"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Friday, December 30, 2011

End of Year Update

With 2011 coming to a close I thought I'd take a moment to fill you in on our dear Connie and the rest of the family. He's healthy as of this moment (actually the healthiest in the family---half the others have strep!) and has been having a pretty good run. He was just prescribed glasses again... he had them for a brief time when he was very young. He looks just dashing in them. He knows he can take them off at night and if he's napping so he asks for a nap constantly now to try to get some time sans specs. Of course he's not really falling asleep for the most part, little devil.

He had a fabulous Christmas and absolutely LOVES his automatic bowling lane and table tennis set.

He saw his oral surgeon again today and the date was set for the extraction of that supernumerary tooth. It's going to come out on March 6, 2012. We'll go back to see him again in late Feb. for a physical and to meet with the anesthesia team, but it should be pretty straightforward. Please pray that he will be in top health when the time rolls around for this procedure and that all goes smoothly.

Mary Kathleen has been having daily migraines and stomach issues which we think are related to some anxiety-type issues. She's quite the little worrier and is easily overwhelmed. Please say some prayers for her as she prepares to transition to a new school in January. It is one where we hope she will be able to find her voice.

Karsten is a joy, as usual. He still dislikes most people that are not in his immediate family and grandparents. God help the little old ladies that smile at him in the check-out line. He scowls at them until they look away! He's been singing his ABC's and other nursery rhymes and LOVES to throw his food down to the dog.

Cece is starting her final semester in elementary school. She's a great student, as evidenced by her latest report card. She volunteers to serve at mass and is still involved in the girl scouts.

Greg's business is undergoing some big changes and we are both filled with some anxiety over the future. Please keep him in your prayers at this time, that he would continue to seek the will of the Lord in his decisions, and that he be able to turn over any fears whenever they present themselves.

I promise I'll get some pictures up soon! Thanks for thinking of us!

Sunday, November 6, 2011

Ann Arbor Visit

Conway, Mookie, my dad and I flew to Ann Arbor for a quick weekend getaway to tour the new C.S. Mott Children's Hospital. We were invited to the Creator's Preview since Mary Kathleen made a clay tile that was used to decorate the interior of the new building. Her bunny tile that she made in Conway's honor back in 2007 is at the check in desk of the Michigan Congenital Heart Center. To access the photos, copy and paste this link into your browser. From some reason it's not letting me link it. http://www1.snapfish.com/snapfish/thumbnailshare/AlbumID=3842718012/a=97017826_97017826/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/ It was the first time for the kids to fly that they remember. The last time was that 2007 surgery trip.

The kids really enjoyed the trip, especially going into the O.R. and playing with the sink the surgeons use to scrub in. They got to see the Physical Therapy gym, indoor playground, Ronald McDonald house, therapy dogs and so much more. One floor had a life-sized game of "Operation" and Mookie was quite skilled at removing the pieces without making the buzzer go off!

It was nice to go for a good reason this time and not a scary one. We didn't even go near the old hospital building. I really didn't want to conjure up any of those old feelings and I figured it was a time to celebrate and not relive the pain of the past. Hopefully the next time we have to go for a surgery we'll have this experience to look back on and go with positive feelings.

Friday, October 28, 2011

Extra tooth update

Conway had a follow up with the oral surgeon today. Dr. Noble repeated his x-ray and determined that it is time to get that tooth out. We go back in a month and will probably schedule the outpatient procedure for sometime over Christmas break. I wish it didn't have to happen at all, but feel reassured that all will be well. The doctor said that by day two post op he should be back to himself and he may even be able to save the two front baby teeth.

Saturday, September 24, 2011

6 Month Cardiology Check-Up

Time has flown by. I can't believe it's been six months since we last saw our friends at Mercy Children's Heart Center. The whole staff couldn't get over how great Connie looked and how grown up he appears now. It must be the spiky, gelled hair-do. Conway went in late Thursday afternoon after waiting all week. I had told him about the appointment on the Sunday prior and he squealed with delight and asked/reminded me every day leading up about the visit. He happily went through all the assessments and answered questions when asked. It's fun to see them involve him more in his care now that he's older. I can only imagine how I'll feel when he's a teenager and they'll discuss it all with him and I'll merely be a spectator.

