It's Good to Be Alive...

... It's the title of a Jason Gray song that Connie likes to sing. It's also quite fitting to describe just some of the memories captured on film for him this week at Camp Rhythm. He made new friends. He learned he's not alone. He sweated in 105 degree heat. He swam like a fish. He went fishing. He got to eat dessert first. He got to get dirty. He got to be a regular little boy. Enjoy the video below.

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Camp

The time has come. Connie is finally old enough to attend Camp Rhythm, a camp for kids who have had open heart surgery. From ages 5-8 children can attend day camp or "mini camp", after that it is an overnight camp located 40 minutes from our house. We are so blessed that he is able to attend after all. It is kind of one of those silver linings of the surgery being postponed. Less than 12 hours from now he will be making friends with 19 other little kids who have been through similar struggles and share the same strength and courageous attitude we see in him. I have witnessed adolescents who have attended this camp for years and seen the bonds that tie and lifelong friendships they form and I am excited for Conway to have that same opportunity. He already knows a few heart friends, some of which will be attending too. There are other heart kiddos we follow online, and over the past six months he has really become interested in them as well, probably because these kiddos have had a lot going on health-wise recently and we've prayed for them often. He is especially fond of Keian and Tim. He is really bummed that these boys live far away and won't be at camp. I'm crossing my fingers that one day we will have a reunion for all the L-TGA families we've grown to love these past five years and these kids and parents can meet. We've cried, celebrated and prayed for these kids during the ups and downs of this disease. Tomorrow, our heart family will grow just a little bigger as we meet new families and children on this journey. Conway is packed and ready to go. He says he's a little excited and a little nervous. I bet after the first ten minutes the nerves go away! By the way, he is all better, finally! Thank you for praying.

Wheels in Motion

After our day of disappointment, travel and recuperation we are ready to get the ball rolling on plans to get back to Ann Arbor next month. Greg's contact at our hotel said that unfortunately, the UAW is hosting their national convention in A2 that week and getting a room anywhere in town will be next to impossible. They can not offer us the same amount of nights we had remaining, but they did have a late cancellation for four nights, so we know we've got a place to stay through the night of August 10th. We will hope that by that time he is well enough to be floor status, at which time we can both be with him overnight. We may try to get a room at the Med Inn for the 11th through discharge, but I honestly don't know if I can handle stepping foot in there. It just holds so many traumatic memories. We had purchased tickets for Connie and I to fly home in time for heart camp next week, but since things have changed, and since he's growing rather weary of another long car trip, we decided to see if we could change our flights to August 7th and have Greg meet us at the airport in Detroit and drive us to A2. I think it will help his spirits some and keep him out of rest stop bathrooms and hopefully well enough to go through with the surgery next time. Thankfully, it only cost $26 total to make the switch. We got lucky there. On the health front, he hasn't vomited anymore since yesterday evening, but he did have two accidents overnight. He's such a big boy, he even got himself changed and cleaned up. Thank you for your continued prayers. We know that the peace we feel is a direct result of so many lifting us up.

We're home!

We rolled into the driveway just after 7:00 to be reunited with the other kiddos. Karsten was so cute. He did really well while we were gone... like it didn't even phase him. He said hello to his brother and then went on about his business. Connie's loose stools improved drastically and he kept everything down most of the way home. Just this side of Springfield he vomited again. I think he started taking in more than a small sip and that triggered it. All the pedialyte and crackers came up. I was a little concerned we might end up needing to get him on some IV fluids, but he's urinated a few times and his eyes aren't sunken in. We'll.call the ped in the morning if he struggles again after breakfast. Looks like heart camp is going to be a reality now and he'll have more time for summer. I also like that the new date is on a Wednesday. I wasn't too crazy about major surgery just before the weekend when staffing seems pared down a bit.

August 8th

That's the new date. We do have the benefit of it falling within the 30 day window so as long as Kim can wrestle his blood work papers away from the people in the PACU, we can forgo more pre-op testing next month and just show up on surgery day. Pray for health! We are heading home today, even though we have all three started having GI issues. He wants to go home, so to home we go!

Already seeing the blessing

Never thought I'd be thrilled that my child is sick, but I am thrilled that he is sick in the hotel rather than sick trying to recover from major open heart surgery. He is continuing to dry heave/vomit and just had a bout of diarrhea even! Dr. Bove must have a sixth sense! What a blessing that he felt uneasy in moving forward! We returned to the hotel to discover a gift had been left for him at the front desk. It was a present from Con-way Freight across the street. Here he is opening it.

