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