We're here

We pulled in around 5:30pm eastern. Took about 8.5 hours total. Connie was great all day. He's a little clingier than normal--me walking into the bathroom into the hotel room was enough to bring tears! Other than that it's been fine. He's still awake now so I better sign off.

Prayer Card

If we didn't have your address here's the prayer postcard we sent out. . .


Greg and I both had some very sad moments last night. When I drove by Baue at Cave Springs yesterday there was a funeral procession heading into the cemetery and I started going to that scary place in my head thinking about the possibility of that being us someday in the near future. Then I started thinking where would Greg and I want him buried if that happened and thinking about Assumption's cemetery and then thinking about Mookie playing on the playground at Assumption someday and other kids seeing the name Beckemeier on a headstone and asking her if she was related to that person and what she would say or how she would feel. Then last night, as we were leaving soccer practice at Assumption, Greg was holding Connie and Connie kept pointing to the cemetery (you have to walk through it to get to the soccer fields) and saying something. Greg thinks he was saying "flowers" but he immediately got that creepy feeling and told Connie to stop pointing to the cemetery. We both feel better today, so that's good. I got up early and once I get Mook to school I'll get the finishing touches on the packing done.

Generosity

We have been so blessed the past few days with emotional and financial support from family, friends and even complete strangers. We were surprised by a donation to the Care4Conway fund from friends of a friend, Jim and Pam Boehm, on Saturday night and then on Sunday we spent the day with family who threw a party in Connie's honor. Aunt Sam, Uncle Mike and Aunt Mary, Grandpa Jim, Aunt Carole and Grandpa Gil-your gifts are so appreciated. Even my parents have gone overboard pampering us and the kids lately. Mookie and I got to enjoy a pedicure thanks to my mom on Monday. Grandma Marybelle even surprised us with a quick visit to see Connie before he heads out of town! Also on Sunday, Connie got some pictures taken by a local photographer who has a passion for kids with "special needs". She was kind enough to come out to the club to take some pics of him on the course and in the pool. Thank you everyone for your support! Your prayers especially mean the world to us.

Information Gathering Day

Today has been very informative, yet a bit overwhelming. A nurse practitioner from U of M cardiology called and went over the "what to expect" stuff for the cath and pre-op day on 8/24. Turns out, they will be admitting him Monday night and it is possible that he would be inpatient up until his surgery on Thursday, 8/27. As she put it, they are going to "stress him" a lot during the cath and EP study so it all depends how he handles it. We will show up Monday morning at 10:30 am for his chest x-ray and EKG. We'll also talk to the anesthesiologist at that time. Then at noon he'll go into the cath lab for what they expect to be about a 4-6 hour length of time. They may go ahead and ablate while they are in there if they feel they can. That would be ideal because it would shorten his time on bypass during surgery on Thursday. After that's done, he'll go to the recovery room for an hour and then be admitted to 5E, the general care floor (assuming he's okay) for the night and the plan would be to get a "pass" or be discharged Tuesday morning. If they feel like they need to tweak him a bit more before surgery, they may keep him until Thursday. I have to admit, during our talk, I got pretty scared at some of the things she mentioned. She said that some kids, following valve surgery, have high pressures in the lungs and need to be on a ventilator for several weeks. She said that this might be another marathon stay for us. Ouch. Luckily, we just got off the phone with Dr. Bove and he made us feel a lot better. His goal is to fix the mitral valve the absolute best he possibly can to where it is leaking no more than a mild amount. If that happens, it will take a lot of heat off the aortic valve and should help Connie out considerably. He feels the mitral has the best chance of being repaired and if he ends up having to replace it with a mechanical valve, he may go ahead and replace the aortic too. Remember, a mechanical valve would mean a lifetime of coumadin (blood thinners). He stressed that this is his last resort. He is a very conservative physician when it comes to valves because once you replace them, you can never go back and put the old one back in. You have a lifetime of replacements. If you repair it and the repair isn't good or the valve isn't handling the repair well, you can always reoperate and replace at that time, but you can't ever take back a replacement. He said he'll go ahead and take a look at the conduit while he's in there and if it looks like it's near the end of it's life, he'll replace that too. He said, "If it's not broken, we won't fix it." He said he doesn't estimate that he'll be on bypass anywhere near the 5.5 hours he was on it for the Double Switch. There is so much more that had to be done that time so this time he doesn't foresee that. We asked him to compare the risks vs. the risks with the DS and he said the overall risk is less, but it is still a "very major operation", especially given the complexity of Conway's case. It carries with it all the normal risks associated with open heart surgery: organ damage, seizure, stroke, bleeding, death, etc. He said that the measure of whether or not this surgery is successful is for his Left Ventricle (the pumping ventricle) function to improve and we should give it six months post op to tell if that has happened. He said he believes we are far away from talk of transplantation and he could possibly even reoperate later down the road to keep trying to work with the heart he's got to improve that function. As far as length of time on the vent (breathing machine), he said he expects a few days following surgery and as far as the time he'll be in the hospital, well that totally depends on what they have to do. If all goes off without a hitch and he gets his valves repaired and not replaced, it could be as short as ten days! If they have to replace with a mechanical valve, that will add to the time. Other things can add to the time as well as complications (which our boy is known for!). He's already stopped his amiodarone and tomorrow is his last day of Coumadin. Then on Sunday night, he's not to take his Enalapril and we're holding his Digoxin and Enalapril on Monday morning.
Specific prayers, aside from having safe travels to Michigan on Saturday, include praying that he will handle the cath well and be able to get out of the hospital on Tuesday morning so he can see some sights (perhaps the petting zoo or teddy bear museum) before Thursday. Also, that Dr. Bove will be able to repair the valves Connie has and that his LV function will bounce back quickly.

If this is too hard to understand, sorry. I tried to simplify it as much as I could since I've been hearing so much lately that my updates are too medical-ease sounding! I guess that's what happens to you after you spend two years talking to doctors and nurses on an almost weekly or daily basis. If you want, you can ask Greg as my mom thinks he explains things better!