Post Op Day #2 - Plan for the Day

Good news and bad news. Good news is that he is technically floor status. While there are no floor beds available and he has to stay in his ICU room, he will be allowed a bit more freedom. The great part about this is he doesn't have to share his nurse! The team is pleased with his progress, and planned to pull all his chest tubes today, but felt that since he didn't walk around enough yesterday they want to make really sure that there are no pockets of fluid hiding in there that need to still drain. That's the bummer part. It's harder and less comfortable to move around with the tubes, but you need to move around in order to get the fluid out. This morning's chest xray was still showing a diminished left lung. We're hoping he'll prove that he can walk a lap or two around on the 10th floor. If he can do that, his nurse has been given permission to take him upstairs to the 11th floor playroom. Part of me wants to tell his this is the deal to motivate him, but I also feel like it's not fair to even mention the "promised land" to him if he just isn't ready to move that much. What's the sense in taking him there if he can't do anything yet? After he wakes up more, we'll try to get some breakfast in him and get him up and around some. Then tomorrow they will withhold food and pull all three chest tubes and his IJ line in his neck. That's his only IV access right now and it is bothering him quite a bit. As his nurse put it, he itched away his other two lines yesterday in the backs of his hands. Since it's his IV line right now and he's on IV meds they won't take it just yet. He may have to get another poke tomorrow, but hopefully he can just be switched to some oral lasix. It's less effective, but considering he's outputting more than he's inputting, it's okay. Specific prayer requests for today include pain management and mobility. We ask God to keep his pain tolerable so that he will be motivated to move around and get rid of any fluid accumulating around his heart. We also ask that his spirits be lifted by being able to move around more and have some fun instead of laying in bed today. Please ask God to heal his lungs completely.

Post Op Day #2-AM Update

Since I didn't post a detailed update last night, I'll quickly recap his day from Thursday. It was rough. Once the Dex was turned off by 11am, he was restless and discontent most of the time. Connie suffered terrible itching from the morphine and benadryl was of little help. By evening, we were able to switch him over to all oral pain medications but his poor face is red and swollen. Between the itching and pain from his chest tubes (although he's blaming the pacemaker), he had a miserable day. Coupling his already whiny nature with narcotics made his insistence on going to the playroom an absolute obsession. Each time he woke suddenly he asked to go to the playroom and then broke down sobbing when we had to remind him that he couldn't go just yet. Playroom is on the 11th floor, where he'll go hopefully today. When we toured before surgery they showed it to him and told him they have a wii in there along with bowling sets to play with. The child life specialist even tried to bring a bowling set to his room yesterday and it just didn't cut it. We brought several sets from home and finally around dinner time got him to agree to play with one for a bit. This stubborn boy just has it in his head that he has to get there! Overnight his nurse reports that he slept in three hour shifts and got up to use the rest room a couple of times. As soon as I arrived this AM he got up and walked over to the potty again. You can tell the chest tubes are really hurting when he does that much movement because he's holding his breath. We've ordered breakfast and are waiting on the doctors to round soon. Will update shortly with the plan for the day.

Slowing Down Just a Bit

Connie is not quite ready to go as fast as some might like. We have about an hour or so to go until they turn off Dex completely. He has had some issues with suddenly waking up upset so the nurse just gave him a PRN dose of morphine. The doctor came in and said his lungs are a bit collapsed, especially on the left side. We really need to get him sitting up some today and coughing, blowing bubbles, and beating on his back to get him to open up those lungs. The nurse said it is likely that his chest tubes are what are causing so much discomfort so the more he sits up and moves some, the faster they will finish draining and be able to come out (though not today, for sure). All this is okay, though, because as we learned once before, it's all in God's timing anyway. There isn't even a bed on the regular floor available to him right now, so staying put in the ICU seems like a fine plan!

