Multiple Updates

Conway is having a fun summer.  He loves swimming and is quite the little fish.  Poor kid is allergic to most sunscreen but we have found some for sensitive skin that he does well with.  He has become addicted to watching Woody Woodpecker on Netflix.  It is funny to see him enjoy some of the same characters I remember from my childhood.  He attended a three day golf camp earlier this summer and liked it a lot.  A fellow heart mama had some youth clubs she wasn't using anymore and she gave them to him so now he's got something to take out to the driving range or pitch and putt course.   This month he is going to a gymnastics camp for a couple of days and then to the highly anticipated heart camp, Camp Rhythm.  He adores Baby Frances and of all the kids, he is the most loving and gives her the most attention.  And she just lights up when he talks to her.  The only problem is he sometimes needs reminders about being gentle and giving her a little space.  He especially loves to tickle her... when she's eating or sleeping!  He's been reading to her some and she just stares at him and laughs intermittently.  He had a check up at the dentist and no cavities this time!  He was very brave about the x-ray, too.  I think it is so scary for him because it causes a flare up of  PTSD from his early months in patient and all the things that were forced into his mouth. 

We spent a night in Kansas City at the Great Wolf Lodge, an indoor waterpark.  We figured it was ideal considering we have the new baby who shouldn't be out in the sun for long periods and for Connie who tires more easily swimming and might need to nap.  He was the first one "done" swimming both days, but he did very well climbing three flights of stairs numerous times to do the water slides. 

We also enjoyed a recent trip to the Magic House courtesy of the Missouri chapter of the Congenital Heart Foundation.  The heart families had the whole place to ourselves!  Connie loved the vacuum tubes the most.

Yesterday marked three months since his last cardiology check up and pacer interrogation.  We typically have the pacemaker evaluated quarterly via phone transmission so I sent in a carelink report.  The nurse practitioner called to tell me "everything looked good, but..." My heart climbed into my throat and all I could think of was, "Oh, no! We just went through surgery last summer and now this.  I don't want to see him miss out on anything or have anything stand in the way of a smooth start to the school year." She said that this time there is some "noise" or impedance on his atrial lead meaning it is damaged in some way.  It could be from an injury such as a fall, rough housing or repetitive movement, but it is more likely that it is just that the insulation surrounding the wire is wearing down and therefore the lead is less effective and starting to fail.  In Connie's case we are lucky because he does have an underlying rhythm of his own and if this were to happen, he shouldn't just collapse.  Theoretically, his pacer should switch modes and go into atrial sensing, ventricle pacing instead of pacing the atrium and both ventricles, which is what he has currently.  We might notice him having a fixed heart rate around 70, causing him to be rather sluggish and tired.  Dr. Bromberg said that even if the lead did completely fail, we might be able to put off replacing it surgically until he is older, as he has quite a bit of scar tissue on his heart and finding a good place on the atrium to attach a new lead would be a tough job. Conversely, placing a lead venously would compromise his vein, which, as the doctor put it, he will need for another 70-80 years. 

So, we will up our vigilance just a bit while trying to carry on as normally as possible.  I asked about sending reports more frequently or checking his heart rate nightly and was told to not go crazy and just keep doing what we've been doing, which is letting him live like a pretty regular kid.  It is a reminder, though, that he'll never be cured and just when we get out of the routine of being overprotective it seems something comes along that thrusts us back into the reality that he has a pretty messed up heart.  If you would pray that this newest discovery maintains its "let's just keep an eye on this" status, or better yet, clears up by the next transmission, we would really be grateful. 

Last day

Today was the last day of school for Conway and Mary Kathleen.
It was a half day. On this day there is a closing ceremony and the children are called by name to receive awards related to their demonstration throughout the year of their understanding of the goals and criteria of a sacred heart education. Connie's award was for consistently demonstrating enthusiasm for learning. We can hardly believe that 10 months ago our boy had just had open heart surgery and we questioned whether or not he was really ready academically, physically and emotionally for the primary (kindergarten)year.
Here he is today 10 pounds heavier, 4 inches taller and READING! He just brought home a reading end of unit test with an 89%. But get this... it was a FIRST grade, unit two test! We are so thankful for the education he is receiving and are so proud of all that he has accomplished. He really is a walking miracle and a testament to the power of prayer and perseverance.

