Sunday, December 30, 2012
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!
Posted by Erin Beckemeier at 12:02 AM
Monday, December 17, 2012
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.
Posted by Erin Beckemeier at 3:34 PM
Thursday, December 13, 2012
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.
Posted by Erin Beckemeier at 8:13 PM
Thursday, November 29, 2012
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... :)
Posted by Erin Beckemeier at 10:19 PM
Monday, October 1, 2012
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!
Posted by Erin Beckemeier at 8:11 PM
Monday, September 10, 2012
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!
Posted by Erin Beckemeier at 8:44 PM
Monday, August 27, 2012
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!
Posted by Erin Beckemeier at 9:22 PM
Thursday, August 23, 2012
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.
Posted by Erin Beckemeier at 1:00 PM
Saturday, August 18, 2012
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!
Posted by Erin Beckemeier at 1:06 AM
Tuesday, August 14, 2012
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
Posted by Erin Beckemeier at 10:17 PM
Monday, August 13, 2012
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!
Posted by Erin Beckemeier at 11:06 PM
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.
Posted by Erin Beckemeier at 8:22 AM
Sunday, August 12, 2012
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!
Posted by Erin Beckemeier at 2:01 PM
Saturday, August 11, 2012
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
Posted by Erin Beckemeier at 10:05 PM
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.
Posted by Erin Beckemeier at 8:42 AM
Friday, August 10, 2012
I have to keep reminding myself of the title of this post. This is only two days since he had major open heart surgery. Merely the fact that he's breathing on his own and still alive is reason to celebrate and give honor and glory to God. That said, it has been another tough day for our fighter. He has lots of pain from the chest tubes. The last hour or so before his next dose is due is just excruciating for him. To make things worse, that's about the exact time the lasix kicks in and forces him up to the bathroom (the kid won't use the urinal, he insists on going in the potty). Moving around with chest tubes is way worse than the zipper scar incision on his chest they all say. He was transferred to the floor and is much closer to the playroom. His excitement about that led him back for a brief 20 minute visit in the afternoon but he was in such pain that I had to carry him back to the room. He's pretty much been in bed since other than a couple of trips to the bathroom. Just before shift change, the nurse practitioner who is in charge of his care while on the floor broke the news that one chest tube has put out too much today to be pulled tomorrow. My heart broke. I offered to go get him some french fries and buffalo sauce so that I could fall apart away from him. I told him that he would have pain after surgery but if he told us, we would give him medicine to help and I just feel like we have let him down. I called my mom and vented and cried and when I came back, shift change was happening and the night nurse practitioner came in to evaluate the chest tube drainage because she thought the numbers didn't add up. She discovered that the tech (nursing student) had totally miscalculated. My boy was going to have to endure 24 more hours of hell because someone's math skills were poor! The N.P. brought the tech in to teach her how to read them and re-entered the correct numbers in the computer. His mediastinal tube is still a little borderline, but almost all of it was from last night's overnight shift which was the first time he had gotten out of bed at all, so of course it dumped quite a bit. Even with vigorous Wii boxing earlier today, he's had virtually nothing from it, so she said as long as it continues like that, she'll pull them tomorrow. If he, for some reason, dumps a large amount tonight, of course that plan is shot, but I'm going to try to think positively and see this as answered prayers. My mom said after she got off the phone with me when I was so upset that she and Mookie and my dad all prayed that his tubes would quit draining and be able to come out. Please storm heaven tonight that his tubes are indeed done draining so that he can breathe fully and have some relief tomorrow. We're told he'll be a different boy and we just want his suffering to end. They also plan to give PRN doses of morphine as needed. We wanted to avoid the itching, but it is the lesser of two evils so at this point, we're going for it. They think with him not being on a morhpine drip, it won't be as bad. Dear Heavenly Father, Please allow Connie to rest tonight and get some relief from his belly pain. Help us find ways to comfort him and distract him when he asks to go home. Please cover him with your mercy. We know his sufferings don't even compare to Jesus', but we bring these requests to you believing your words: "Therefore I say to you, all things for which you pray and ask, believe that you have received them, and they will be granted you." In Jesus' name, Amen