Post Op Day 1-AM Update

Conway's night in the PCTU (ICU) was unremarkable. He slept very well thanks to the sedative drip he's still on. His nurse came in every two hours to check on him and his machines only alerted a time or two. At 5 am they came in to X-Ray and weigh him and that did not go well. I excused myself from the room for the x-ray and when he woke up suddenly he was bombarded with four or five strange faces jostling him around. He couldn't find me and became very scared and cried. I reassured him from the hallway but then his cry turned into a pain cry. He said his belly hurt and was indicating the area where his pacemaker incision is. By the time the nurse got back with a PRN dose of pain meds he was back to sleep and calm. That was 2.5 hours ago and he's still sleeping peacefully! He's had a little itching from the morphine, but they can give him benedryl if he continues. Doctors have already rounded for the morning and the plan for the day is as follows: 1) Wean the Dex (sedative) down, first to .3, then off. 2) Advance his diet as tolerated (he's had nothing to eat or drink since Tuesday) and he was a bit nauseated yesterday after extubation so we need to be very careful here. We'll start with clear fluids like water and apple juice. Once he proves he can tolerate that he'll be allowed some crackers. If that goes well, he may order off the menu. 3) Control pain. He needs to be switched over to oral pain meds so they are going to introduce oxycodone once he can eat something. 4) He will keep his chest tubes today, but they do plan to remove the foley catheter and his arterial line. They haven't ruled out giving him some more blood product so they are going to draw another venous blood gas to check his levels before taking that line out. 5) He will be able to ambulate today, meaning he may move around. 6) Possibly move to the general care floor. This is dependent on coming off the dex drip. It wouldn't be until very late today if it happens at all. Otherwise, they plan to move him tomorrow. Dear God, We thank you for the healing and progress we've seen thus far in Connie's recovery. Please continue to guide those charged with his care. We ask specifically today that his pain be well controlled and that he tolerate the changes being made. We also ask that you take away any nausea or ill effects from yesterday's anesthesia so that he may eat and drink comfortably. Please allow him to find some joy in the comforts of home that we brought along such as his bowling toys and books and monkeys. In Jesus' name we pray, Amen

Surgery Day Evening Recap

Things have settled down since he was extubated at 6pm. The breathing tube is out and he is breathing on his own. He was on 2L O2 but they were weaning him down after a successful blood gas. Prior to extubation he really struggled with staying calm and stable. He was thrashing about and trying to pull the tube out himself. It is so heartbreaking to see tears streaming out of his eyes and him grimacing and trying to cry with no sound coming out. Thankfully he was given versed and they added a sedative drip so he might not remember that part. He's just at an age where he knows enough to be scared of the tube but can't be talked into just relaxing and forgetting about it. He did not require breathing treatments after extubation like he has in the past so that is another positive. His bleeding has slowed down. There was concern right after he came out of the O.R. about blood in his urine. It was quite a lot which can indicate kidney damage from the heart lung machine. They say if it goes away quickly after surgery it usually means no long term kidney damage was sustained. His urine has returned to normal. They started to wean down his sedative after extubation, but decided to leave it on tonight to let him rest and wake up more tomorrow when he'll hopefully get some lines out. He woke up once a few minutes ago and in his hoarse little voice he said he was going to throw up. He gagged a little and then went back to sleep. They won't give anything for nausea until they actually throw up :(

Sorry for the lack of updates this evening. The hospital's WI-FI has been really sketchy all day and it is not easy to compose a lengthy update on the phone. Plus, we've been kept hopping!

Post Op Surgeon's Report

Dr. Bove just left us and said he's very pleased with how things went. He expects him to fly through recovery and feel much better now that the pressure load is off that valve. He used a 23mm human donor valve and pulmonary artery. Bypass time was 2 hours and his heart was stopped for 49 minutes. Tricuspid valve leakage went from severe to mild just from the new conduit! He still has mild aortic and mitral leakage, but his function is excellent and heart looks great. He was really thrilled with what little trouble they had getting back in. He said the sheet of goretex he placed over the heart last time (and again this time) probably cut an hour off the case. We are going to grab a bite and then see him at 2pm EST. his plan is to extubate today, as long as bleeding and pain are well controlled. He has three chest tube drains.

Surgery Update #3 and #4

Dr. Bradley just came to report on his portion of the procedure right before Kim came to update on the rest. Dr. Bradley said things are great with the pacemaker. The battery is quirte a bit larger, unfortunately. Also, bi-v pacers don't last as long. He estimates six years for this new one. Good news is his RV lead was using very little output and after the new LV lead got moved to a second site, they got a lot more efficiency from that spot as well. He said it was a good call to switch him, as the new pm gave his blood pressure about a ten point bump. He said his heart is going to really like having that extra squeeze. Kim said he's off bypass and all they have left to do is close him up. She estimates we'll see Dr. Bove in about 30 minutes and then be able to see Connie about 1.5 hours later. Thank you, God, for blessing his doctors with such skill and knowledge. We trust that you will continue to be with Connie during his recovery.