Mary Kathleen's First Communion

Mookie received her First Holy Communion on April 13th. This was a day she had been looking forward to for years. I remember when she was just a toddler and she'd smell my breath after communion and ask when she was going to be old enough to get it herself. I am confident that she was prepared and fully understood what she was partaking in. Her school does such a wonderful job with sacramental preparation. One thing that made it special was that it was in the Shrine of St. Philippine Duchesne. She also had a special part in the mass. She and some classmates led the congregation in singing the responsorial psalm, "Taste and See", and you could really hear her singing out. The children each processed in with either materials to dress the altar themselves or with wheat, etc. Another really fun thing was that most of the songs chosen for the mass were songs by artists like Chris Tomlin and are played on our local Christian radio station so our family was very familiar with them and MK had a lot of fun singing them. Here are some pics from the special day. Frances' first mass MK with her 2nd class teachers MK with her best friend, Naomi MK with Fr. Sean Martin and Sr. Maureen Glavin (celebrant and Head of School)

Frances Erin Beckemeier is here!

This post is about a week late, but we've had a busy week, as is to be expected when you have a big family! Not only did we have Karsten's birthday, we also had Frances' arrival and then this weekend was Mary Kathleen's first communion. Frances arrived at 5:19 pm on Sunday, April 7th. She weighed 9 lbs 2 oz and was 20.5 inches long. She came out crying and immediately sucking her fingers. She has been a very good baby. I just can't get over how petite and dainty she looks. All the 3-6 mos clothes we bought thinking she'd be almost 11 lbs aren't going to fit her for awhile! We got the call to head into the hospital at about 7am. Labor was started with Cytotec at 9:30 am and contractions began about an hour later. I got to spend some time in the new L & D bathtub and shower. It was amazing how I felt NO contractions while I was in the tub. I got out because I actually thought they had stopped. Then I realized they had not :( Later in the afternoon I was offered an epidural and accepted. However, the epi did nothing other than make my toes a little tingly. I still felt everything. Finally around 4:30 the anesthesia supervisor came in and had to take out the first one and start a second epi. Just about the time it started to kick in, it was time to push. She even made the comment that it wasn't the first epi she'd had to redo that day. The nurse called the doctor and she arrived a short time later. Frances practically slipped out as I was moving down on the bed to get ready to push. On the next contraction she was delivered! One nurse said something about what a good looking boy we had and I got a little freaked out! Then she and the doctor confirmed she was indeed a girl. Phew! Frances was placed on my tummy and had apgar's of 8 and 9. The kids came up for a visit before heading home to get ready for bed. I couldn't get over how excited Conway was to have a new baby sister and to hold her. Grandma and Grandpa George and Grandma Marybelle were the first visitors to see her. The next day she had her hospital photo shoot and her echocardiogram. Conway's cardiologist read her echo and confirmed that her heart is normal. The pediatrician had heard a murmur on the first day of life, but not on the second day, so that was another reassurance for us. Frances wore the same yellow dress home from the hospital that I wore home in 1978. It was a gift from my Grandma O'Leary's friend, Fran Overman. Fran also happened to be a graduate of the school where Connie and Mookie attend and where I work! We've been home six days now and things are going well. She is a very good girl and the noisy house she inhabits doesn't seem to bother her a bit! Thank you for your prayers! I'll post about MK's First Communion soon.

No Joke!

Although today is April Fool's Day, this post is not a joke. It is all true, even though it seems almost unthinkable! Connie had his check up with his cardiologist today. It was a routine visit and six months from the last. He had the works including an echo, pacemaker check and all the regular things they do during an office visit. First bit of news is that Conway is in the 75th percentile for height and weight for his age. Our small fry is growing by leaps and bounds-almost four inches since his surgery last August. Dr. Bromberg was very impressed by his growth (49 lbs and 46.5 inches) and called him a lean, mean machine. He said he looked like a power forward! We then chatted for a moment about Michigan's win yesterday and berth into the Final Four. Go Blue! Connie gave Dr. Bromberg a gift since Saturday was National Doctor's Day. He got a t-shirt that has a heart with a beat in the middle of it and underneath the heart it reads, "Got Rhythm?" (similar to the got milk? ad campaign). He loved it and said he thinks it will be perfect to wear under his scrubs when he does ablations :) Pacemaker checked out fine, showing 3-4 years of battery life left on it and an underlying rhythm in the 30 bpm range. During his echo he requested to watch Calliou on the TV so he did. He is always so cooperative and pleasant while the techs painstakingly search around for requested pictures trying to figure out his complex anatomy. Dr. Bromberg couldn't get the file to transfer from the ultrasound machine to his computer so he came in the room to review it and commented that he'll study it further later when he isn't distracted, but at first glance he looks great. Dr. Bromberg spent some more time with sharing how pleased he was at how everything is going. He mentioned to the echo tech that the mitral valve surgery in 2009 helped him a great deal and that this most recent surgery seems to have gotten him exactly where he needs to be. He is even considering stopping the Enalapril, which would mean that for the first time since Conway was 4 weeks old, he would not have to take a daily heart medication! He also says he can't justify bringing us back in for more testing for a year... A YEAR! The longest Conway has ever gone between cardiology visits is six months (just this past six months, never could make it that long before!). We will still dial in the pacemaker checks every 3 months, but unless we have concerns, there is no need to echo him or listen to him before next spring. I think Connie is a little disappointed, given how close he is to everyone in that office. He's been there so often he actually looks forward to going. He's kind of a little star in their book considering how sick he was and how far he has come. To be honest, I don't mind going frequently as it gives us a great deal of reassurance. However, I realize that a part of healing is moving on from the constant monitoring and living more like a normal kid... one that doesn't have to spend hours and hours in doctors' offices. So, we will try to embrace and enjoy this new path we are on for as long as we are on it. On another positive note, Connie just received his third quarter report card, reflecting a boy that is on target in all areas except PE and handwriting. He just started working with an OT, Mrs. Debbie, who is quite impressed with him already. He lacks some endurance in his upper body and tires when doing small motor tasks so he's been given some chores to do around the house to help him build some muscle. I expect now that the weather is improving he'll be building a lot more strength with all the playing outside. Just the few nice days we've had lately, I have already observed a significant improvement in his stamina and interest in playing outside. He's gaining coordination and balance too, by riding his razor scooter for long periods of time. Who knows? We may even end up attempting to learn to ride a two wheeler by the end of summer! We hope to write another post very soon to announce the birth of Conway's new baby sister. I'm scheduled to be induced on 4/7 if she hasn't come on her own by then.