Surgery cancelled

Conway threw up again before bed and the apple juice from very early morning. We were told to bring him in and they'd reassess. We got there and told the nurse who didn't seem overly concerned and said it would be anesthesia's call. The fellow and another doctor came in and heard all about it and didn't see any reson not to proceed. He has no temp, sign of infection or any other systemic issue. His labs from yesterday were normal and show no elevated counts or problems with electrolytes. They paged Dr. Bove to fill him in and he feels it is unsafe to proceed at this time. Greg is ecstatic and relieved. I can't help but be disappointed. Of course I don't want him to go through a risky "elective" surgery if he is compromised in any way, and in my head I know that this is a blessing in disguise and today just wasn't the right day for this. But my heart is sure heavy, knowing we'll have to do this all over again, only now it being more likely that he'll have to start kindergarten late and all that goes along with the travel details, etc. I have a new job this school year, too, and am pretty nervous at the prospect of needing time off before I start! I know his safety is number one, but these are real concerns that I can't help but worry about. He was so disappointed he wasn't getting his heart fixed today, and Dr. Bradley even came by to visit, not knowing it was off. We joked that this was the second time Connie's invited him to the dance and stood him up. The last time was in the cath lab in '09 when he attempted an ablation for the first time. Now we wait to hear from his schedulers, but they advised us to go back to St. Louis. We were told we'd know more by 11am about when he can be put on Dr. Bove's schedule. He was very sorry. I feel bad for him, but sure respect him for making such a difficult decision.

Monkey Wrenches

Left the hospital at quarter to five and Connie took a very long nap. Just after he woke up and got dressed to go to the pool, the phone rang and it was the cardiologist we saw today. She said plans have changed and after further review of today's echo, they want to replace a valve as well. They are looking to use a donor cadaver valve in place of his native pulmonary valve, along with the new conduit. This is a disappointing development, as it means he will now need valve replacements in the future. The average valve lasts 10-15 years, but that's what conduits are supposed to last as well and here we are just five years later. Oh, and he threw up again tonight after another headache. He doesn't have a fever and says it was a migraine. Hospital seems okay with the news. After welling up for just a moment while I was on the phone with the doctor, I have given it to God and trust that He knew about this even before Connie was conceived. Also, Dr. Bromberg reminded me that we are one of the best places in the world and if their collective, brilliant minds think this is what is best for our boy, then so be it. Please keep praying. We are at peace.

Pre-Op Testing Day

We opted to eat breakfast in the little Subway cafeteria in the hospital prior to the start of our appointments today. Right away he went down for x-ray and did a marvelous job. He was an old pro! Then back up to the coordinated care section of the heart center. There he got a visit from Rachel, a child life specialist. She talked to him and gave him a few cool toys he could play with while waiting for his tests today. He even got to keep the toys! He told her how much he likes bowling and that he went to Bel-Mark Lanes yesterday.

