1st Surgery Update

The Nurse Practitioner came in at 10:45 to say they just "got started". I guess it did take a while to get safely back into his chest. We'll hear more in another hour. Things should go a bit more quickly now, but they also don't like to give updates unless something is accomplished.

In Surgery

Conway was taken back to the OR around 8:40 eastern time. They said it could take quite a while to get through the scar tissue from the previous surgery so not to expect an update for a few hours.

He slept great all night. Woke up at 7am asking to "eat". They were supposed to take him down at 7:30am for pre-op but no one came. I asked at the desk and they said that downstairs would call when they were ready for him. 25 minutes later I asked again and they called downstairs and the people downstairs were waiting for us. They apparently had not been told that he was inpatient so didn't send up transport or orders for him to come down. They thought we'd just report down there at 7:30. Then Dr. Bove's assistant who was getting consent wanted to remind me about the large possibility of Connie getting heart block and needing a pacemaker after this surgery. I said, "You mean like the one he already has?" That made me feel great that he had really done his homework on my boy (note sarcasm). I must say, though, the anesthesiologists have really been on their A game here. They all have his entire history memorized. The one today is from the UK and has worked with CT surgeons like Marcus Hall and Bill Brawn. He's phenomenal. He said were in one of the top two places in the world for this and Connie couldn't be in better hands. We were joking about how it seems that Connie has a rather high tolerance and he said that the good thing about his profession is that they "always win", meaning that the anesthesiologist has the final say since they just add more or whatever. It was cute. We didn't get a chance to talk with Dr. Bove before hand and were a bit bummed by that, but to tell the truth, I didn't think we would anyway.

They tell us that on a scale of 1-10, this surgery is on the level of a 9. So, I guess that means we need to intensify our prayers!

Connie was such a good boy. He got some versed in his IV and still was a bit unhappy (hungry) but they wheeled him away in a red wagon without any crying or anything. He took the iPod, his monkey lovey and his bag of blessed things into the OR with him.

Ablation

The doctors are finished. The ablation went well. I'll let Erin explain it in more depth on her next post as she's so much better at it than I am. Surgery is on for 7:30 am CST tomorrow. Dr. Bove will finish up a few loose ends regarding the ablation, but it will add very little to the time Conway's on bypass, which is GREAT. Erin is now with Conway as he recovers. Pray for a good night's rest before the big day tomorrow. God bless all of you, the support we've received has been nothing less than remarkable!
Greg.

First Cath Update

Well, he was taken late partly because the case in front was running late so they had to set up an entirely different room, but even then, they had to wait for an anesthesia team to become available. Dr. Lewis (who has a killer accent, by the way) is the anesthesiologist who will be on the case. He said he did his homework for this case and is ready for what Connie will bring. Apparently it takes quite a bit to keep that boy down. Just learned today that he woke up in the cath lab on Monday and had to be given more drugs! No wonder he slept through the whole night!

Brynn called some time ago to tell us that things were going well and the next update would be from Dr. Bradley himself when they were finishing up. She also said that Dr. Bove did get in touch with them and apologized for not having spoken with us directly before now but that he would talk with us in the morning. He's had mulitple OR cases today. He has had a chance to review the information and says, yes, he still feels surgery is the best, most appropriate option at this point. Since Conway will be admitted again tonight, they will just take him down to the OR around 7:30am Eastern time and the surgery will start at 8:30 eastern. Time to turn those prayers up a notch! If they aren't able to ablate him tonight in the cath lab, they will try to pace him out of the flutter (which has never worked in the past) or use the catheters to get it to stop. If that doesn't work, then they'll have to cardiovert him again. This scares me. That would be a lot for his little heart right before tomorrow's surgery. Brynn says the risks aren't so much increased doing back-to-back procedures heart wise, but it's more that they don't like to use so much anesthesia so close together. He will be out all evening and then early in the morning get it again. That's a lot for a little body. Pray that he can handle it all.

Running late

The case before Conway ran late, so they've just taken him back for the cath. Erin said he has all his blessed trinkets and she also doused him with some Lourdes water. Uncle Tim & Terry arrived and got to see Conway before they whisked him away, so that's good. Will post when I know more. Greg

Prayers are working

because he fell asleep about 12:30ET and has been sleeping since. Hopefull he'll sleep close to the time they take him.

Forgot to mention a funny story earlier. So we've loaded up three loads of laundry and headed out with him, the stroller, the hamper and detergent. On our way to 5E to do some loads. No sooner do we leave our room at the Med Inn, does the fire alarm go off. I'm thinking you have to be kidding me! Aunt Barb carries the clothes and I carry the stroller from the 5th floor to the ground down the stairs since you can't use elevators during fires, right? We get down the the lobby to hear an announcement saying they are doing a fire drill in the Med Inn. Lovely. I'm glad I didn't trip down the stairs with the stroller! No fire, just a drill. Now I know how the kindergartners feel that first time in school. I felt like crying too!