Posted by Erin Beckemeier at 10:13 PM
Good news and bad news. Good news is that he is technically floor status. While there are no floor beds available and he has to stay in his ICU room, he will be allowed a bit more freedom. The great part about this is he doesn't have to share his nurse! The team is pleased with his progress, and planned to pull all his chest tubes today, but felt that since he didn't walk around enough yesterday they want to make really sure that there are no pockets of fluid hiding in there that need to still drain. That's the bummer part. It's harder and less comfortable to move around with the tubes, but you need to move around in order to get the fluid out. This morning's chest xray was still showing a diminished left lung. We're hoping he'll prove that he can walk a lap or two around on the 10th floor. If he can do that, his nurse has been given permission to take him upstairs to the 11th floor playroom. Part of me wants to tell his this is the deal to motivate him, but I also feel like it's not fair to even mention the "promised land" to him if he just isn't ready to move that much. What's the sense in taking him there if he can't do anything yet? After he wakes up more, we'll try to get some breakfast in him and get him up and around some. Then tomorrow they will withhold food and pull all three chest tubes and his IJ line in his neck. That's his only IV access right now and it is bothering him quite a bit. As his nurse put it, he itched away his other two lines yesterday in the backs of his hands. Since it's his IV line right now and he's on IV meds they won't take it just yet. He may have to get another poke tomorrow, but hopefully he can just be switched to some oral lasix. It's less effective, but considering he's outputting more than he's inputting, it's okay. Specific prayer requests for today include pain management and mobility. We ask God to keep his pain tolerable so that he will be motivated to move around and get rid of any fluid accumulating around his heart. We also ask that his spirits be lifted by being able to move around more and have some fun instead of laying in bed today. Please ask God to heal his lungs completely.
Posted by Erin Beckemeier at 7:07 AM
Since I didn't post a detailed update last night, I'll quickly recap his day from Thursday. It was rough. Once the Dex was turned off by 11am, he was restless and discontent most of the time. Connie suffered terrible itching from the morphine and benadryl was of little help. By evening, we were able to switch him over to all oral pain medications but his poor face is red and swollen. Between the itching and pain from his chest tubes (although he's blaming the pacemaker), he had a miserable day. Coupling his already whiny nature with narcotics made his insistence on going to the playroom an absolute obsession. Each time he woke suddenly he asked to go to the playroom and then broke down sobbing when we had to remind him that he couldn't go just yet. Playroom is on the 11th floor, where he'll go hopefully today. When we toured before surgery they showed it to him and told him they have a wii in there along with bowling sets to play with. The child life specialist even tried to bring a bowling set to his room yesterday and it just didn't cut it. We brought several sets from home and finally around dinner time got him to agree to play with one for a bit. This stubborn boy just has it in his head that he has to get there! Overnight his nurse reports that he slept in three hour shifts and got up to use the rest room a couple of times. As soon as I arrived this AM he got up and walked over to the potty again. You can tell the chest tubes are really hurting when he does that much movement because he's holding his breath. We've ordered breakfast and are waiting on the doctors to round soon. Will update shortly with the plan for the day.
Posted by Erin Beckemeier at 6:31 AM
Thursday, August 9, 2012
Connie is not quite ready to go as fast as some might like. We have about an hour or so to go until they turn off Dex completely. He has had some issues with suddenly waking up upset so the nurse just gave him a PRN dose of morphine. The doctor came in and said his lungs are a bit collapsed, especially on the left side. We really need to get him sitting up some today and coughing, blowing bubbles, and beating on his back to get him to open up those lungs. The nurse said it is likely that his chest tubes are what are causing so much discomfort so the more he sits up and moves some, the faster they will finish draining and be able to come out (though not today, for sure). All this is okay, though, because as we learned once before, it's all in God's timing anyway. There isn't even a bed on the regular floor available to him right now, so staying put in the ICU seems like a fine plan!