Surgery Update #2

Kim came in shortly after 11 to tell us that things are still going well and he's on very little medication, or pressure support. The new conduit and valve were in and they were confirming good lead placement. They were trying to wean him off bypass and Dr. Bradley was fooling with the new pacemaker settings. She estimated she'd be back after 12 and we'd be seeing Dr. Bove shortly thereafter. Dr. Bradley had good news! He said that once Medtronic was "done" with his pacer, they may mail it to us.

Surgery Update #1

The nurse practitioner, Kim, just came by about 15 min. ago with the first update. Our internet connection has been sketchy so far this morning so there may be some delays. We are able to post FB updates on the phone though because we are lucky enough to have Verizon service and they have a tower in the hospital! The old conduit is out. Dr. Bove is getting ready to put the new, VALVED conduit in. Yes, he is for sure getting the new valve along with the conduit this time. He would have had to make his pulmonary valve even smaller if he repaired it, which would have created a problem with the new, larger conduit. He's been on bypass for about an hour so far (went on at 9:40 am EST). We should get our next update around 11am EST. He won't be allowed to keep his old pacemaker. She said the biomedical companies prohibit that practice. We thought he'd be able to take it to school to show it off, but I guess not! Oh, and Dr. Bove said he'd likely be out of school about a month. He said that's kind of conservative, but he'd be concerned about him carrying around his backpack and things. I told him how we were hoping that he'd get as much time to bond with his new classmates in Primary as possible and he recognized the social emotional aspect and how important it is, so we'll just have to see.

Surgery Day

Conway has been in the O.R. since 7:30 am EST. I was able to gown up and go back with him and stay with him until he fell asleep. That was his biggest fear, that we would leave him. We are so grateful for the anesthesia team for letting this happen. Connie was crying a bit when they put the mask on his face, but after singing our ABC's all together, he was out. There was some issue with the consent form since it didn't say specifically he was getting a new valve. Dr. Bove came up to the waiting area and spent about 20 minutes going over the procedure again and his reason why he may go ahead and replace it along with the conduit. He is using an adult sized conduit, which may prove tricky to attach to his native valve. The fiddling with the connection might actually cause his already leaky valve to leak worse. This will likely give him a better outcome from this surgery. Also, future valve replacements could be made easier by having a uniformly sized and shaped valved conduit already in place. He said there is no reason why he couldn't get a melody valve (via catheter) in the future. He may need to take a baby aspirin daily for the rest of his life. We should be getting updates approximately hourly. Thank you for praying alongside us today.

Here he is in the pre-op holding sniffing all the flavors before deciding on fruit smoothie for his mask.

Travel Day

Connie and I arrived in Detroit after a very fast flight and Greg picked us up and we drove to Ann Arbor. We were able to check in early to our hotel room and lay down for a little rest (although no one slept!). We drove to a nearby park to spend a little time on the playground and look at the ducks and geese in the Huron River. Conway wanted sherbet so we went to Baskin Robbins where he ordered the wreckless sherbet. After finishing that cone he asked to try the rainbow sherbet. Ice cream for dinner seemed prudent for a very brave boy on the eve of his surgery. Now he's snacking on popcorn and raspberries! We'll check out some Olympic coverage tonight and try to get some sleep before we have to report to the hospital tomorrow morning at 6:15 EST. Please say an extra prayer for him, that he'll remain calm beforehand and that all involved in his care will use their talents and gifts to do their very best for him.

Pediatrician Visit

We made a very unwanted office visit yesterday. I would rather put him in a lion's cage than take him into a germy doctor's office six days before open heart surgery, but after posting a picture of his mosquito bite on Facebook, my nurse and doctor friends convinced me to get it looked at. It was pussy and blistery and oozing and just not looking good. We've been in before for this reaction to bug bites and always just get some antibiotic ointment to rub on it a few times a day. I was sure that was all it needed, but it was looking worse and not better so, begrudgingly, I took him in. The office staff were nice enough to take him in through isolation. Basically we went in a delivery entrance and straight to an exam room. We were able to avoid both the well child and sick child waiting rooms! He also wore a mask the entire time, which I was lucky enough to get my hands on when I was at SLCH for a meeting Wednesday evening. Pediatric masks are not easy to find. The doctor looked at it and said it was not infected and to just continue with the ointment. Phew! Today is a different story. He has been complaining of a severe headache since lunch. Pray it's just a migraine! We fly out Tuesday for surgery at 7:00am Eastern on Wednesday.

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.

Make a video - it's fun, easy and free!
www.onetruemedia.com

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.