Pray for patience

for all of us. Connie is asking to eat and obviously is not allowed to. He has two more minutes to drink apple juice and then that's off limits too. We're up on the 8th floor trying to keep him busy, but it's raining hard out so the playdeck is closed and there's not a lot more we can do to distract him. We are to report downstairs at 1:30 and then they are planning to take him to the cath lab at 2:30.

Conway is in flutter

Hi everyone. this is dad writing. Just spoke to mom. Conway was acting strangely the past few hours so mom asked if they could test him. They did and he is in flutter. So: a cath is scheduled for 2:30pm eastern time so they can map the heart and perhaps perform an ablation. This is a double edged sword. On one hand, we're glad he's in flutter so they can map his heart, on the other hand, we hate to see him so unhappy when his heart is not working right.

I'll post as soon as I know more. It sounds like Dr. Bove is going to recommend we move forward with open heart surgery to repair the mitral valve, and the ablation will either be performed this afternoon or perhaps during the open heart surgery. We're thankful his little heart is "telling them" where it needs to be fixed, but we're also very scared. Please keep praying, I promise to update as soon as I know more...

Greg

Evening Update

Still haven't heard from the team or Dr. Bove himself. Echo was finished up about 3:45 or so. Dr. Ensing, the cardiologist that read yesterday's echo, did it himself today. He even did some on the 3D imaging. He thinks he got some good information today for Dr. Bove to be able to make the decision about what to do. We went to the gift shop and bought some bubbles and went out to the meditation garden and blew bubbles. We sat in the lobby for a bit watching the iPod and then he wanted to take another nap so at 5:30 he fell asleep for the third nap of the day.

Echo Update

I hate how these always post in reverse chronological order. . .
Here he is back at the MedInn

With Dr. Bradley this morning

Sleeping this morning with his own blanket and pillowcase!

Getting moved to the floor

In recovery

Construction of new hospital progress

Killing time on playground before cath

Sight seeing in Ann Arbor

Posing with Big Bird near the front entrance


Dr. Bradley (EP) called and gave us a bit of a status update. The main guy that is reading the echo from yesterday evening says that he wants a better view of the mitral valve, meaning they need to repeat the echo. The saw the valve in the cath lab, but the best view of it is actually on echo. So, we are waiting on a call from him to tell us when to go back over to the hospital and have that done. He didn't say whether or not they'd be sedating Connie, but he didn't tell us not to feed him either, so my guess is he'll just cry through it. He's usually such a good boy for all his testing, but he knows something is up and doesn't feel good so he's not having any of this. We had to wake him up a little before 8 am to go down and get another EKG, pacemaker interrogation and hook him up to a 24 hour holter monitor. He'll wear the monitor until tomorrow morning. He's had no bleeding from his cath sites (on both groins) and all seems okay. Just some tylenol for pain. He fell asleep about an hour ago and is out like a light. While we were waiting for discharge he ate a little granola bar and some cheerios and chocolate milk. No nausea!!
Okay--quick echo today at 3. Guess we probably won't hear from Dr. Bove until after that.

Grateful

Praise God Connie had a great night. He finally got in a room about 8:45. Despite his roommate's alarms and frequent door opening and closing he seemed comfortable and peaceful. He was agitated and fussy around 5am so they gave him some tylenol and within 20 minutes he was back to sleep.

Dr. Dick (EP) was just in and went over some of yesterday's events and asked what Dr. Aiyagari found. I told him all of it and he said, "Let me tell you a little secret. Whenever you can avoid an operation, do it." Maybe this is all for a reason. Who knows. Maybe they'll say surgery is a no go. He thinks he looks healthy and then asked what meds he was on. When I told him, he said, "Well, he's on all of them already so we'll just have to wait and see what they (Dr.Bove) say." He said he was glad it wasn't him having to make the decision.

4th Cath Update--Disappointment

Ugh. Dr. Bradley was unable to induce a single extra beat. He couldn't get Connie into atrial flutter at all so therefore they could not get a map and could not attempt ablation. No mapping means no information for Dr. Bove either. He said he does think there are a couple of places that he is pretty sure are causing some problems, and that Dr. Bove could possibly still try to freeze those areas during surgery on Thursday, but now they are not so sure that he will even want to go ahead with surgery give the total picture. We are in limbo right now. Dr. Bradley is calling Dr. Bove now and said they all need to put their heads together and come up with a plan. I asked if those discussions could involve Dr. Bromberg and he said he is certainly going to get him in on this. After they all talk, Dr. Bove will talk with us and we will decide together what to do. He may go ahead with surgery and send him home on amiodarone for another year and then try again at that time to do an EP/ablation or he may say send him home now and manage the leaky valves for longer. I would love to avoid surgery, but I don't think I can deal with Connie for another year or more with his current level of decreased activity and increased neediness! We'll see what they say. He should be leaving the cath lab in the next few minutes and heading up to recovery. They'll call me when he's there and I can come be with him. They are going to watch him overnight, especially his blood levels. They are keeping his arterial line in so I don't even know if I'll be able to hold him with that in. Hopefully I can. He's much happier that way. They said they think they replaced all the blood he lost, but that he might have been a bit low to begin with and they wrote orders for him to get more through the night if needed to bring his levels up to prime if he is indeed to have surgery on Thursday.