Six Years

Can you believe it? Our dear boy has reached yet another milestone! He turned six years old today. I thought it was funny that when I posted about it on facebook, his very first nurse who cared for him in the NICU at Mercy (St. John's at the time) commented on how she couldn't believe it had been six years already. Honestly, most days I feel like it has been at least twenty. No matter how hard I try I can't imagine what life was like before he was in it. Here he was just moments after birth, two days before our world as we knew it came crashing down and we were forced to grown in faith in a way we didn't even know we needed. We spent this birthday weekend doing what he loves... bowling and Angry Birds! Friday night we got a hotel room and invited his cousin Liam to spend the night and swim all evening. The boys had a blast being boys. Then on Saturday, we went bowling with cousins and invited family back to the house for cake and ice cream. Our silly boy didn't even touch his cake. He probably would have rather had fire hot cheetos or something along those lines. Greg made him this awesome Angry Birds Star Wars birthday shirt Playing with his new Angry Bird rocket launcher Playing pin the tail on the Angry Bird He said it was his best birthday ever... I think I believe him! 1 John 5:4 For everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.

Cavities and Conferences

We finally got Connie in to have his crown put on the cavity. Turns out, it affected two teeth and the dentist went ahead and filled another tooth on the other side that she had been keeping an eye on which did develop into a cavity. He's now the proud owner of a silver tooth! Just goes to show you what is important to kids! He is beaming with pride over that silver thing and can't wait to show the big sixth grade girls at early arrival tomorrow morning when he returns to school. On the other hand, I am a bit sad that our record of perfect teeth is gone. We were told when he was an infant that he would likely have bad teeth due to all the vomiting he did for 8 solid months and considering the medications he'd been exposed to during hospitalizations. To top it off, his teeth are so squished together in his mouth there are lots of hard to clean places in there. We can't help but be proud, though, of how well he handled it all. He was a little nervous yesterday when he found out he was going today, but only because he thought he was getting x-rays. When I told him no x-rays he was fine. We got there and they said that they don't allow parents back in the room while they are doing a procedure (for cleanings and exams they always have). I was not really even sure what all they were doing to him since Grandma had taken him to the appt. when we learned about the cavity so I wasn't terribly comfortable with the idea. On one hand I was relieved that I wasn't going to have to be the one to try to calm him if he became upset. He had absolutely no issues separating and was back there just under an hour. When they brought me back to see him he was on O2 for five minutes to get all the nitrous out of his system and they said he was a star patient and followed all their directions very well. He even got to pick out two prizes for being so cooperative! Although I was uncomfortable at first about not being in the room I quickly looked at it as I would any other medical procedure. I would never consider asking to be present while Dr. Bove tries to do his job and correct his heart. So why then would a dentist want a parent, who probably would be too emotionally invested (especially being pregnant) anyway, to be in the room while she works?! It all worked out and he got rainbow sherbet for lunch afterward so he was pretty thrilled. Today was also his parent teacher conference. His teacher reported that he is doing very well academically. He seems to learn quickly and retain information, especially his sight words and math. We are working on getting him to use his sight words more in his writing. I notice that he sounds out everything when he writes, even if it is a sight word he already knows. So, applying his knowledge is our new goal. He's constantly reading environmental print. Yesterday we took a trip to Babies 'R Us and when we pulled up in the parking lot he said, "What is baby russ? Oh, I mean, what is babies russ?" It was pretty cute. We've had snow here and the kids had two snow days off of school last week. He really has enjoyed being out in the cold and the snow, which is a relatively new thing for him. He can be out there for hours now, when in the past just a few minutes seemed too much for him. He's especially fond of shoveling. Unfortunately, he uses his kid-sized shovel to move the snow from the pile on the edge of the driveway BACK onto the driveway, by hurling it over his head. Silly boy! He also enjoyed sledding at Westhoff Park until he flew off his sled and burned his face on the frozen snow. He even had scrape marks on his forehead. He couldn't wait to tell Grandma George all about his sledding adventure. It amazes me how he and Mookie went up and down that hill dozens of times and the last time I took them to that park to sled he was so worn out and exhausted I had to carry him up the hill every time. We give God all the glory for how well our Miracle Boy is doing. Can't wait to see what God has planned for his life :)