His pacemaker report showed that he's got about six years of battery life left on his current generator. This is great news! I am not sure without going back and looking at old posts, but I think the last time this was checked it showed 4.5 years. That means it's added energy! Dr. Bromberg commented that he's never seen one go down this slowly before. How awesome is that?!

After his echo was reviewed, we learned that there has been no change since the last one. He still has leaky valves and obstruction/narrowing through the RV-PA conduit, but it hasn't worsened and it's well tolerated at this point (no RV or LV dilation, no symptoms). His tricuspid valve is the leakiest, but since his anatomy is so weird, it's actually in the pulmonary circulation and therefore doesn't affect his heart function much. The trouble with it being in the pulmonary circulation is that his conduit is obstructed as well. In essence, he's pumping against obstruction AND the blood is regurgitating back through the leaky valve, further limiting flow into the lungs and creating more work for his RV.

At this point, we are barely increasing his two heart meds, Enalapril and Aldactizide (just to keep the dose accurate for his current weight). We'd like to eventually take him off of the diuretic since we're not convinced he needs it, but the last time we tried that he gained a few pounds rather quickly due to water retention. Needless to say it's not worth it to us to risk that again. Why mess with it if it's working, right?! We'll send in a pacer check over the phone again in three months and he'll be seen again in the office in 6 mos just to keep an eye on that conduit. Maybe Connie will be one of those lucky kids whose conduit that was placed in infancy lasts until he's 8 or 10 years old. Wouldn't that be amazing? We were first told that it would last him anywhere from 3 months to 3 years. It's already been 4 years and Dr. Bromberg told us it could be YEARS before it needs replacing.

We went over lots of issues, including development and diet. Dr. Bromberg is amazed at his speech/language and cognitive abilities given what he's been through. Connie was disappointed to hear that he needs to lay off the hot sauce, but he's been a trooper about it and hasn't had a drop since the appointment because "Dr. Bromberg said too much hot sauce is not good for my heart." (it's loaded with sodium... plus, it's just weird for a kid to eat hot sauce with every meal/snack).

Thanks to everyone who continues to pray for our boy. He brings us such joy (most of the time) and is a living testament to God's grace, mercy and miraculous power! We are so grateful he is doing so well today and ask for prayers for continued good health and happiness.

Wednesday, August 31, 2011

School has started... and so have the illnesses!

Connie's first day of PK4 was Aug. 17th. When we went to meet the teacher night he was especially excited about the pretend play area and making pizza. Since starting he's talked about the workbench and bowling. He seems to like his new teachers (all 4 of them). He's also attending Assumption's Preschool program in addition to the three mornings a week he goes to United Services. That transition was a bit rocky at first, due mainly to the fact that my classroom is connected to his classroom and he had some trouble understanding the boundary that first day. Since then he's done fine. It's a long day for him, but he seems to be outgrowing naps anyway.

Last Friday he wasn't acting himself and looked very sick. He had four immunizations on Thursday so we thought he was just having a reaction to the shots (after we panicked and thought it might be heart related... it's a reflex, can't help it!). We sent in a pacemaker tracing just to be sure and it looked fine. Saturday morning he woke up feeling great. Same for Sunday. Monday he went to school and seemed okay but at soccer practice was he barely participated at all. Early Tuesday morning (1:30am) Greg heard him wheezing loudly so he ran in to find him sitting up in bed struggling to breathe. He woke me up to get Connie a breathing treatment going while he called 911. By the time the EMT's got there, he was stabilizing but they felt he needed to be seen and they suspected croup. They were right. He was diagnosed with croup and given a dose of racimic epi and monitored for a few hours. He slept a lot on Tuesday but was ready to go back to school today. This afternoon when he got off the bus the driver said his teacher told her that he'd been complaining of a headache but still participated in activities. Mookie has been home sick from school herself these past two days with headache, sore throat and barky cough as well. I guess they both have a similar virus. Now tonight Karsten started up with a low-grade fever. I'm so afraid this is going to be a very long winter if it's already starting!