Dr. Bradley said his lovely nurse who prepped everything that would be needed for today was so let down by this. She put so much work into this case and she told him it was like she prepared a huge Thanksgiving Dinner only to have the dog eat the turkey! I did laugh when he said that, but I can't help being disappointed. We wanted so badly to get EVERYTHING fixed while we were here and now it looks like there's the potential to get nothing repaired, just go home as is and wait. Pray now that Connie will be okay when he wakes up and not nauseous or too fussy. Pray that he has a good roommate and can get some rest tonight while he's inpatient and that he feels "all better" tomorrow and can get out of the hospital for a couple of days.

2nd/3rd Cath Update

Dr. Aiyagari just called. Connie is doing well. He is receiving a blood transfusion now because he lost a lot of blood when an arterial line decided to "work it's way out". Other than that, it sounds like fabulous news to us. In the doctor's words, things look better than expected in most areas. His left ventricle function is better than expected and there is no LV dilation! The aortic valve is leaking a "mild to moderate" amount only, not necessarily even needing to be addressed surgically. The mitral valve is as expected and leaking a "substantial" amount. That fits with what Dr. Bove told us his plan would be anyway--to attempt to repair that mitral as best as possible in hopes that it will take some of the pressure off of the aortic too. So, all is looking in a positive direction. The doctor says his conduit looks small for him which is understandable since it was placed when he was only 5+ months old. It looks like that will be replaced during surgery, but that will be Dr. Bove's call. He still has stenosis in his right pulmonary artery and branch arteries, but the left is wide open. Dr. Bradley is working now on the electrical portion, trying to get Connie into atrial flutter so they can map it out and possibly ablate it. Please pray that this part goes smoothly and Connie cooperates. It is possible that they won't be able to get him into flutter, meaning they would have less information to give Dr. Bove to use during surgery. Pray that they get him into flutter and can ablate it in the cath lab.

Dr. Aiygari said that there still is quite a bit to do and that he'll be in there for some time. This is not a short process. We'll update when we hear more. Thanks for your prayers.

p.s. Greg and Mary Kathleen will be arriving at Applebee's on MidRivers Mall Drive around 5pm tonight for the Care4Conway benefit to help offset the cost of the trip and insurance premiums. They'd love to see you and get a hug from you!

1st Cath Update

Connie is doing fine. They just got all the lines and catheters in and now are about ready to start Dr. Bradley's part, the EP study. This will be the longest part of the procedure. He told his wife not to have dinner ready for him! They had no trouble getting access. Some kids have occluded veins and arteries so it can be challenging getting in. Not with our boy. We might just get that "best case scenario" yet! Dr. Ayagari (sp?) said all the stars will have to be aligned, etc. We know our God put those stars in their places so He can give us that outcome. Keep praying!

In the Cath Lab

Connie is now in the cath lab. As of 1pm Eastern they took him back and gave him the gas. He did not like the NP that was testing him. He never fusses for pacemaker checks and this one was quite long and he cried through the whole thing. We were also told that they would be getting all his blood and echo done after he was asleep but they wouldn't start the procedure without an INR level so he had to get a toe poke/squeeze anyway. He also didn't like the versed in the nose, but it did the trick of making him loopy. By 1pm he was quite hungry and tired and fussy with being messed with so even with the pre-med on board he was still quite agitated. We should get another update around 2:30 eastern time so I'll try to post then what is happening. Dr. Bradley and Dr. Ayagari(sp) are doing the cath and EP. We remember Dr. A from the last time we were here. He took care of Connie in the ICU for part of the time. He said he would be surprised if Dr. Bove didn't replace the conduit because the mitral valve is actually behind the conduit. It would be incredibly difficult to get in there to repair it without cutting out that conduit first. I asked Dr. Bradley about how many successful ablations have been done here on kids with Connie's anatomy, meaning, kids who have had a senning procedure. He said Connie would be the youngest (smallest) ever. Here's to making U of M history! Hail, Hail Michigan!!! Okay, Aunt Barb and I are starving so we are going to grab a bite before the next update. Since he couldn't eat, neither could we!

