More Fun Pics!

One of his new goofy looks

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.

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).

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.

Promised Pics

Proof of God's promise. . .

BunnyGirl in heaven. . .

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!

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!

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!

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.

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. . .

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.

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?!

Just Another Day

Enjoying some time with no leads/monitors right after bath

Happy Father's Day Daddy!

I can examine myself, thank you very much!

"Can I listen to you?"

Bath Time

of no surprises. Daddy played with Connie this afternoon while I took the girls out for a bit. We swam and shopped for Father's Day goodies. When we got back, we ordered IMO's and ate altogether as a family for the first time in what seems like forever. We went out to the parent lounge on this floor. Of course, Connie only ate saltines, but it was nice nonetheless. We gave the leftovers (and there was a lot b/c Greg always orders too much) to the nurses and docs. They were VERY appreciative and were seen sneaking pieces the rest of the evening. He had a special visit today from his physical therapist, Ms. Deb and her daughter, Allison. Allison also babysits the kids. Allison and her friends have started their own charity called Friends of Hope (I think that's the name) and they used their own money to buy toys for sick kids. Connie and the girls were the first ever recipients of their generosity! Thanks ladies!! What an example of Christian service. I hope our girls are just as thoughtful and giving someday. After some more running in the halls, Connie got a bath and books and prayers and bed. He should only get messed with at 12am and 4am so that is good.

Party Animal

Connie was a wild man last night and even found himself in trouble a couple of times. He came very close to falling out of the bed twice, even with all four rails up! I think it was past 11:00 before he finally went to sleep. He woke up about two times and it is now seven and he's snoozing soundly. It's so nice to have an older roommate. The teenage boy will be attending Vianney in the fall so he and Greg chatted a bit about that last night. They went down on the coumadin to 1mg b/c his INR level went up again (he seems pretty sensitive to that stuff) and his thyroid was slightly elevated. Don't know if that's already an effect of the amio or if that is his baseline. I'll ask today if I see somebody.

Have a great day. I think the plan is for Greg to play with ConBon today while I take the girls swimming for a bit and out to look for Father's Day goodies. It's amazing how holidays and real life can slip by you when you are in here!

Mid Day (Friday)

Eating Doritos-yum!

Cheesy lips

Watching "Melmo" (Elmo) while he eats doritos

Watching TV and playing with Daddy's iPod--he's got it so rough!

Doing his favorite thing in the hospital, pushing buttons on the bed!

We are still here (surprise! not!). Connie's roommate got sent home just in time for him to take an afternoon nap. Poor thing was inconsolable all morning. Her mommy tried everything, but to no avail. To make matters worse, he wasn't allowed to venture outside of the room b/c the portable telemetry devices weren't working properly! He didn't seem too bothered by her crying, but was definitely at the peak of boredom. We asked the nurse to have Child Life bring us something new to do and we got infant toys that you press a button and a thing pops up. I was hoping more like a truck he could push around, but oh well. He did name the animals that popped up and even tried to feed the frog some of his raisins at lunch. That was pretty cute. He didn't eat much breakfast or lunch, but he did have one good diaper and drank 3/4 of a sippy cup full of diet soda (I'm desparate at this point!). His IV was not flushing so we got that pulled too. Now he's just on the monitor. They are watching his intake closely though so if he doesn't start drinking a bit more, he may get a new IV tomorrow so they can deliver some fluids. We kept harping about getting out for a walk so after lunch we finally got to tour around on 7. I'd say the highlight of his day has been pushing the automatic door button on the wall. He goes right up to it and bounces around like he can't contain his excitement. It's hilarious. We took some hot wheels out in the hall and pushed them back and forth for a bit and then he got a 12 lead EKG. They said they'll be doing it daily while he's on an amiodarone load but this is the first day for it. They drew blood late this morning for his INR level and to get a baseline on his thyroid. This is so they will have something to compare it to in a couple of months when they check it again to monitor whether or not the amio is negatively impacting it.

I look for him to sleep until 4 (cross your fingers!) and then maybe we'll walk around some more before dinner. Greg is bringing the girls up around 6:30 so that will be fun for him.