In better news, we are on the heels of a couple of big milestones at our house. Last Saturday and Sunday (8/27 & 8/28) were the anniversaries of his two open heart surgeries. His mitral repair and ablation was 8/27/09 and his big repair, the Rastelli-Senning double switch, was 8/28/07. Can you believe we've been on this journey for over four years?! Seems like 10 sometimes, but other times it feels like just yesterday. We took the family to Connie's favorite place on Saturday, Brunswick Zone. He played skee ball to his little heart's content. Then we went to Grandma and Grandpa George's house for a cookie cake and ice cream. He topped off the fun by watching some DVR'd episodes of Max & Ruby at their house. Saturday was fun, but Sunday was divine-literally. He started the morning at 8am mass where he received the sacrament of Anointing of the Sick (they do it every six months and it just happened to fall on the anniversary this year!). Then we went to the 1st Annual Children's Heart Foundation Heart Walk around Creve Coeur Lake and ran into some of the SLCH staff. Charlotte talked to us about camp next year. It's so unbelievable to me that next summer he'll be old enough to go to heart camp, Camp Rhythm, as a mini-camper. Those events really made the day special and memorable.

Wednesday, July 20, 2011

General Update and Swimming

Just wanted to pop on and tell everyone that Connie is doing well. It's been a little over a month since the last update so I thought I'd pass on a few new things about him.

He is tolerating the heat far better than he ever has in the past. Everytime we're out and about I think to myself how "we couldn't have brought him to this last year" or "how miserable he was last year at this".

We took him on his first "train" ride recently to Union Station via the MetroLink. We ate lunch at the Hard Rock Cafe and fed the fish. He loved it!

July 4th has come and gone and even though the parade was a little rainy, he had fun for most of it. Patience is not his strongest skill and there was a lot of waiting. Waiting for the floats and candy. Waiting for the fireworks to start. This year he was also brave enough for the rides at the carnival AND the fireworks. He was very disappointed that he didn't meet the height requirements for most of the more thrilling rides so I've convinced him that certain foods (fruits and vegetables) will help him grow bigger so that he can ride them soon.

Connie has developed a passion for the water. Last summer he would barely let go of the sides of the pool and never even think about putting his head in the water. This year he is jumping off the side and going under. He can even jump in and swim under water across the pool! His favorite thing to do in the pool is to have Greg throw him in. He's so fun to watch. We went to Raging Rivers earlier in the week and he even did the water slides. His favorite activity there was the giant wave pool.

It seems like summer is already winding down, unfortunately. We got a postcard in the mail from his preschool and he'll be attending on M, W and Th mornings. He's all set with his James (from Thomas the Tank Engine) backpack and he chose a green binder to be his portfolio. We put a Thomas cover on the binder and he's excited to ride the school bus again.

Soccer has kind of come to a stand still. The last two weeks have been cancelled due to the high heat so hopefully it'll cool down here enough soon that he can get back out there. Practices for his fall team at Assumption will likely begin after Aug. 1.

Wednesday, June 15, 2011

First Soccer Game

Connie played in his first game last night. Turns out he was not put on his friend Leyton's team, but he didn't seem to mind. Leyton was playing on the field right behind ours and at one point during the game he turned to Connie while they both sat on their respective benches and said, "You're on the wrong team!" Connie got out there and ran after the ball. During his first attempt, he got knocked down and decided he needed to sit on the bench. I think he most enjoyed drinking from his Thomas the Tank Engine water bottle. He went back in a few more times and even had to take a potty break at half time (because he liked the water bottle so much!). He got a snack afterward and everything was great. Go Orange!

Thursday, June 2, 2011

Last Day of Preschool and Soccer News

Conway attended his last day of preschool for this school year. He and his classmates celebrated by wearing tie-dyed shirts that read, "508 Rocks." He was a pretty sad when he got to school. Not because he was being sentimental, but because he didn't want to change into that shirt. He had worn his beloved bowling shirt today and was not happy about taking it off. I convinced him to leave it on long enough for them to take a class picture and by that time he forgot and wore it the whole morning! He also got to jump in a bouncy house and have a beach themed party time in the classroom. He had a great year. Looking at his portfolio reminds me of just how much he's grown these last 9+ months.