Soon after, Terri, a nurse, came to take him back to weigh him and see how tall he is. He was 40.6 lbs and 43 inches! We quickly went down to the EKG lab where Brynn, a nurse practitioner ran some more tests on his pacer. She and Dr. Bradley were in communication all day while Dr. Bradley was in Toledo at a satellite clinic. She said that the plan is still undecided about whether or not they will place a bi-ventricular pacemaker, but they will definitely place an additional lead during surgery on the left ventricle and change out the pacemaker generator. We went back to the clinic for an exam by a 4th year med student and an echo. Brent was the echo tech who had the hardest job of the day. They wanted to do what is called a synchrony study which is a very lengthy process. We didn't finish with that until 12:30. Connie was a very good boy throughout the whole thing, watching Toy Story 2 and listening to us read him books. After the echo, the cardiologist on service, Dr. Goldberg, came in with her fellow to do another exam, talk about the procedure and go over his history. She then walked us over to Dr. Bove's office, which is about a seven minute walk, away. During the long walk she got to hear all about his rough go the first time around and his miraculous recovery. She said he has quite a story. By this time it was about 2pm and Connie was getting a little hungry. Kim, Dr. Bove's secretary, was so wonderful she offered him a Sprite and some pretzels. He guzzled down the soda, a rare treat. During our consult with Dr. Bove, he belched twice! Silly boy! We had a nice conversation with the doctor and he told us that he expects this to go much like it did three years ago, about the same amount of time on bypass (90 min) and similar recovery time. He said he thinks he can use an adult sized conduit on him now, which could mean that this would be the last replacement he'd need as long as his native pulmonary valve holds up. I asked him about the tricuspid leakage which seemed concerning to the cardiologists here but he feels confident that resolving the pulmonary obstruction will take a considerable amount of pressure off of that valve and improve its function. I asked whether or not he felt an ICD was appropriate and he said that so long as he is not experiencing arrhythmias, he is not at risk of sudden arrest and it is not warranted now. Greg wondered about the likelihood of eventual transplant and while he has no crystal ball since this method of dealing with L-TGA is so new (the double switch having only really been done for about 10-15 years now), he knows one thing for sure. Had we not done the double switch, he would have a 100% need for a transplant. So it is not out of the question down the road, but it is not the certainty it would be had we just had surgery to close the VSD and replace the tricuspid valve when he was a baby. He said he and Dr. Bradley still hadn't decided about the bi-v pacer or even whether or not he would place a lead. He also is unsure as to whether or not he'll stop Connie's heart tomorrow. He can't say until he gets in there. Sometimes it can be done more quickly with it stopped, which cuts down on bypass time... which is important. He thinks there is a good chance he will go ahead and stop it briefly. He said it is actually probably safer for him to do so. Then came the part where we sign the consent form. He didn't want to say most of it out loud since Connie was sitting right there, but there is a 5% mortality risk with this surgery. Afterward Greg said he had been feeling pretty good about it up until that was said. 5% sounds pretty high considering the double switch was only 10% and is so much more involved. Next we grabbed a quick bite to eat before going back to the heart center for a brief tour of the inpatient unit and playroom. Much to his dismay, they don't have a bowling set in the playroom, but do have a Wii. Hopefully that will be enough motivation for him to get up and around to aid with chest tube drainage and recovery time. He slept through the meeting with the anesthesia nurse and woke up just in time for a needle poke. They drew a few tubes of blood and we were out of there by 4:45. We're back at the hotel now and he and Greg are sound asleep. He wants to swim later and I'm all for letting him do whatever he wants (within reason, of course). The nurse said it will probably be 3-4 weeks post op before he'll be allowed back in a pool. Thank you for the prayers and well wishes. I can't tell you how comforting it is. We've even gotten messages of support from Conways' cardiology office in St. Louis and from the camp staff at St. Louis Children's! Such a blessing to be a part of this heart family. was about 2pm and

Free Day

Today we had the whole day to do fun things around town to try and take our minds off of what is to come. The plan was to go to the beach/splashground in the morning and bowling in the afternoon. We slept in (we needed it!) and didn't get going until close to lunch time! He was dying to bowl so we went to Bel-Mark lanes first. He bowled three games and had a grilled cheese sandwich and milk. Then we went back to the hotel to grab our suits and head to Independence Lake. We got there, but on the way he said he had a terrible headache and was almost crying. He said it felt like a migraine. Sure enough, he threw up. We turned around and went back to the hotel and he threw up again before taking a very long nap. At dinner time, he woke up and decided to rally! We went to the Cottage Inn for dinner where Greg had what he said was the best pizza he's ever eaten. We walked next door for gelato. Connie loved the lemon blueberry flavor. We decided it was just like in the book Olivia Goes to Venice. A few blocks away was Pinball Pete's. Talk about a fun arcade! Connie got his fill of skee ball, air hockey and pinball.

Tomorrow is going to be a long, trying day for Conway. Patience is not his best attribute and there will be a lot of sitting around and waiting for various tests and appointments. Please pray that he is cheerful and loving to all the new people he meets.

We Have Arrived!

We made the trip up to Ann Arbor in about 8 hours today. Only two stops and no traffic. Thank you for all the prayers for safe travel. We did happen upon two accidents that we narrowly missed. One was a large object that went through someone's windshield, and another was an overturned semi on an off ramp moments after we exited. Here he is posing in front of the Con-way Freight headquarters located across the highway from our hotel. How cool to have a building named after you!

We're watching the All Star game now. Or rather, I'm watching the game now. Connie's been bowling in the hotel room and reading his Curious George Goes Bowling book. Tomorrow we plan to go to a nearby lake that has a beach, swimming area, splash ground and boat rentals in the morning and then bowling in the afternoon. If there's time, we're going to hit Pinball Pete's arcade for some skee ball. Thursday morning we report to U of M Congenital Heart Center promptly at 9am and have been told to expect to stay until 5pm. Connie will have numerous tests done including EKG, X-ray, echo, clinical exam with both a cardiology fellow and Dr. Ensing (cardiologist), pacemaker check, labs; and appointments with Drs. Bove and Bradley, and a member of the anesthesia team. When the nurse from the heart center called yesterday, she said that if all goes well, Connie should be inpatient for about a week. She said conduit changes usually spend five days, and the pacemaker will probably add two more days. Your continued prayers are so appreciated! We find strength in knowing God has a plan for our dear boy and while we have an amazing team caring for him, God is in control.