Erin Heart Update

I saw an electrophysiologist recommended to me by Connie's cardiologist and he diagnosed me with a rhythm disorder called AV Node re-entrant tachycardia. Basically it is a problem caused by being born with two electrical pathways rather than one. It can be contolled with medications, but they are very not conducive to pregnancy or nursing, and have side effects. NOT something I'd like to deal with for the hopefully 50 years of life I have left. There is a procedure called an ablation (you may remember Connie having this back in 2009 in Michigan) that has a 95% cure rate for this type of problem so after the baby is a few months old I will likely have it done as an outpatient. The doctor assures me that my issue is much more straightforward and technically easier to deal with than Conway's. In the mean time, if I go into SVT again there are a few "home remedies" I can try or I can be treated in the ER like last time. He says it shouldn't effect labor or delivery, so that is reassuring. I also had an echo to rule out any structural abnormalities and got the results today. My heart is normal! God is great! Since this SVT scare I was really starting to worry there that all the issues I'd been chalking up to pregnancy (swelling, shortness of breath, etc.) were actually signs of heart failure! Thank you all for praying for me and the baby, and of course Conway. Connieland Update: His headaches have been increasing in frequency the past couple of weeks. Please pray that he be relieved of migraine pain in the future.

Connie's Video Debut

Click here to view. Conway appears 39 seconds in holding his Angry Birds heart valentine... raising awareness and funds for needed heart research at U of M.

SVT

This post is heart related, but not "Conway's heart" related. It seems as though I had an episode of a very fast heart rate, or Supraventricular Tachycardia, yesterday. It started when I was playing catch with my students during afternoon recess. I mentioned to a coworker that I must have overdone it and so I spent the next hour sitting mostly. The heart pounding didn't get any better, and when I stood up or tried to walk across the classroom I felt horrible. After school I went home and called my OB doctor. Her nurse told me to drink some water and lay down for an hour and see if it improved. If it didn't, I was instructed to visit the Women's Evaluation Unit at the hospital where they see pregnant women rather than in the ER. I went in and sure enough, my heart rate was 168. They immediately transferred me to the ER where I was seen right away for an EKG and before I knew it I had a room full of doctors, nurses and techs. I've never had such prompt attention in the ER! We took Conway in once and he ended up being admitted for severe heart failure and they didn't move that quickly! Well, they administered a drug through an IV called Adenocard to try to get my heart back down to a normal sinus rhythm. It didn't work. They doubled the dose to the maximum dose and that did work. The doctor warned me it would feel uncomfortable but oh my! The way the drug made my chest feel almost induced a panic attack. Thankfully it only lasted a short time and it worked on the second dose. I asked what would have happened if that dose hadn't done the trick and they said they would have had to cardiovert me with the shock paddles like you see on TV. So, I feel rather blessed that it didn't have to come to that! They kept me on the monitors for a few hours and ran blood work. All came back normal. My OB ordered a non-stress test to monitor the baby and she looked great. I finally got discharged around 11:30 and made it home shortly after midnight. By then I was so exhausted. Partly due to the fact that it had been a long day, but mostly because my body had experienced the physical strain equivalent to running for six hours. Even my legs and arms were worn out! I joked with friends that maybe now I could put one of those 26.2 stickers on the back of my car that you see marathon runners have! I followed up with my OB today for my regular check up and she would like me to see a cardiologist and ordered an echo to look at my heart. We're hoping to get that done sometime in the next two weeks so she can get the cardiologist's opinion on all of this before my next OB appointment. I've already gotten recommendations from Connie's doctor on who I should try to see. Quick Conway update since it's been awhile: He's doing great heart-wise. We've already had his new pacemaker checked more times since August than he probably had in the previous two years, but all is well with it. He fell one day in gym class and his teacher was concerned that it was on his pacemaker and he was hit in the stomach a time or two during the school day with balls so we sent transmissions each time. He is just getting over a stomach bug (just like most of the country apparently) but other than that, has been very healthy this year. He is going for an OT eval in a couple of weeks to check on fine motor development so we'll keep you posted on what we find out. Please keep in your prayers two other LTGA families. One is a very young mom who could use some mentoring to help her navigate her way through this world of congenital heart disease, but seems to be in denial. The other is a family whose LTGA first grader has been on ECMO (bypass) for 100 days waiting for an angel heart as his is failing. His parents could use some strength for sure during this long journey. God knew the plans for these families before their special children were even born, but it can sure be hard to trust when you are faced with such unknowns.