Posted by Erin Beckemeier at 9:12 AM
Conway's night in the PCTU (ICU) was unremarkable. He slept very well thanks to the sedative drip he's still on. His nurse came in every two hours to check on him and his machines only alerted a time or two. At 5 am they came in to X-Ray and weigh him and that did not go well. I excused myself from the room for the x-ray and when he woke up suddenly he was bombarded with four or five strange faces jostling him around. He couldn't find me and became very scared and cried. I reassured him from the hallway but then his cry turned into a pain cry. He said his belly hurt and was indicating the area where his pacemaker incision is. By the time the nurse got back with a PRN dose of pain meds he was back to sleep and calm. That was 2.5 hours ago and he's still sleeping peacefully! He's had a little itching from the morphine, but they can give him benedryl if he continues. Doctors have already rounded for the morning and the plan for the day is as follows: 1) Wean the Dex (sedative) down, first to .3, then off. 2) Advance his diet as tolerated (he's had nothing to eat or drink since Tuesday) and he was a bit nauseated yesterday after extubation so we need to be very careful here. We'll start with clear fluids like water and apple juice. Once he proves he can tolerate that he'll be allowed some crackers. If that goes well, he may order off the menu. 3) Control pain. He needs to be switched over to oral pain meds so they are going to introduce oxycodone once he can eat something. 4) He will keep his chest tubes today, but they do plan to remove the foley catheter and his arterial line. They haven't ruled out giving him some more blood product so they are going to draw another venous blood gas to check his levels before taking that line out. 5) He will be able to ambulate today, meaning he may move around. 6) Possibly move to the general care floor. This is dependent on coming off the dex drip. It wouldn't be until very late today if it happens at all. Otherwise, they plan to move him tomorrow. Dear God, We thank you for the healing and progress we've seen thus far in Connie's recovery. Please continue to guide those charged with his care. We ask specifically today that his pain be well controlled and that he tolerate the changes being made. We also ask that you take away any nausea or ill effects from yesterday's anesthesia so that he may eat and drink comfortably. Please allow him to find some joy in the comforts of home that we brought along such as his bowling toys and books and monkeys. In Jesus' name we pray, Amen
Posted by Erin Beckemeier at 7:01 AM
Wednesday, August 8, 2012
Things have settled down since he was extubated at 6pm. The breathing tube is out and he is breathing on his own. He was on 2L O2 but they were weaning him down after a successful blood gas. Prior to extubation he really struggled with staying calm and stable. He was thrashing about and trying to pull the tube out himself. It is so heartbreaking to see tears streaming out of his eyes and him grimacing and trying to cry with no sound coming out. Thankfully he was given versed and they added a sedative drip so he might not remember that part. He's just at an age where he knows enough to be scared of the tube but can't be talked into just relaxing and forgetting about it. He did not require breathing treatments after extubation like he has in the past so that is another positive. His bleeding has slowed down. There was concern right after he came out of the O.R. about blood in his urine. It was quite a lot which can indicate kidney damage from the heart lung machine. They say if it goes away quickly after surgery it usually means no long term kidney damage was sustained. His urine has returned to normal. They started to wean down his sedative after extubation, but decided to leave it on tonight to let him rest and wake up more tomorrow when he'll hopefully get some lines out. He woke up once a few minutes ago and in his hoarse little voice he said he was going to throw up. He gagged a little and then went back to sleep. They won't give anything for nausea until they actually throw up :(
Posted by Erin Beckemeier at 7:27 PM
Dr. Bove just left us and said he's very pleased with how things went. He expects him to fly through recovery and feel much better now that the pressure load is off that valve. He used a 23mm human donor valve and pulmonary artery. Bypass time was 2 hours and his heart was stopped for 49 minutes. Tricuspid valve leakage went from severe to mild just from the new conduit! He still has mild aortic and mitral leakage, but his function is excellent and heart looks great. He was really thrilled with what little trouble they had getting back in. He said the sheet of goretex he placed over the heart last time (and again this time) probably cut an hour off the case. We are going to grab a bite and then see him at 2pm EST. his plan is to extubate today, as long as bleeding and pain are well controlled. He has three chest tube drains.