Getting Ready

We are now six days out from surgery and just three days from leaving town to head up to Michigan. We have been busy preparing for this trip and are pretty well ready to go. Here's what we've been up to: He knows why we are going to Michigan. He knows he's having heart surgery. We didn't go into a lot of detail, but basically have answered any and every question he's had about it. He wants to talk about it every day, seems to be looking forward to the trip and tells friends, family and neighbors the date and what he's having done, etc. He is most concerned that we will leave him. I have reassured him over and over that the only time we can't be with him is when he's in the O.R. and that's because the doctors and nurses are the only ones that need to be in there in order to keep it clean and safe. I told him Dr. Bove will be in there with him when we can't be, and that he'll be asleep the whole time. He is also worried his surgery is going to hurt. I explained that he'll be asleep for the whole surgery and won't feel anything, and that when he wakes up, if something is sore he can let us know and we can give him medicine to help with the pain. He has been saying he just doesn't understand how they get the heart open and he wonders what it will look like when it is open. I have hesitated to use the word cut because I don't want to scare him. I happened to see a hospital in Florida that recently did a live feed of a little girl's heart surgery and posted updates and pictures on their blog. I asked him if he wanted to see what a heart looked like during surgery and he said yes. I showed him the blog and he wasn't bothered by it, but also didn't want to look at it for very long. His other big concern seems to be "tubes". I think by this he means IV's and the ventilator. I don't even think he knows about or remembers chest tubes, which I've been told are the most painful part of recovery. We are praying that by the time the sedatives are lifted, he will already be extubated and we won't have to worry about him fighting the vent. He has been awfully cute with some things he's said lately. He was pretty restless in church last Sunday and Greg was kind of trapping him between his leg and the pew in front of us. Connie loudly proclaimed, "Dad, Stop! You're hurting my pacemaker." Of course that got some looks of pity from those around us and made Greg feel terrible. When we met with Dr. Bove at the reunion he heard him say that once we got that new conduit in there that he'd be hard to keep up with. Now every time he's moving slowly (getting in and out of the car in 105 degree heat, taking forever to get dressed, etc.) he says, "Mom, I'm just slow because my tube is too small and I need a new one. Once I get a new tube I'll be faster." His new favorite game in the pool is "Dunk the Doctor" and he and MK take turns sitting on the steps of the ladder waiting to fall in while the other throws balls at the side of the pool, trying to hit the target. They pretend they are Dr. Bove, Dr. Bradley, Dr. Bromberg and Nurse Colleen. It is pretty hilarious to watch! We wanted him to receive the sacrament of Anointing of the Sick before we left and we had some religious articles that will accompany him into the operating room that we wanted to have blessed. He'll be taking a rosary with Lourdes water inside, a guardian angel prayer card, and two medals. One is of the Sacred Heart of Jesus and one is of the patron saint of heart patients, St. John of God. We visited with Msgr. Callahan, who was the priest at SEAS when I was a young girl. It was partly due to his welcoming spirit that I decided to convert to Catholicism. We chatted for a bit and he got to know Connie and Mary Kathleen. He's been following Connie's story from the beginning and said countless prayers, I'm sure. Connie said he was scared the Anointing was going to hurt, but Msgr. reassured him. He's had it done about twice a year during mass at Assumption, but he was a little nervous this time. Msgr. prayed over him and Anointed him and then we left. We've also been trying to help MK deal with everything as well. She's a very anxious child to begin with so having a brother with a chronic illness has not been easy on her. And in order to help him find a little joy during his upcoming stay, he's been able to pick out some new toys and books to take to play with/read in the hospital. I'm sure that this, along with all the attention he's received from friends and family has made her start to feel a little left out and jealous. She's not typically like that, but she asked when we were leaving the rectory why she never gets Anointed and I think just the fact that Mom and Dad are going to be away from her for a time is a little unsettling for a seven year old. Karsten is, of course, too young to understand or anticipate what any of this means for him. I'm praying that regular FaceTime visits will be enough for him while we are gone. He adores Grandpa especially, so I'm hoping that the fact that Grandpa will be with him and he's going to have his same routines and be in his own house will help. It's Saturday afternoon and we're just about packed. We just have a few odds and ends to gather before we leave on Tuesday morning. We have opted to quarantine Conway until we leave, in hopes we can avoid any illness that would require postponing surgery. It's going to be a long few days at home! Please pray that he remains healthy and that his fears are relieved. We are asking that God give us what we need each day, and that Conway's story will give others hope and increase their faith. One thing Conway is requesting is to FaceTime people while he's in the hospital. Traveling for surgery is hard on everyone. Staying in town definitely has it's advantages as far as convenience, cost and support systems, but we feel that due to his complexity and history, U of M is the best place for him to receive care at this time. He has experience using Apple's FaceTime with grandparents and cousins and would like to use that tool while he's in the hospital as well. We think it would be a good distraction for him and help pass the time. If you have an iPhone/iPod/iPad and would be interested in talking to him, you can leave your contact info in the comment section or email it to me at becketeach@gmail.com.