GOOD Morning!

Connie and his roommate slept all night!! The nurse came in one time to do something with the little girl and she fussed for a bit but her mom got her calmed back down quickly. His monitors were a little annoying, even though he wasn't moving. The nurse came in a couple of times to do stuff with those and he woke up once and got a little panicky. I talked to him and after she left crawled in bed with him till he fell back asleep--which he did!! He got up at 7 and is now eating some dry Honey Nut Cheerios and, you guessed it, Saltines, while he waits for his "breakfast" to come up to the room. Looking forward to a great day. These days where there's not a lot of change and no procedures or anything seem to drag on forever.

Nitey Nite

He's asleep and I'm following soon. He did get a roommate around 6:00. I think she may be leaving tomorrow though. He's been a bundle of energy all evening and playing around. He took another big walk with Daddy around the floor while I took Mookie to Applebee's down the street. It was nice to get outside, even if it was muggy and hot! No real health report. They don't do "formal" rounds on this side and his plan is pretty much just to stay and play until Monday anyway so they just discuss him as a group at shift changes or whatever. After Applebee's Mary Kathleen and I went up to the garden on the roof of the 8th floor. It's a shame that his portable telemetry device won't work from up there. There's a huge playroom and all kinds of stuff to do on the 8th floor. He seems tired of the toys and books from home. Maybe I'll see if Child Life Services will let him borrow some stuff from up there tomorrow.

Rough Move

Connie finally fell asleep around lunch time and was awakened an hour or so later to be moved. He was not a happy camper. We tried everything we could think of and even a walk in the alligator wagon didn't calm him down. His late lunch came and he ate 1/2 of a dinner roll and some milk and juice and doritos (couldn't get anything else into him) and was much happier. He got on a portable monitor and was able to go around on the floor in our stroller and also walking (more like running!). He showed off and played pushing the automatic door buttons.

When we got back, he'd been moved again. All our stuff was down the hall and in a room where he is now the only patient!! Yay. That means Mommy has a window seat and he even has a little area to play and move around. Hopefully we'll get to keep this set up until Monday when we should be getting out of here.

They are talking like not interrogating the pacer until right before discharge. This baffles me and I still don't comprehend how his rate can be fixed at 100 when he's up and mad and screaming/crying. To me that means he's in flutter and mode switched, but I'm no doctor.

So, despite our somewhat stressful couple of hours, things are looking great. Just the fact that he had the energy to walk around for an hour is great! I wish they had a playroom or child life on this floor. He's confined to the 7th floor but there's not much to do other than walk the halls. This is tricky with him b/c he likes to go near doors he's not supposed to and he likes to bang on the metal cabinets in the halls near the doors of patients who are on contact precautions! I have to try to corral him in certain directions while holding his telemetry monitor!! It's kind of challenging to say the least. It's better than sitting in bed though, that's for sure.

Greg and MK are coming up soon and then tomorrow Cece will get to visit. I'm sure that will be a nice distraction for him.

Still Awake and Today's Plan

He never did drift back off. He's going to be one sleepy or crabby boy today!

Docs just finished rounding here and they are confident that his intervals looked good overnight and that the 100 was just being paced and not flutter. I really want them to interrogate it again, which is very simple to do. They said they can look at it again before he's moved to the floor. The milrinone is getting turned off for the second time soon so as soon as that's done, we wait six hours to see how he is and then if he's fine and there's space out there, we move to the floor. His INR level this morning is 2.64 which is right where we want it, somewhere in the 2-3 range. His coumadin and dig were both cut in half last night for his evening dose and are going to stay that way for now. Apparently there is some issue with drug interactions at the doses he was at previously.