Fetal Echo

Conway's new baby sister got her heart checked out on 12/27. We are breathing a sigh of relief because we were told she definitely doesn't have anything like what Conway has or any other complex heart issues. She has all 4 chambers, her great arteries are normally aligned, there is no fluid around the heart and her heart rate is normal. However, he couldn't totally rule out a Ventricular Septal Defect, or VSD. Because of the way she was laying, her spine was casting a shadow on her heart and the septum was not totally visible. He's not saying she definitely has one, but he can't say she doesn't either. Best case scenario is it is nothing. Worst case scenario is that she has a 2-3 mm hole in her heart between the bottom two chambers (For comparison's sake, Conway's was 8-10 mm and wasn't his biggest problem!). It could close on its own before birth, after birth or never. We'll just have to wait and see when she's born. That's when we'll have an echo done directly on her rather than trying to view her heart through my abdominal wall, uterine wall and her chest wall. Honestly, we aren't worried in the least. It is in God's hands and we are confident she won't need medical intervention immediately anyway. If she does end up needing surgery or a procedure, we have a fairly decent knowledge base now and know what to do and how to navigate the world of CHD. Christmas has been wonderful and we have had several fun, family celebrations. I promise we'll post some pics soon!

Pulmonology Visit

Greg took Conway to Dr. Spivey this morning. Apparently he'd already gotten his records from his pediatrician and also spoken "at length" to his cardiologist so he had a pretty good picture of his history. Just that fact alone gave me confidence and made me really appreciate the coordination of care that was taking place. After a lung function test which appeared normal, he said that he feels these episodes we are seeing are more like recurrent croup than true asthma. The positive thing about this is that as children grow, so do their airways and they can outgrow this. It is also possible that the numerous intubations have led to some scarring in his airway, leaving him more susceptible to these breathing issues. For now we are treating it pretty much the same as we have been with the addition of a liquid steroid we'll keep on hand for severe episodes in which we are contemplating an ER visit. We'll follow up in 5 months unless things get worse. At this point, giving him a daily medicine seems uneccesary since he only experiences this a handful of times per year. Thank you for praying for wisdom for all involved in his care. It appears to be the best possible scenario and we are truly pleased with how well his physicians worked together to come up with the best plan for him.

Asthma

Conway will be adding a new specialist to his medical profile. On Monday, he has an appointment with a pulmonologist. We've known for some time that he has viral induced asthma, which presented itself as a cough that just wouldn't go away after an illness. Well, within the past four days he has twice spent the wee hours of the morning struggling to breathe. He gets scared and so do we. To hear your five year old tell you he wants to breathe but just can't is possibly one of the most heart-breaking phrases he's ever uttered... right behind telling me he was "actually ready to go home" after he just couldn't bear the chest tube discomfort any longer last August. At the advice of the school nurse and our own gut feeling, I called the cardiologist to get a recommendation for a pulmonary specialist. His cardiac nurse has a son with severe asthma so she knows just how we feel. She even offered to personally call to set up an appt. if "we got any run around" and weren't able to get in for awhile! Luckily we're set up first thing Monday. Since he has to be the one that everything happens to, we also just discovered at a check up that he has a cavity. Since it is on a molar they want to crown it. We've read there are some different schools of thought on treatment so we haven't decided anything yet. He already dislikes the dentist. I can't imagine how he'll be when they inject a needle into his gums! This afternoon I went for my monthly check up on the new baby girl. Everything is right on track. The doctor said today she'll induce me a week early for a couple of reasons. One is that Karsten weighed nearly 11 pounds and he was born a week early. The other is that Mary Kathleen's First Holy Communion is the day before my actual due date. Obviously she's not scheduling it for convenience sake, and there is a very legit reason to get the ball rolling ahead of schedule. I am breathing a sigh of relief to think I won't have to worry about missing out on such a big day for MK. I missed Cece's First Communion because Connie was in the PICU at Mercy in heart failure. So, now there is a very real likelihood that this child will share a birthday with Karsten! Please pray Connie will breathe easy and for God to show us the best treatment path for his asthma and his cavity.