We Got the Beat! A reunion for U of M patients with complex CHD's

We made an impromptu visit to Ann Arbor, MI this weekend. Don't worry! Conway is fine. We went for a reunion for University of Michigan Congenital Heart patients. I read about it online Thursday evening and Friday morning while the kids were at VBS, I coordinated with our contact at the Holiday Inn for a room and asked another parent to take over coaching duties for MK's softball game that night (Thanks, Pohlman's!). Right after I picked the kids up from VBS we loaded up for the 9 hour drive. Greg had work to do so I took them by myself. I'm sure if I'd had more time to plan, I would have talked myself out of it, but I was excited and running on adrenaline, I guess! Needless to say, we had a couple of traffic snafus on the way up, so the drive ended up being about 10 hours, but the kids were great the whole weekend and had so much fun. My thinking behind going was that it would be good for Connie to form some relationships with the doctors and staff in a non-threatening environment so that when we go next month for surgery he feels more comfortable. Also, I thought it wouldn't hurt for them to get to know him a little better when he's not sedated... to see him as a real little boy and to see a glimpse of his personality, hoping it would strengthen their desire to do their absolute best for him. We were not disappointed! We saw God's hand in little things the entire day. The sun was shining, the temps were in the 80's, the facility was amazingly clean, Karsten was good despite missing his nap-even after being up until 11 the night before, and the list goes on. Here are some of the best pictures from the event. Connie riding a pony. Normally not noteworthy, but this child was terrified prior to this day of riding anything! Turned out to be his favorite activity! It took him a while to climb to the top of this slide (sorry to the kids in line behind him!), but look at the joy on their faces as they slid down. Bubbles the clown made every kid a balloon animal. Conway chose a dog, MK a bunny and Karsten a giraffe. Showing off his new shirt The man of the hour, Dr. Bove. I wish I could have captured the look on his face when he realized who was approaching him. We had been waiting in a line for about 30 minutes, they had professional photographers, etc. You could tell the doctor was looking at everyone's nametags and trying to figure out who people were. He's done 10,000 surgeries since he's been at U of M, so he likely doesn't remember every case. I knew he wouldn't recognize Connie because he was only 2 the last time he saw him. When he read Conway's nametag, you could see the awe in his eyes. I'm not making this up. He looked up at me and beamed with joy. He shook his head as he uttered, "He looks amazing!" He was referring to the fact that he took such a hit neurologically after the first surgery and it was obvious to him that he had overcome so very much. That one look from the doctor made all the time in the car and the fuss of packing all worth it. It was like a reassurance for both him and me that miracles really do still happen, and Connie is one of them. The man on the right is Dr. Bradley, the electrophysiologist who was able to successfully ablate Connie's atrial flutter in 2009. You have no idea the peace that came over me when this man actually knew the date of Connie's upcoming surgery. It's almost a month away and he's not even a regular patient in their clinic! As soon as he saw us he remarked about how amazed he was that we made the trip and that he looked forward to seeing us again on the 13th of July. What a professional!! The doctor on the left is one of his trainees. Connie told Dr. Bradley that he wanted to be a boxer. Dr. Bradley agreed with me that he should stick to boxing on the XBox Kinect and keep up with bowling instead! Dr. Bradley and his team will handle the programming and initial monitoring of the new bi-ventricular pacemaker that Connie will be getting in July. They printed the pictures of the kids with their doctors and gave them out, along with paper frames the kids could color and keep as souvenirs. Connie apparently thought a 3D frame was a better idea! Karsten snuggling his new Bear Bear. We brought him a U of M bear back from our trip in November and it quickly became his lovey that he sleeps with. We decided we ought to get a back up. Another favorite memory is the Dunk a Doctor game. Connie was especially looking forward to this event and when he heard them announce Dr. Bradley as the doctor in the tank, he took off running! This man is so wonderful! He spotted Connie at the back of the line and pointed him out to his nurses. They started calling Conway's name until he came forward. They kindly explained to everyone he just butted that this was Connie's doctor and they wanted him to have a chance to dunk his own doctor. He gave it his best shot! On the third throw, he nailed it! Down went the doctor and the crowd went wild! I love the look he gave Connie here! Survival Flight even made a stop to show the kids their helicopter And what better way is there to end a perfect day than with a sno cone?! All in all, it was a great little weekend road trip, with lots of fun and memories had by everyone. Hopefully these happy times will help Connie be brave when he's faced with the not-so-happy hospital time coming up. On the drive we listened to his new Vacation Bible School music CD and one song is all about God being with you wherever you go and how God helps you to be strong and brave. I reminded him that God even goes to Michigan, and will help him be strong and brave for his surgery. Conway's surgeon, Dr. Bove, has been honored with an Endowed Professorship in Cardiac Surgery. This site tells more about it and this brief video gives a little insight into just what amazing things he has done over the course of his career to better the lives of children affected by congenital heart disease.

