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.