New hobby

It has been quite awhile since our last post so here goes... Conway began piano lessons this evening. He takes lessons from the same teacher MK has been going to for two years. He was scared at first and even started crying before it was time to leave. I think partly he was exhausted from walking around the Botanical Gardens all day on his first elementary school field trip, but he was also nervous that tonight he would have to play in a recital type environment. He came home with a big smile showing off a prize he earned. He's eager to go back next week so I'd say that's a good start! Connie is still loving school and his teacher told me this week he's more active and social now than he has been all year. His skills in many areas are strengthening. He even ties his own shoes now! We put up our Christmas decorations over Thanksgiving break and he was a big help with the tree. He loves to hang ornaments and hear the stories behind each one. He noticed that Karsten doesn't have as many as he does and he felt badly about that-such a sweet big brother. Speaking of big brother, we found out that our new baby is a girl. Conway was the only one really disappointed in that revelation. He had his heart set on naming this baby Peter. Conway spends his free time engaging Karsten in very noisy, all-boy games such as tag, jumping on furniture, "fighting" with hand towels and boxing. His new favorite movie is the Nightmare Before Christmas and he loves to play with his stuffed angry birds. He uses Greg's paper boxes to make large structures in which to place his pig. Then he hurls the birds at the structure, taking delight in it falling! MK plays along designing posters and other props for these games. We continue to be grateful for all your prayers, especially those for his health. His strength and stamina seem to be increasing and so far he's been able to avoid the nasty bugs going around. Specifically, we ask for prayers that he grow in his ability to maintain focus. We also ask for God's help and guidance with Greg's business, for Mary Kathleen-that her worried little mind will quiet enough for her to get adequate sleep and for good health for the new baby. We have an ultrasound tomorrow afternoon and are, of course, a bit nervous about the condition of this child's physical heart. Considering Conway's issues were missed on such an exam, we'll have a more in-depth look with a ped. cardiologist at just the heart within the next few weeks. Stay tuned for ultrasound pics... :)

Cardiology Update

It has been a while since the last post, so there are a few things to update everyone on. First, Conway saw Dr. Bromberg today to check up on his ticker. The report was glowing. His LV function is "brisk" and the RV pressures are completely back to normal. Valve leakage on the mitral, aortic and tricuspid is minimal and not a significant or imminent threat at all. In fact, the doctor said this is the first time he can remember that he couldn't feel Connie's liver (a sign of heart failure that has improved)! He wasn't needing as much power as the pacemaker was supplying so that got turned down to preserved battery life as well. He's happy with his energy level and stamina and sent us on our way until next April. Speaking of April, that is a going to be a big month for us. Mookie will receive her First Holy Communion, Karsten celebrates his third birthday and we will welcome a new addition into the family. I'm a little past 12 weeks along. We hope to find out just after Thanksgiving if it is a boy or a girl. After today's cardio appointment, we stopped by Mercy Eye Center to pick up Conway's new glasses. He still looks super cute, even though we said no to the sport goggles that he was hankering for. His Primary year is 1/8 of the way complete already! He loves school and his teachers. He talks about it a lot and I've even found him playing school at home... something I never dreamed I'd see. It was so cute how he set up math centers and a science lab and he and Mary Kathleen were trying to teach Karsten. He's also taken a new interest in drawing and writing. His handwriting is still pretty rough, but is improving by leaps and bounds just in this short time since the start of school. He walks around the house with a small notepad and pencil asking what he should draw next. He looks like a mini-reporter! We're bracing for cold and flu season. We'll all be getting flu shots soon. He's already had a hint of a cough and needed some breathing treatments. Hopefully his new and improved cardiac function will help him fight off bugs even better. Thank you for continuing to keep our family in your prayers. Conway's prayer warriors are such a blessing to us!

Check Up with the Eye Doctor

Greg took Conway to the eye doctor this afternoon (left at two, got home at 5:30--gotta love that office!). He was an old pro with the eye drops and everything. Turns out, his eyes are better! He got a prescription for weaker-strength glasses. We'll post a pic of him in them once the frames are selected and lenses made. School has been going well. He loves it. He says every morning he wants it to be the weekend, but he loves every minute he's there! He was line leader the first week. Last week he was the globe holder. He's had homework every night and is doing it independently after we give him the directions! He's such a boy! If you turn it into a game, he begs to do more work! It's all in the approach with him. For his sight word practice I've been telling him I'm trying to trick him and every time he reads it I sigh all dramatically as if I'm disappointed I didn't stump him and he laughs hysterically and asks to do them again! So proud of him! He went two full days last week and is going three full days this week to ease him into the rigors of their schedule and all the traveling they do back and forth across campus. So far he's handling it well. Thanks for the continued prayers for healing!