Not much sleep (Weds nite/Thurs morn)

Connie did go back to sleep for about 1.5-2 hours last night but then has been awake and squirmy ever since. Altogether he's had about 4 hours I'm guessing. He even had some 4am crackers and juice (no dinner last night) and wanted more but I want him to eat something at breakfast so I told him to lay back down. He's being very good and cooperative other than pulling on his little IV house (cover) and taking his sat monitor off a few times. He's been wetting diapers and the doctor came in around 5am and assessed him and says he looks good and his liver is barely noticeable. The plan was for him to go to the floor around 10 or so if he tolerated coming off the milrinone that they turned off at 4am (have to watch him for 6 hours before sending him out) but after the night he's had with the questionable heart rates, they turned it back on at 5:15 until such time as they interrogate the pacemaker to find out what was the cause of those times where he's stuck at 100 bpm.

I'm trying to get him to go back to sleep now but it's almost a lost cause since they'll be up to take blood sometime around 6am.

Unsure

Connie has been squirmy the last couple of hours and I finally got up to see and his monitored HR is stuck at 100 again. It could just be that his heart is healing and he naturally is wanting to drop down some but since his low rate is set at 100 it is just pacing him, OR, he is in flutter again. The nurses and docs noticed it before me and have been analyzing all the p waves and qrs waves throughout, insisting that this looks different than his waves looked when they "knew" he was in flutter when he came in. My only concern, and reason not to take this answer as gospel is, that the only way the flutter has been detected reliably thus far is by interrogating the pacemaker. It hasn't shown up on phone transmissions, it hasn't shown up on monitors and it hasn't shown up on an EKG even. So, before we move out to any floor I've requested that they interrogate him again in the morning or whenever to see what these periods of 100 look like in the devices history. We shall see. I think it's funny that he was squirmy and awake, even before she came in to do vitals. It makes me wonder if he feels funny and with a racing heart he can't sleep.

Now that I got up and talked to them and went to the bathroom, he's taken over the center of the bed! I guess I'm resting in the chair the remainder of the night. . .

Evening Rounds and Report (Weds)

Docs came around this evening. Connie had 16 saltine crackers (even one doc said, "In a row?"), 1/2 choc. chip cookie and 8 oz. of OJ for lunch. He ate zero dinner though. I even got him soup, grilled cheese, french fries, grapes and chocolate milk and he'd have none of it. I'm not going to stress. Maybe he's just not ready.

We did have one alarming episode this afternoon. He was napping and his rate was at 100. It stayed there, but we thought it was that he was too low on his onw so he was being paced. Well, moments later he woke up and cried and moved around and got active and it stayed stuck at 100. I motioned to the nurse who came in and said she had been watching it too and was concerned that the flutter was back. She and two cardiologists looked at it on the "big board" and thought that it looked like he was in normal sinus rhythm except for the fact that it wasn't changing with increased activity. That was weird, but it only lasted for 10 minutes or so. He's been 104-114 ever since. The plan is to keep an eye on that overnight and if nothing else happens, stop the milrinone tomorrow and move him to the floor for the rest of our stay. That's the part where we have a tiny room and will have to share it.

Pacemaker

The Medtronic Mad Scientists (engineers and field reps) have been working feverishly with the MD's today to understand what is going on, what happened, and what needs to be done regarding the pacemaker. At about 3pm, the pacemaker nurse and the field rep came in to adjust settings. I still am completely lost when it comes to understanding this portion of Connie's heart disease. Now the flutter will show up on a CareLink monitor transmission if the docs look for an atrial ECGM or EGM or something like that. It won't be missed again. His lower rate is now set at 100 and might come down before we leave the hospital. They tried him as low as 60 and his own rate never did kick on to override that. That means if his pacer malfunctioned or something and he wasn't being paced he would feel pretty miserable. As soon as she turned it down he started fussing. The other thing we should look for is the artery in his neck. If it is going fast or is very noticeable, we should send a transmission. The heartbreaking news is that he's been in flutter on and off for over 15 days. On the atrial arrhythmia report by month, there were a few brief episodes in April and then May is just covered in abnormality. I just wish he could tell us his heart feels funny. Poor baby. Hopefully the amio will do it's job and we can prevent future episodes. Dr. VanHare reiterated today the need for a catheter ablation, but that it would not be recommended until he is much bigger (like 7 or 8 years old). So, for now we hope that the amio is well tolerated and works! We'll leave it up to God since it's even pretty tricky for the smart people at Medtronic to nail down :)