Now that he's off school, he can focus on fun things that he didn't have much time to do during the school year such as visiting the library and aggravating his sister. Story times for his age group fell on mornings when he had preschool so it'll be nice to get back to the library for some activities this summer. And now that he and MK are going to be with each other all day, every day, I'm sure he'll find new and interesting ways to bug her! It's already starting, unfortunately!

The coolest (well, technically probably the hottest as in warmest) new thing he's going to be introduced to this summer is SOCCER! That's right. Our boy is all signed up to play soccer. It's a very recreational league of 4 year old's and it's coached by a friend's dad. This makes me feel better because he'll let Connie sit and rest as much as he wants. Or dig in the dirt, or pretty much whatever the kid is up for. Dr. Bromberg even went so far as to say he thinks it would be a great experience for him to be with his friends and maybe even make some new ones! I am ashamed to admit it, but I have struggled for awhile now with feeling like Connie will never fit in with the other boys if he doesn't play sports. I know it's ridiculous, but I can't help but see the friendships that other kids in catholic schools have because of their unity on the field, in church and in the classroom. That sense of community and togetherness is the main reason we chose Assumption for their school so I have just been worried that if he doesn't play soccer like the other boys going into kindergarten he'll be left out and never accepted or something. Having said all that, he may play one game and hate it. He may get too overheated, or just not be interested or we may deem it too rough for him and just be uncomfortable with the potential risks posed to his pacemaker and wires. And that's okay. It's totally okay. It's not like he's ever going to be an Olympian. In fact, we were told that in our very first conversation with Dr. Bromberg on March 5, 2007. He said that once he had his double switch, he would expect him to live life like any "normal" child, but would not reach the Olympics. He then reminded us how few healthy-hearted athletes attain that level in their sport. We'll for sure be taking some video at his games and post it here. I am not sure, but I think his first game in this summer league is in just about two weeks. I can't believe that two summers ago he was in pretty bad heart failure and now he's running around and dancing like crazy! I don't know why we've been so blessed, but I'm going to continue to give the glory to God and try to stay ever-grateful.

Sunday, May 15, 2011

Heart Walk 2011 and General Updates

It's been a month so I thought we'd post some recent pics and give you a glimpse into the world of Conway Beckemeier. I say that because he's big on spelling his full name right now. He also loves to sing. He sings constantly, especially when I'm on the phone or talking to someone. And at those times he even sings louder. Fun! He sings songs he hears on the radio (JoyFM), songs from church, songs from preschool and songs Mookie plays on the piano. The only thing is he has a tendency to make some errors on the lyrics. We are in stitches nearly every time he's learning a new song. The boy still loves hot sauce on everything. He eats Frank's RedHot on his breakfast sandwich and dips most everything he eats into it. He suddenly has started to LOVE being outside. I think a new swingset may have something to do with that! Even on the hot days we've had the past couple weeks he's wanted to be outside. This is very new for him. We're hopeful that perhaps the improvements in his mitral valve regurgitation and his decreased heart size will help him tolerate the heat a little better this summer. He can climb up the 7' rock wall and climb the rope ladder all by himself. The most impressive change in his development comes in the way of his social skills. I am so surprised and glad to see him initiating interactions and really branching out. I guess it's so different for us because his older sisters are both so painfully shy. At the park he walks up to other kids his age and asks them to play and then plays well with them. At school his teachers report that he and the other boys "clown around" a lot and are very silly and that he's got a pretty decent sense of humor. Out in public he greets people and when he's spoken to, always gives an appropriate reply. He wishes other women 'Happy Mother's Day' on his own. When Mary Kathleen comes home from school he asks her about her day. He's thoughtful and loving (most of the time) and funny and honest. We LOVE his personality!