Posted by Erin Beckemeier at 11:35 AM
Dr. Bradley just came to report on his portion of the procedure right before Kim came to update on the rest. Dr. Bradley said things are great with the pacemaker. The battery is quirte a bit larger, unfortunately. Also, bi-v pacers don't last as long. He estimates six years for this new one. Good news is his RV lead was using very little output and after the new LV lead got moved to a second site, they got a lot more efficiency from that spot as well. He said it was a good call to switch him, as the new pm gave his blood pressure about a ten point bump. He said his heart is going to really like having that extra squeeze. Kim said he's off bypass and all they have left to do is close him up. She estimates we'll see Dr. Bove in about 30 minutes and then be able to see Connie about 1.5 hours later. Thank you, God, for blessing his doctors with such skill and knowledge. We trust that you will continue to be with Connie during his recovery.
Posted by Erin Beckemeier at 10:59 AM
Kim came in shortly after 11 to tell us that things are still going well and he's on very little medication, or pressure support. The new conduit and valve were in and they were confirming good lead placement. They were trying to wean him off bypass and Dr. Bradley was fooling with the new pacemaker settings. She estimated she'd be back after 12 and we'd be seeing Dr. Bove shortly thereafter. Dr. Bradley had good news! He said that once Medtronic was "done" with his pacer, they may mail it to us.
Posted by Erin Beckemeier at 10:41 AM
The nurse practitioner, Kim, just came by about 15 min. ago with the first update. Our internet connection has been sketchy so far this morning so there may be some delays. We are able to post FB updates on the phone though because we are lucky enough to have Verizon service and they have a tower in the hospital! The old conduit is out. Dr. Bove is getting ready to put the new, VALVED conduit in. Yes, he is for sure getting the new valve along with the conduit this time. He would have had to make his pulmonary valve even smaller if he repaired it, which would have created a problem with the new, larger conduit. He's been on bypass for about an hour so far (went on at 9:40 am EST). We should get our next update around 11am EST. He won't be allowed to keep his old pacemaker. She said the biomedical companies prohibit that practice. We thought he'd be able to take it to school to show it off, but I guess not! Oh, and Dr. Bove said he'd likely be out of school about a month. He said that's kind of conservative, but he'd be concerned about him carrying around his backpack and things. I told him how we were hoping that he'd get as much time to bond with his new classmates in Primary as possible and he recognized the social emotional aspect and how important it is, so we'll just have to see.
Posted by Erin Beckemeier at 9:40 AM
Conway has been in the O.R. since 7:30 am EST. I was able to gown up and go back with him and stay with him until he fell asleep. That was his biggest fear, that we would leave him. We are so grateful for the anesthesia team for letting this happen. Connie was crying a bit when they put the mask on his face, but after singing our ABC's all together, he was out. There was some issue with the consent form since it didn't say specifically he was getting a new valve. Dr. Bove came up to the waiting area and spent about 20 minutes going over the procedure again and his reason why he may go ahead and replace it along with the conduit. He is using an adult sized conduit, which may prove tricky to attach to his native valve. The fiddling with the connection might actually cause his already leaky valve to leak worse. This will likely give him a better outcome from this surgery. Also, future valve replacements could be made easier by having a uniformly sized and shaped valved conduit already in place. He said there is no reason why he couldn't get a melody valve (via catheter) in the future. He may need to take a baby aspirin daily for the rest of his life. We should be getting updates approximately hourly. Thank you for praying alongside us today.
Posted by Erin Beckemeier at 7:37 AM
Tuesday, August 7, 2012
Connie and I arrived in Detroit after a very fast flight and Greg picked us up and we drove to Ann Arbor. We were able to check in early to our hotel room and lay down for a little rest (although no one slept!). We drove to a nearby park to spend a little time on the playground and look at the ducks and geese in the Huron River. Conway wanted sherbet so we went to Baskin Robbins where he ordered the wreckless sherbet. After finishing that cone he asked to try the rainbow sherbet. Ice cream for dinner seemed prudent for a very brave boy on the eve of his surgery. Now he's snacking on popcorn and raspberries! We'll check out some Olympic coverage tonight and try to get some sleep before we have to report to the hospital tomorrow morning at 6:15 EST. Please say an extra prayer for him, that he'll remain calm beforehand and that all involved in his care will use their talents and gifts to do their very best for him.