The Date is Set

I couldn't stand the suspense of not knowing so I caved and called Michigan today. I was transferred to Kim, Dr. Bove's secretary. They are an hour ahead so it was already 5pm there and she had shut down her computer for the day and was walking out the door. They are so wonderful there that she turned everything back on and looked in Dr. Bove's notes and saw that he has offered us July 13th for Connie's next surgery. That means that pre-op would be on Thursday, July 12th and Connie would be first case (and likely only case) for Dr. Bove on Friday, July 13th. I'm not superstitious, but I'm also not fond of the fact that his surgery will be on a Friday, the 13th. The good news about this date is that hopefully he'll be fully recovered by the time school starts in late August. The bad news is that he won't be able to attend Camp Rhythm, the heart camp sponsored by St. Louis Children's Hospital. This was to be his first year to go to mini-camp (day camp). Our tentative plan is for Connie, Greg and I to drive up on Tuesday, July 10th and take a day to get settled and check out local bowling venues in the A2 area (We promised Connie we'd bowl in Michigan) before pre-op testing begins on Thursday. We will have a room at the Holiday Inn near the University of Michigan until we can get a room at the Ronald McDonald House next to the hospital. Between the grandparents, I think we've got the other kids covered. Please keep us in your prayers as we prepare for this next step of Connie's journey. Here's the boy sporting his Dr. Bromberg fan club shirt ("When I grow up I'm gonna be a cardiologist.") and showing off his survivor hat and zipper scar.

Dr. Bove Agrees

Well, Dr. Bromberg was at SLCH on Weds for conference and he picked up all of Connie's records from his cath and other labs. He forwarded them on to Michigan for Dr. Bove's review. On Thursday, he got a note from Dr. Bove that he agreed that it was time to replace the conduit. How's that for fast?! Soon, we should be hearing from someone in scheduling at Mott and then we'll go from there. Greg was able to find an Ann Arbor hotel that was willing to barter some of his goodie boxes for a room. They even have 24 hour shuttle service to the hospital and are only three miles away! What a blessing that we don't have to worry about that huge added expense.

Congenital Heart Night at Busch Stadium

Connie was able to get in two naps Saturday before game time so he was ready to go! Unfortunately, the weather was very warm and our seats were directly in the late-day sun. He spent a few innings out near the concession stand in the shade, but after that was happy to be in the seats and clapping and participating. We sat right next to several heart friends including Averi, Maggie and Abbie Lynn. Averi and Maggie will be attending Camp Rhythm with Connie this summer and Averi will also be having open heart surgery very soon to replace her homograft. I'm so grateful that we have met so many wonderful families on this journey and that he'll grow up knowing he's not the only one battling this disease.

The game was rather boring, as the Cards were shut out 4-0 by the Phillies. The highlight of the evening was definitely getting to talk to Dr. Bromberg, his cardiologist. He was seated a few sections away with some other members of his office staff. We joked about how the echo technicians all draw straws when Connie is in the office because his anatomy is so challenging to view and measure.