Oh, a note to the O'Leary kids: Your mom's phone charger is dead. She still has some battery, but has turned her phone off. You can call my cell # if you need her.

Crazy Night

Guess who woke up at 1am and didn't go back to sleep until 4am? That's right, Connie (and therefore me too). At 2:30, he asked to eat, and knowing he wasn't allowed anything after 6am, I gave in to that request. We went down to the lobby and had 1/2 a twinkie and some apple juice. When he woke again at 7:50, the first thing out of his mouth was "eat". This is going to be a long morning! Pray that we are able to keep him busy and keep his mind off of eating.

Ready for the big day...well, one of them

Connie did take a great nap. Even slept through the room change! When he woke up it was raining so that blew our plans to go to the petting zoo, but we did hang out awhile at the hotel and then it cleared up enough to go walking the main drag in Ann Arbor. We went in a few shops and bought some Michigan t-shirts and then went out to dinner. We even were walking through the quad area and they were shooting a movie. Who knows, maybe we'll be movie stars! We got back and video conferenced with the family back home and now he's in his booster chair eating goldfish, mandarin oranges, M&M's and water while he watches his Max & Ruby on the iPod. He must know that he has to go without breakfast and lunch tomorrow.

We will try to keep him as happy as possible until his appointments starting at 10:30. They are scheduled to take him into the cath lab under a general anesthesia around noon. We shall see if that is the case. I'm sure going to push for them to put him out as close to that time as possible since he will be STARVING and probably a bear to deal with. Please pray tonight that he is cooperative and not too fearful tomorrow and that he is easily distracted in the morning while we wait for noon to roll around.

Free Day

Today is a free day for us. Not a great night of sleep for any of us, but what can you expect? We went to Mass this morning and then out to a great spot for breakfast, Angelo's. Now we're back and trying to get Connie down for a nap and they come tell us they are moving us. So, we'll see if anyone gets a nap today. We're hoping he'll sleep for awhile and then this afternoon we can go to Domino's Petting Zoo. The weather is cool enough for a jacket! Isn't this August?! The sun hasn't peeked through too much the last two days. Not terribly ugly, just a little depressing. Of course, I'm already a bit predisposed to the blues given what we're here for!

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!

Michigan Keepsakes

Connie's Grandma Marybelle and the daughter of a friend from church, Hannah Martin, handmade him pillowcases and a blanket for use during his upcoming hospitalization. They are all themed after things he loves--Elmo, Thomas, animals and monkeys! Below are the pics I took of them. Aren't they cute? Thanks Hannah and Grandma! My brother's family from Texas came up for a visit this past week and brought with them a special cross and pocket charm for Connie to take with him too. Thanks guys! There's even a pic of him eating a snack while I took the pictures.




This one even says "brave". . .

Event for Connie's Fund

Hello Everyone! One of Conway's biggest fans, Carol Stadler, has graciously volunteered to organize a fundraising event to benefit Connie and help out with the health insurance premiums (COBRA) and lodging, etc. for his trip to Michigan. On August 24th, from 5pm-8pm, we hope you can make it out to the Applebee's in St. Peters for some food, fellowship and fun--for a great cause! You will also have the opportunity to purchase a "Pray 4 Conway" wristband and give Greg and Mary Kathleen a hug on Connie's big cath/pre-op day. Click on the link above for directions. You MUST present the coupon in order to have a portion of your meal donated to Conway's fund.

Getting Closer

You know you're getting close to the surgery date when the doctor's office calls you and wants you to start decreasing and stopping certain meds. During the catheterization and the EP study, they will actually be inducing atrial flutter so that they can map out exactly the part that will need to be cauterized or whatever during the surgery. Therefore, he needs to stop the amiodarone by next Monday and we've already cut his dose by one third. Now we just have to cross our fingers that what he's taking now is enough to prevent an episode of flutter before the 24th! Also, he needs to stop the coumadin about 10 days before any invasive procedures so that means today or tomorrow will be his last dose of that. I think Colleen is checking with Dr. Bromberg to see if he just wants to have us send in a pacemaker tracing today and if it shows no high rates just stop the coumadin now.

I am really going back and forth between feeling like I'm dying to get up there and get this part of the process over with, and wishing we could put it off another six years or so. I just don't know how I'm going to deal with those eyes looking at me with that "how could you do this to me" look. It's not like we can tell him it's for his own good and reason with him. It's not like we can say, "but you'll be able to go up the stairs again and play and have more energy." I am starting to think he prefers being carried around and spoon-fed anyway!

He had speech today and did great. He's getting a little fiesty when it comes to only wanting to play with what he wants to play with. He was loving these cards that Ms. Chris brought but when she wanted to play with something else to work on a different skill, he balked and fussed until she gave in and let him play with the cards. He's even got her wrapped around his little finger now! Oh well. She agrees that we can push him after he's feeling better. Stinker.