Posted by Erin Beckemeier at 5:46 PM
Friday, August 3, 2012
We made a very unwanted office visit yesterday. I would rather put him in a lion's cage than take him into a germy doctor's office six days before open heart surgery, but after posting a picture of his mosquito bite on Facebook, my nurse and doctor friends convinced me to get it looked at. It was pussy and blistery and oozing and just not looking good. We've been in before for this reaction to bug bites and always just get some antibiotic ointment to rub on it a few times a day. I was sure that was all it needed, but it was looking worse and not better so, begrudgingly, I took him in. The office staff were nice enough to take him in through isolation. Basically we went in a delivery entrance and straight to an exam room. We were able to avoid both the well child and sick child waiting rooms! He also wore a mask the entire time, which I was lucky enough to get my hands on when I was at SLCH for a meeting Wednesday evening. Pediatric masks are not easy to find. The doctor looked at it and said it was not infected and to just continue with the ointment. Phew! Today is a different story. He has been complaining of a severe headache since lunch. Pray it's just a migraine! We fly out Tuesday for surgery at 7:00am Eastern on Wednesday.
Posted by Erin Beckemeier at 12:21 PM
Friday, July 20, 2012
... It's the title of a Jason Gray song that Connie likes to sing. It's also quite fitting to describe just some of the memories captured on film for him this week at Camp Rhythm. He made new friends. He learned he's not alone. He sweated in 105 degree heat. He swam like a fish. He went fishing. He got to eat dessert first. He got to get dirty. He got to be a regular little boy. Enjoy the video below.
Posted by Erin Beckemeier at 11:05 PM
Tuesday, July 17, 2012
The time has come. Connie is finally old enough to attend Camp Rhythm, a camp for kids who have had open heart surgery. From ages 5-8 children can attend day camp or "mini camp", after that it is an overnight camp located 40 minutes from our house. We are so blessed that he is able to attend after all. It is kind of one of those silver linings of the surgery being postponed. Less than 12 hours from now he will be making friends with 19 other little kids who have been through similar struggles and share the same strength and courageous attitude we see in him. I have witnessed adolescents who have attended this camp for years and seen the bonds that tie and lifelong friendships they form and I am excited for Conway to have that same opportunity. He already knows a few heart friends, some of which will be attending too. There are other heart kiddos we follow online, and over the past six months he has really become interested in them as well, probably because these kiddos have had a lot going on health-wise recently and we've prayed for them often. He is especially fond of Keian and Tim. He is really bummed that these boys live far away and won't be at camp. I'm crossing my fingers that one day we will have a reunion for all the L-TGA families we've grown to love these past five years and these kids and parents can meet. We've cried, celebrated and prayed for these kids during the ups and downs of this disease. Tomorrow, our heart family will grow just a little bigger as we meet new families and children on this journey. Conway is packed and ready to go. He says he's a little excited and a little nervous. I bet after the first ten minutes the nerves go away! By the way, he is all better, finally! Thank you for praying.
Posted by Erin Beckemeier at 10:40 PM
Saturday, July 14, 2012
After our day of disappointment, travel and recuperation we are ready to get the ball rolling on plans to get back to Ann Arbor next month. Greg's contact at our hotel said that unfortunately, the UAW is hosting their national convention in A2 that week and getting a room anywhere in town will be next to impossible. They can not offer us the same amount of nights we had remaining, but they did have a late cancellation for four nights, so we know we've got a place to stay through the night of August 10th. We will hope that by that time he is well enough to be floor status, at which time we can both be with him overnight. We may try to get a room at the Med Inn for the 11th through discharge, but I honestly don't know if I can handle stepping foot in there. It just holds so many traumatic memories. We had purchased tickets for Connie and I to fly home in time for heart camp next week, but since things have changed, and since he's growing rather weary of another long car trip, we decided to see if we could change our flights to August 7th and have Greg meet us at the airport in Detroit and drive us to A2. I think it will help his spirits some and keep him out of rest stop bathrooms and hopefully well enough to go through with the surgery next time. Thankfully, it only cost $26 total to make the switch. We got lucky there. On the health front, he hasn't vomited anymore since yesterday evening, but he did have two accidents overnight. He's such a big boy, he even got himself changed and cleaned up. Thank you for your continued prayers. We know that the peace we feel is a direct result of so many lifting us up.