First Post-Op Follow Up

Conway saw Dr. Bromberg this afternoon. I'd like to think he's already grown, but maybe that's just because they didn't make him take off his shoes :) He started off with vitals and a pacemaker interrogation and then the doctor came in. Connie actually fell asleep during the time when the doctor was testing the pacemaker. We are going to send him to school for 1/2 days only the rest of this week at least. It is just a lot for him and very soon after surgery. He's not complaining, but we all think it would be wise to let him ease into full days a little more slowly until he's fully recovered. Next we went down to x-ray. Lungs were clear so we get to decrease the lasix to 1X/day for the next two weeks when we will hopefully be able to stop it altogether. Check out that new pacer!

Dr. Bromberg was happy to hear that his energy level seems back up to where it was pre-surgery. He believes it is a great sign that he's already at that point and we're still less than 3 weeks out. He said that improvement may even take 6-9 months before we see him look more like his classmates. We have to remember that because he's been "tired" for several months and not as active, he's not in tip top condition. It could take some time for him to get stronger and faster. I really am not worried if he never runs up a set of stairs. I am just happy as long as he is not going backwards in energy and stamina! The doctor also looked at his incision where the stitches are poking through in a couple of spots. He thinks it is best to leave them be for now, hoping they'll dissolve and fall off soon. We're just keeping an eye on the area around, that it doesn't get redder or drain. We go back October 1st for another follow-up, including an echo. Hopefully it's smooth sailing until then!

First Day

Connie started his first day of kindergarten (Primary) today at the Academy of the Sacred Heart. On time. With his class! We are flabbergasted that just 15 days ago his little heart was stopped while surgeons worked to make it better. Now he's reached this "normal" childhood milestone on pace with his peers. Today and tomorrow are half days. When I dropped him off in the cafeteria this morning he was a little nervous and seemed on the verge of tears. What happened next couldn't have gone any better. His school nurse walked in and introduced herself and asked him to help her with a special job. That's when I said good-bye and left him in her capable hands. She walked him over to the 8th grade boys who would be in charge of delivering him to his classroom on the other side of campus. She asked him if he would carry something to his teacher for her. He willingly obliged. That little bit of responsibility was enough to take his mind off his nerves and he immediately started jabbering to the big boys. He told them all about Star Wars on the XBox and how he slept in his sister's bottom bunk last night, etc. There are definite advantages to working in your child's school! It was so wonderful to get a full report on the start of his day. When I picked him up and asked him how was his day, he replied, "It was a little bit great!" He was all smiles and can't wait to go back tomorrow. His teacher reported, with a twinkle in her eye, that he had a great first day. To quote his cardiologist, "...and his remarkable story continues." Today marks the beginning of a new journey for Conway's heart. His physical heart has been restored and now is the time for his spiritual heart to grow and be nurtured. We are so blessed that his school is a place where the focus is on training the heart as well as the mind. Here are a few pics from the first day.

Surgery Journey in Pictures and Words

I finally found a few hours to compile photos and reflect on the past couple of months, and put together this album/video of Connie's path to and through his 3rd open heart surgery. Again, we can't thank you enough for your prayers during this time!

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Day 1 at Home

Connie spent the day catching up with his siblings and grandparents he hasn't seen in a week and playing with the toys and games he missed while he was gone. He moves a tiny bit slower than normal and you can tell he's sort of gingerly walking around, but he seems to be almost himself otherwise. He's even a little sweeter. We know from the past that when his heart doesn't feel well he tends to be whinier and generally not as pleasant so we are happy to see that our loving, thoughtful, kind-hearted boy is back. He didn't take any oxycodone at all today or yesterday and all he had today was two doses of motrin and one of tylenol. He has learned how to swallow pills so he's very proud of that fact and seems to prefer that to all the liquid medication he's been forced to endure the past week. Hopefully next time we get his scripts refilled he can switch to pill form. He did take a huge nap (we ALL did, actually... it was so needed!) this afternoon and got a shower. He still has quite a bit of adhesive on his belly, but it hurts him when I rub it with the detatchol so we're leaving it be until he's not so tender. We are so happy to be home and grateful for all the prayers while we were gone. We know God heard them and answered them. Here's a video of him playing tonight on the XBox... simply AMAZING! https://www.youtube.com/watch?v=U2ME9pBvRn4&feature=plcp

We are HOME!

Connie was such a trooper for a slew of testing. He had the normal xray, ekg and echo required for discharge, along with additional echo time and a very long pacer interrogation with a machine that is new to us. It had something to do with optimization and his electrophysiologist at U of M, Dr. Bradley, is one of the few who uses it as an non-invasive method of gaining lots of info on the heart. All reports were glowing and they hope they don't have to see us for about six years! We hopped in the car at 3pm by the time all the official ppwk and prescriptions were ready and headed home. We just arrived and are crashing into bed! Thank you for the prayers!

