just overfilled his tummy a bit and that he's just catching up on sleep he missed while in the hospital.
I'm going to call Dr. Bromberg just to make sure. . .
Please pray that all these signs can be explained by the fact that he drank a ton last night compared to what he's been taking in lately so maybe he just overfilled his tummy a bit and that he's just catching up on sleep he missed while in the hospital.
I'm going to call Dr. Bromberg just to make sure. . .
Monday, June 22, 2009
We're Home
and hope to stay that way! We got out of there just before 11am today and he slept the whole way home. Once home, he drank a whole cup of milk, ate a whole slice of bologna and some cheese and pb crackers. Then he had some yogurt and a corndog! He took a little more nap while I ran errands and then the whole family went to Incredible Pizza to celebrate. There he drank a whole cup plus some of powerade! He's definitely not dehydrated now! He was fond of watching the big screen while he ate dinner. He is starting to like Thomas the Tank Engine. The whole time he was in the hospital, the Sprout channel was on and several times a day they show little Thomas episodes. Every time one comes on he says, "haaaiiin" (train). He was a little scared of the ride on toys (bucking horse, cars, carousel, etc.) at first, but did the bucking horsey and had fun. Now he's splashing in the little pool out back and asking to swing. It's so good to be home! We go Friday to Quest to do labs and going to see Dr. Bromberg next Monday to do an EKG and have him look at the pacemaker. We also have appointments standing with him for July 6th and July 16th, but they said not to cancel them just yet. He may want him back in on one or both of those dates too.
The Wheels are in Motion
Pacemaker Interrogation. . .check.
EKG. . .check.
Labs for INR level. . .check.
Talked to MD's about maintenance Amiodarone dosing. . .check.
Waiting. . .waiting. . .waiting. . .for a signature.
They say they are coordinating a follow-up visit with Dr. Bromberg, probably for a couple of weeks from now, and future labs, probably on Wednesday and then again next week.
Connie's off the monitor now and free to roam and go see the fish and go outside, etc. However, I'm afraid to leave the room for fear we'll miss the "green light" to get out of here!
I've got a bunch more pictures to put up, but I've already packed away the camera and will do it after we get settled at home.
Thanks again for all your prayers.
p.s. Our roommate (the Vianney bound one) ended up being moved back to the CICU yesterday afternoon because of the irregular heart beat and high heart rates. They are administering an IV medicine hoping to control it. If that works, then they will have to monitor him for 24 more hours and then make sure he tolerates switching to an oral med. He's here at least till Tuesday, which is lowering his spirits a bit since he was set to be released Sunday. Please keep him and his family in your prayers.
EKG. . .check.
Labs for INR level. . .check.
Talked to MD's about maintenance Amiodarone dosing. . .check.
Waiting. . .waiting. . .waiting. . .for a signature.
They say they are coordinating a follow-up visit with Dr. Bromberg, probably for a couple of weeks from now, and future labs, probably on Wednesday and then again next week.
Connie's off the monitor now and free to roam and go see the fish and go outside, etc. However, I'm afraid to leave the room for fear we'll miss the "green light" to get out of here!
I've got a bunch more pictures to put up, but I've already packed away the camera and will do it after we get settled at home.
Thanks again for all your prayers.
p.s. Our roommate (the Vianney bound one) ended up being moved back to the CICU yesterday afternoon because of the irregular heart beat and high heart rates. They are administering an IV medicine hoping to control it. If that works, then they will have to monitor him for 24 more hours and then make sure he tolerates switching to an oral med. He's here at least till Tuesday, which is lowering his spirits a bit since he was set to be released Sunday. Please keep him and his family in your prayers.
Sunday, June 21, 2009
Good News!
What a long night! Connie slept great. Went to bed at 9:15 and got up a little after 6. He only woke once or twice for a brief period. There was a little more activity in our room last night because his roommate is having some issues with irregular heart beat. Hopefully it is nothing.
Today, his nurse said she is kind of set up to have a pretty easy day so if things stay that way, she will hook him to a portable big monitor which will read off the floor and take him up to the playroom and/or garden on the 8th floor! How awesome would that be?!
Today, his nurse said she is kind of set up to have a pretty easy day so if things stay that way, she will hook him to a portable big monitor which will read off the floor and take him up to the playroom and/or garden on the 8th floor! How awesome would that be?!
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