Yesterday was the heart walk. It was a dreary, chilly day but we had fun seeing everyone in the Heart 2 Heart group and meeting David Atkinson in person. He works with Conway's Uncle Geoff and he participates in the heart walk every year. He asked us if this year he could use Conway's story in his fundraising efforts. He also pledged to personally 50% match what he was able to raise. He ended up raising $16,825 and was the top individual fundraiser for the walk this year. He shared with us that this was the most he's ever raised and he felt Connie's story was a big reason why. He gave Conway his award medal and posed for a picture with him by the Stan Musial statue. We were honored that our son has touched others to be so generous with their gifts, and we hope that those funds will help the American Heart Association further their mission of "Building healthier lives, free of cardiovascular diseases and stroke."
2011 HeartWalk Memorabilia

Conway with David Atkinson of RGA, top individual fundraiser for the American Heart Assoc.'s Walk... raised almost $17,000 by sharing Connie's story with his family and friends.

Connie showing off his red "survivor" hat

Foam heart from Children's Hospital

Connie and Mookie and me standing behind home plate at Busch Stadium

My 6 year old daughter and 96 year old grandmother on Mother's Day

Downtown before Cards Game

Daddy and Connie at the Cardinal game

During a fundraiser for Conway's school called Walk with US

Easter Egg Hunting

Dyeing Eggs

Friday, April 15, 2011

Future Plans???

Just a quick update to tell fans and loved ones what Connie said this morning during mass. During the homily he asked me if, "When I grow up like Fr. Joe can I stand on the steps and talk and the people will listen to me?" Little does he know that since we found out we were having a boy I dreamed of him one day joining the priesthood. He was so cute!

Friday, April 8, 2011

Important Meeting

Conway with the daughter and widow of Dr. Giancarlo Rastelli at St. Louis Children's Hospital 4/6/11

Conway doesn't realize it now, of course, but someday he'll be able to look back at this picture and hear stories about the time that he met Dr. Antonella Rastelli. He's been introduced to far too many doctors in his short life but this one was different. She didn't examine him, poke or prod him. She held him and talked to him and told his mommy all about her father, Dr. Giancarlo Rastelli. You see, her father is a big reason why Conway is alive today and why he's got a great chance at keeping his special heart going strong for the next 75 years. Dr. Gian Rastelli was the heart surgeon whose pioneering work led to the surgical procedure he developed using a conduit to connect the RV and the PA in transposition cases involving pulmonary stenosis (The Rastelli Procedure). The version of the double switch Conway had done in 2007 was called the Rastelli-Senning. Here's a little bit about the life of the great doctor. We were so blessed to be able to hear her speak about him and the kind of man he was. Usually these types of physicians are "untouchables" but he was different. She shared many excerpts from his own letters back to his family in Italy that he wrote during his years conducting research and surgery at the Mayo Clinic. It was fascinating to hear how passionate he was for his work, and how dedicated he was even after a life changing diagnosis of his own. To think of the sacrifices those women made so that he could develop that procedure... it's just mind-boggling!

Monday, March 28, 2011

Cardiology Check-Up

We saw Dr. Bromberg this morning. All is unchanged! We go back in six months and NO SURGERY THIS SUMMER! His narrowing is not any worse than December and there is an advantage to waiting to replace it... the longer we wait, the better chance it could mean less future replacements. Praise God! Now, we just need to storm heaven for my mom, as her new artery is failing in her leg and the doctors are trying to decide what to do next. They sound like they are going to amputate below the knee. Please pray for her.

Thursday, March 24, 2011

Heart Walk

We are thrilled to be walking in this year's Heart Walk to benefit the American Heart Association. The walk takes place on May 14th at Busch Stadium. You can go here to register if you would like to walk with us. We would love you to join us! If you can not walk, but would like to donate to the AHA in hopes that their research and education would continue to improve the lives of those with heart disease (like Connie) or stroke survivors (like my dad), I want to let you know about a neat opportunity we have this year. Conway's Uncle Geoff works for RGA, a company that regularly contributes a large donation to the AHA. One of his co-workers, David Atkinson, also raises $ for AHA and also 50% MATCHES each donation from his own pocket! He asked permission to use Conway as his "poster child" this year and shared his story with family, friends and coworkers. By contributing via David's page, you are turning your contribution into an even larger one! That means $10 becomes $15!! You can click HERE to make a donation.

Thank you! Hope to see you on May 14th.

Monday, March 21, 2011


Thank you to everyone who has been praying for my mother and grandmother. Mom is home and recovering and still has both feet! My grandma is still rehabbing her shoulder, but should come home in a couple of weeks.