I just love this one. It shows so clearly what a connection Dr. Bromberg has with our boy. Some doctors just talk to the parents. He always asks Connie questions and has fun with him. It's no wonder why he's Connie's favorite and why Connie has named Mercy Hospital, "Dr. Bromberg's Hospital."

Our next step, according to Dr. Bromberg, is to call his office tomorrow (Tues.) to confirm the receipt of his cath information from Friday and that they forward it on to Michigan for Dr. Bove's review. Then we wait to hear. Please pray that his surgery date will be soon, so that he has time to heal enough to still go to heart camp and that by the time school starts back up he will have no restrictions. We take comfort in knowing that God's timing will be perfect, but as parents we sure think we know what's best and have a hard time letting go and letting God.

We're Home

Conway was discharged a little after 5:00pm. We're so happy he didn't have to stay overnight. He's extremely upset that he isn't going bowling tonight, which was his wish. He also won't be able to swim for a week, which is a bummer given that pools open this weekend and it's going to be 98 degrees tomorrow! We're hoping he feels up to going to the Cardinal game tomorrow evening for Congenital Heart Night at Busch Stadium. His cardiologist will be there, too! How's that for a follow-up appointment?!

Cath Finished

Dr. Balzer just spoke with us and shared the video from the cath. He is still in the lab waiting for the blood thinners to wear off before removing the catheter. Results from todays test reflect what we saw on echo last Monday, meaning so far everyone is in agreement that we are at the point where surgical intervention is necessary. Now we will wait to hear from team in Michigan on timing. After they get Connie settled in the room he'll have to lay flat for 4-6 hours. Hopefully we'll be discharged by dinner time. Thank you for all the prayers! They are working! He remained calm, excited even, right up until about 10 min before the procedure began. He was crying when they took him into the cath lab. They tell us he won't remember it. I hope they are right.

Cath Tomorrow

I got a call from SLCH today saying that next week's cath schedule looks crazy busy so they want him in tomorrow! We leave at 5:30 and he's Dr. Balzer's first case. We feel so blessed that we were able to get Dr. Balzer after all, and some of our anxiety is relieved knowing that the same doctor who has done his other caths in St. Louis will again be the one doing it. They told us to plan on being admitted Friday night, but we're hoping it will just be a diagnostic cath and that we'll be discharged by dinner time. We'll update tomorrow during/after the procedure. Goodness knows we'll have plenty of time while he has to lay flat for six hours afterward! Pray for him to remain calm. When I tried talking to him about this coming up he started getting all panicky about the mask again. He is deathly afraid of having tubes or anything near his mouth. I think subconsciously he remembers things from infancy and that period of time when his oral aversion was so bad.

Surgery Needed and AHA Heart Walk

Well, our gut instincts were right. We have been noticing changes in Conway lately related to how much he is sleeping so we had an appointment in the middle of April where Dr. Bromberg was leaning toward thinking this was indicative of his RV-PA (right ventricle to pulmonary artery) conduit needing to be replaced to a larger size, but wanted to give it another month to rule out the possibility of Connie just having a virus or something. We went back today for an echo and sure enough, his RV pressures have gone from 66% in late February to well over 80%. Anything over 75% means that the conduit is too stenotic, or narrowed. He's had this gortex conduit since he was 5 months old, so as his heart has grown, the conduit has stretched and become obstructed. We knew it would have to be changed at some point. Now we're just crossing our fingers that Dr. Bove (his surgeon in Michigan) will be able to use a large enough replacement that it will last Conway a very long time. The thought is also that while he is in surgery he will have an additional ventricular lead wire placed and have his pacemaker generator changed out to a new, upgraded model called a bi-ventricular pacemaker. That would give us more options in the future regarding the mode in which he is paced. When he was younger, he had to be changed to VVIR mode from the typical DDD mode because of his high atrial rates. Today he was switched back to DDD mode to see if that impacts his RV pressures, but we aren't holding our breath that doing that will have any positive effect. The good news is that his function is still good! Surgeons can fix obstruction, they can't fix function, or the squeeze of the heart muscle. The next step will be to have a diagnostic cardiac cath done here in St. Louis and send that info, along with his clinical reports and latest echo to Michigan for Dr. Bove's evaluation. If he agrees that surgery is necessary at this time, we will wait for his team to schedule it and have it done at C.S. Mott Children's Hospital at the University of Michigan, Ann Arbor, where his previous surgeries have been performed. We are hoping to have it done soon, so that he has the whole summer to recover and will be ready to start Primary (kindergarten) in August. We have given the okay to have the cath done by another doctor at Children's besides Dr. Balzer. The reason being is this is purely diagnostic in nature and no interventions will be attempted and we'd get in sooner. We may have to wait weeks to get an appointment scheduled with Dr. Balzer so it would be best just to move forward with the earliest possible date. The American Heart Association Heart Walk was held Saturday at Busch Stadium and Conway had a special treat this year. He got to walk with his heart buddy, Grant, the whole time. He and Grant have the same structural defects and have had a very similar surgical path. Both have pacemakers, both traveled for surgery as infants, etc. They are only 6 months apart and our hope is that they become life-long friends on this journey. They'll be able to confide in someone that understands what it is like to have heart problems. Here's a picture of the two of them comparing their medical alert ID bracelets.