Post Op Day #5 -AM Update

Sorry for no update last night. Connie wanted me to snuggle with him and he took forever to fall asleep. Then I was pretty tired. Yesterday was just a lay low day. He took a huge nap late in the day and then we took him to the main hospital's cafeteria and outside to eat in the courtyard. He was pretty down after that and asked to go back to the room. On the way back we snooped around a bit in the old hospital, where his previous two surgeries were. We couldn't access most of the 5th floor, but just seeing it and looking down the hallway brought back a flood of memories. And if anyone would ever complain about "life" in the new place, they would just need one look at the old one and they'd quickly count their blessings! Once he got back to his room we started to see his sparkle back in his eyes. He wanted to tickle fight and "box" me with his feet. Basically he kicked while I pretended to punch him. He reluctantly took a shower (he wanted a bath) and got all cleaned up and weighed before climbing back in bed for a movie. He was up late since he took such a long nap. He finally fellasleep sometime after 11:15 or so. Our boy was up bright and early this morning and we visited the playroom for 50 minutes of bowling sets and Wii baseball and bowling. He just ate some dry cereal for breakfast and is back in bed watching Toy Story 3. The plan today is just to hang out and wait to be taken down the hall for discharge studies. Hopefully everything looks good and we can get out of here tomorrow morning.

Post Op Day #4 midday update

connie got his three chest tubes removed just after 10am. He had to abstain from food and drink until after the procedure, but it was worth it. He was rewarded with a jalapeno bagel and chocolate long john! They gave him a little morphine/versed concoction prior to, but it didn't stop the tears and begging them to stop. Hopefully he won't remember. Neither nurse could believe how far in his left pleural tube was. No wonder his back hurt! He watched a movie and then got up to walk to the playroom where he played Wii for about 30 min. and facetimed Mookie, Karsten and Grandma Marybelle. I could tell he was feeling better already because his pace playing the games was faster and he was even talking some to others in the playroom. He asked to go back to his room and lay down so we did. He ordered chili with jalapenos (Dad went to Subway to get him some peppers!) and jello and a gatorade. Now he's watching a movie and will probably nap soon. He hasn't had any oxycodone all day! He's alternating tylenol and Motrin. Tomorrow he will undergo all of the necessary tests and if they all check out, he will be discharged shortly after. He has no more lines in him and is only on the monitors. Aside from pain control meds, he's on enalapril (like pre-surgery), meds to help his belly move things along, and oral lasix. He's already at his dry weight, but they want to make sure he doesn't puff up now that he's off IV diuretics. Thanks for keeping him in your prayers. They are being answered!

Post Op Day 3 -PM Update

Bottom line from today is our boy is growing weary of everything and is brought to the verge of tears even trying to answer a question about what he wants for dinner. Greg came back this afternoon after napping and said the same thing I had been thinking all day. Connie seems defeated, depressed and broken. He stares, doesn't answer and doesn't initiate conversations. The first thing out of his mouth after he woke up was, "I think I actually want to go home." As soon as he was told it would be a little longer he just gave up. Don't get me wrong. He's stronger than we can even believe. He's taking his medicine, blowing in his spirometer more times than asked and battling through the pain to take long walks to the playroom. Unfortunately, he realizes it hurts to play the Wii so he doesn't really want to go anymore. He was given permission to leave the floor so we thought he'd like the 8th floor playroom called the Michigan Gameday Experience. It was closed for the weekend. Later we thought he might like the ball thingy on the third floor like the one at SLCH he likes and it was shut off for the weekend. We tried the gift shop, hoping something would brighten his spirits and nothing. They had no bowling related toys and he said he didn't want anything else. We struck out with the chest tubes too. They said they had to stay. The frustrating part of these is that no two nurses or techs read the output the same way. Basically, the charting is off and while the night Nurse Practitioners from the cardiac surgery service tell us they are pulling them the next morning, the day NP goes by the numbers on the chart which don't add up! For example, tonight's nurse said that she is showing less total output than the day nurse got. How could blood in the collectors go down!? It isn't like we're pouring it back in him! Good news is his pain seemed more bearable today, or at least he didn't complain nearly as much. He also ate much better than he had up to this point. He had a BM thanks to miralax, colace and an enema :(. He was so good for all of that! Here is a video of him walking for the third time today. https://www.youtube.com/watch?v=6OhWrNju3SE&feature=youtube_gdata_player

Pretty Good Night

Connie was able to sleep from 10p-4a pretty solidly and then got up and around using the potty and playing with his tabletop bowling comfortably. No extra doses of medication were required. He visited the playroom for twenty minutes this morning but asked to come back to his room for medicine because his "belly hurts" (chest tubes). He's been NPO since 4 am in case they decide they are pulling tubes, but hasn't asked to eat or drink anything anyway. They say having tubes makes you not want to eat because of the discomfort. He got his oxycodone/ibuprofen about 40 min. ago and is back to sleep. Hopefully we hear in the next 30 min. what the plan is for the day.