Conway spent almost all of his spring break with a fever caused by a mystery "virus." He was swabbed for everything under the sun and all results were negative. Today he had his follow-up on the lazy eye screening and he was negative for that too, thankfully! No lazy eye and no change in eyesight. Still farsighted, but not enough for glasses so we don't go back until December, 2011.

Now just cross your fingers that he doesn't pick up strep from Celeste! Poor girl is on antiobiotics now and hopefully will feel better soon.

Saturday, March 12, 2011

Come on Spring!

Connie's sick. It's one thing after another lately with him. He started with an eye infection two weeks ago, then we had the whole asthma scare last weekend. We're still treating that as his cough persists. Yesterday he took a 4 hour MORNING nap and has been increasingly whiny. Today I was just about to pull my hair out with him only to find him with a temp of 102 after his nap. It did go down some with ibuprofen so cross your fingers and pray that this is quick moving and he gets back to himself soon. Also, my mom is having surgery on Monday and my 96 year old grandma is recovering in a rehab center following a fall that fractured her shoulder. She's in quite a bit of pain too. We're asking for an abundance of God's blessings over these next few days and weeks and have faith that He can deliver!

Saturday, March 5, 2011

Celebrating Life and Tolerating Life

The first part of that title stands for honoring Conway's birthday this past week. On March 3 he turned four years old! Can you believe it? He wore his new bowling shirt to preschool and took bowling ball cupcakes to share with his class. Grandma and Grandpa George took us to Red Robin for dinner and we came back to the house for cake again! I think his favorite part of the day was wearing his shirt and getting a balloon from the restaurant. He just doesn't like for Karsten to play with his balloon!

The latter part of this post title is in reference to the fact that we often are forced so quickly out of the celebration mode and thrown into the reality of everyday life with Connie. On his birthday, he was sent home from school with a report from a vision screening that was performed there saying he needed to be seen by an opthamologist due to having a suspected lazy eye, or amblyopia. This was a shock to us as he has been followed by a phenomenal eye doctor since he was 7 months old, having check ups every six months. We were surprised at this development. We called his eye doctor's office and have a follow-up scheduled for March 21st. They did say that sometimes the screening tool can have a false positive, but that it is usually fairly accurate. Then Thursday night Connie spent most of the night coughing a barky cough. We thought for sure it was croup, as it sounded just like it. He visited Dr. Davis Friday and instead of coming home with a diagnosis of croup, we've now added Asthma to the list, along with three more daily drugs; nebulizer treatments of an inhaled steroid every four hours until he's able to go 48 hours without coughing, an oral steriod twice daily and an allergy tablet! He spent both Thursday and Friday nights awake, scared and struggling to breathe. The only relief we found was a steamy bathroom. Prayers that tonight is peaceful and restful are much appreciated. It's already 9:45 and he's still wide awake (of course that's thanks, in part, to the albuterol he's on) and coughing constantly the second his head hits the pillow. Right now his pediatrician thinks that his asthma is the type that is triggered by a virus and while most kids can shake it after a few days, it seems to linger and linger in asthmatics and they need breathing treatments in order to get over the hump and get better. We've even seen that be the case with Mary Kathleen, but we've never seen any of our children struggle so much for a breath. It was truly scary to witness.

Sometimes around here it kind of seems like the terror alert system that went into place in the US after 9/11. For today we're still doing what we do, just with a heightened sense of angst, alertness and worry. Our family's "threat level" is elevated for the moment. As always, we welcome your prayers and thank God that we're not in the same boat as many of our heart friends and families tonight. This has been a rough winter for many and so many are struggling with illnesses right now. If you have a moment, ask for healing and health for those kiddos too.

Wednesday, February 16, 2011

Happy Heart Day

We just finished out Congenital Heart Defect Awareness Week, Feb. 7-14. We celebrated by making cookie/treat platters with the other Heart 2 Heart parents and kids for the pediatric cardiology offices at Mercy Children's, Cardinal Glennon and St. Louis Children's Hospitals. I was also able to deliver the donations from the very generous moms in my Assumption MOPS group for families at SLCH in the Cardiac Intensive Care Unit.