And here they are posing for the camera

Connie and the girls also got their photo snapped with the SLU cheerleaders and the Billiken. Maybe he'll go there just like his Mommy, Daddy, Grandpa Beckemeier and Uncle Geoff!

We'll update again after we get a date for the cath. Thanks for keeping us in your prayers as we embark on this next step of Conway's heart journey.

Results

After a chest xray, exam and nice long chat with the good doctor, we have settled on taking another, closer look in a month. This sleeping more thing has only been going on for 1.5 weeks, so we want to wait a month and see if this is a sustained issue, or could possibly some random virus or have another cause besides the heart. This is probably the beginning of him becoming symptomatic due to the stenosis in the conduit. If he's still sleepier this time next month, Dr. Bromberg will do an echo and likely send him for a cath here in St. Louis and then send the info to Dr. Bove in Michigan for his opinion on timing of surgery to replace the conduit. He said things could go quickly so that hopefully he'd be fully recovered and able to start kindergarten with no restrictions.

Oral Surgery Follow-Up and School Update

Conway met with his oral surgeon today to make sure his mouth healed properly and to discuss the biopsy results from the mass that was removed. Thankfully, it was benign and his mouth looks great! Both boys came and were very well behaved so we made a trip to the cafe for jalapeno chips and gatorade.

On the school front, things didn't go as we'd hoped at the kindergarten screening back in February so he's been invited back for a rescreening mid-April. We are confident that wherever this boy ends up for kindergarten (if he even goes to Kdg) will be exactly where the Lord wants him to be and that God has great things in store for him. We are praying for God to show us His will and trust that while it may not be our will, it will be what is best for our son.

Thank you for your continued prayers. We are so blessed to have you in our lives!

p.s. Conway can now pump himself on the swing!

Labs

Not really updating this time to fill everyone in, but more for our own records. Connie had labs drawn yesterday and his BMP was normal and pro BNP elevated at 677 (100 is upper limits of normal). While this may seem high, his trend continues to go down so we are taking this as a good sign. His levels have decreased 10 fold since his mitral repair in 2009.

Back to Normal

Connie stayed home yesterday and was pretty close to normal. He ended up getting one dose of ibuprofen around lunch and looked a little blotchy faced all day but other than that was himself. Today he went to school and has been eating his normal diet of hot sauce, jalapenos and ice water! We follow up with the oral surgeon in three weeks. Thanks again for the thoughts and prayers!

We're home

First, you need to read the next post, then jump back up here.

We arrived home at about 6:40pm after his 30 min. surgery. You know our Connie, he does nothing by the book. Right after they brought us the discharge papers to sign just before 3pm, he got lethargic and limp and wouldn't respond to his name. He had been up, alert, talkative and happily drinking slushies for an hour and then this happened. It was alarming for sure. The nurse happened to be in the room when it took place because we had just called for help with getting him up for the bathroom (still had IV). She was calm, but immediately called for a doctor, which got me a little worried. His anesthesiologist was right outside the door and came in to observe. They hooked him back up and checked his vitals, which were normal. He just could not maintain any level of alertness. I later described the episode to cardiology and they think it could have been a vasovagal syncope type of thing (brief fainting spell). He took a decent nap afterward and then once we were discharged, we headed straight for the hospital cafeteria, where he'd been begging to go all day. All he was allowed was soft foods but he's not crazy about puddings and such. We let him get some salami and juice and sat down to enjoy. Moments later he vomited all three slushies! On the way home he got sick again and did so again following his bath. We gave him half a percocet at bedtime in hopes that when his local wears off he won't hurt too badly. He'll stay home tomorrow, mainly so we can make sure some food stays down. If he's doing well he'll go back to school on Thurs.

Thank you for your prayers today! They mean a lot.