Since Connie's about as bowling-obsessed as they come, Greg made him some bowling valentine cards to give to his classmates at his party yesterday. Here's a pic of it.

Connie's still doing very well at school. He rides the bus one day a week now and loves it. We had his IEP meeting about a week ago and he has done great with his goals. He will still receive a little PT to work mainly on core strength and speech/language will see him a little more to add some receptive language goals too.

He'll be four years old in just a couple of weeks. It's so hard to believe! I know everyone says that, but there have been times that we weren't certain we'd ever see this day. What a blessing he has been to our lives!

Thursday, January 27, 2011

Miracle Workers

A friend sent me this article about the heart surgeon who pioneered the procedure used during Connie's first surgery, the Double Switch. His Double Switch was not a straight forward one due to his sub pulmonary stenosis (obstruction) so he had to have a Rastelli-Senning. Here's a little glimpse into Dr. Rastelli's life. It would be pretty neat if he were, indeed, cannonized by the catholic church someday.

Have a great day and remember to be grateful!

Wednesday, January 5, 2011

We're home... ALL of us!

Napping right before discharge

Cheesy smile... how we knew he was feeling himself again

Just a bit before the procedure got underway

Weird... I wrote this post yesterday evening but I guess I didn't "publish" it! Here it is:

We were expecting Connie and Greg to be spending the night in the five star resort known as StL Children's, but instead we are all home as Conway was discharged just before 5pm. We are so thankful that everything went off without a hitch. Dr. Balzer explained that he feared that stenting open his conduit would have led to additional pulmonary valve leakage. Basically, we would have been trading one problem for another. In a normal person, the pressures in the right side of the heart are about 1/5 of the left. In Conway, the RV pressure is more like 2/3 of the LV. He feels that surgery is the next step, but there is some room for flexibility on the timing. We certainly don't have to rush into anything, as he "looks pretty good" considering the complexity of his heart. He guesses that it will likely be scheduled for summer 2011 (to avoid the cold and flu season), but that will be up to Drs. Bove and Bromberg. We knew this day would come eventually, we just had hoped that it would be more like when he was 8-10 years old.


I figured when they came for his bed after only 1.5 hours that no stenting was done. That wAs right. Dr. Balzer said Connie is right on the borderline for surgical recommendation. Timing will be up to Drs. Bove and Bromberg but the likelihood is that it will be done this summer. Right now Conway is resting with the help of Precedex but he's woken up twice and been upset. The nurse will turn up his sedation if necessary but she really doesn't want to since he's going home today. He has to lay flat until 4:15 and hopefully get discharge papers soon after that.

Cath Lab

Connie was taken in at 8:30. He was very good. They've already gotten access and things are going smoothly. They expect 2-3 hours. Dr. Balzer said if it doesn't look like stenting will buy us a significant amount of time (2+ years) or that he needs multiple stents then he will just leave him be and refer him for open heart surgery. For now we wait I can't speak for Greg but I have an overwhelming sense of peace about today and am so thankful for that.

Tuesday, January 4, 2011

Pre-Cath Work Up

Connie went to Children's today for his pre cath testing. He will have a cath tomorrow with Dr. Balzer. He was very brave-not the least bit nervous actually. He handles these things like a pro. He requested a lemon-smelling face mask tomorrow for when they "gas" him to sleep and wants to watch Bolt on his iPod while he lays flat for 6 hours after he's done with his "nap!" He amazed everyone there today. The last time any of them saw him he was in heart failure and some there felt that a transplant was his only option. Most of the people we saw today hadn't seen him since April 2008. He still had the NG feeding tube back then! I better get to bed soon since he's first case tomorrow. We will be leaving the house around 6am. Please pray that Connie has no fears before the procedure, that his pain is controlled afterward and that things go smoothly, both heart-wise and emotionally. Pray for the doctor's wisdom and that God will guide his hands. Lord, please bless Conway and let him know you are with him through this procedure. Shine on him and let all those we will meet tomorrow see you in us. In Jesus' name, Amen. If you are on Facebook we will be posting updates throughout the day there.