Posted by Erin Beckemeier at 11:22 AM
Friday, July 13, 2012
We rolled into the driveway just after 7:00 to be reunited with the other kiddos. Karsten was so cute. He did really well while we were gone... like it didn't even phase him. He said hello to his brother and then went on about his business. Connie's loose stools improved drastically and he kept everything down most of the way home. Just this side of Springfield he vomited again. I think he started taking in more than a small sip and that triggered it. All the pedialyte and crackers came up. I was a little concerned we might end up needing to get him on some IV fluids, but he's urinated a few times and his eyes aren't sunken in. We'll.call the ped in the morning if he struggles again after breakfast. Looks like heart camp is going to be a reality now and he'll have more time for summer. I also like that the new date is on a Wednesday. I wasn't too crazy about major surgery just before the weekend when staffing seems pared down a bit.
Posted by Erin Beckemeier at 9:47 PM
That's the new date. We do have the benefit of it falling within the 30 day window so as long as Kim can wrestle his blood work papers away from the people in the PACU, we can forgo more pre-op testing next month and just show up on surgery day. Pray for health! We are heading home today, even though we have all three started having GI issues. He wants to go home, so to home we go!
Posted by Erin Beckemeier at 9:48 AM
Never thought I'd be thrilled that my child is sick, but I am thrilled that he is sick in the hotel rather than sick trying to recover from major open heart surgery. He is continuing to dry heave/vomit and just had a bout of diarrhea even! Dr. Bove must have a sixth sense! What a blessing that he felt uneasy in moving forward! We returned to the hotel to discover a gift had been left for him at the front desk. It was a present from Con-way Freight across the street. Here he is opening it.
Posted by Erin Beckemeier at 9:11 AM
Conway threw up again before bed and the apple juice from very early morning. We were told to bring him in and they'd reassess. We got there and told the nurse who didn't seem overly concerned and said it would be anesthesia's call. The fellow and another doctor came in and heard all about it and didn't see any reson not to proceed. He has no temp, sign of infection or any other systemic issue. His labs from yesterday were normal and show no elevated counts or problems with electrolytes. They paged Dr. Bove to fill him in and he feels it is unsafe to proceed at this time. Greg is ecstatic and relieved. I can't help but be disappointed. Of course I don't want him to go through a risky "elective" surgery if he is compromised in any way, and in my head I know that this is a blessing in disguise and today just wasn't the right day for this. But my heart is sure heavy, knowing we'll have to do this all over again, only now it being more likely that he'll have to start kindergarten late and all that goes along with the travel details, etc. I have a new job this school year, too, and am pretty nervous at the prospect of needing time off before I start! I know his safety is number one, but these are real concerns that I can't help but worry about. He was so disappointed he wasn't getting his heart fixed today, and Dr. Bradley even came by to visit, not knowing it was off. We joked that this was the second time Connie's invited him to the dance and stood him up. The last time was in the cath lab in '09 when he attempted an ablation for the first time. Now we wait to hear from his schedulers, but they advised us to go back to St. Louis. We were told we'd know more by 11am about when he can be put on Dr. Bove's schedule. He was very sorry. I feel bad for him, but sure respect him for making such a difficult decision.
Posted by Erin Beckemeier at 6:53 AM
Thursday, July 12, 2012
Left the hospital at quarter to five and Connie took a very long nap. Just after he woke up and got dressed to go to the pool, the phone rang and it was the cardiologist we saw today. She said plans have changed and after further review of today's echo, they want to replace a valve as well. They are looking to use a donor cadaver valve in place of his native pulmonary valve, along with the new conduit. This is a disappointing development, as it means he will now need valve replacements in the future. The average valve lasts 10-15 years, but that's what conduits are supposed to last as well and here we are just five years later. Oh, and he threw up again tonight after another headache. He doesn't have a fever and says it was a migraine. Hospital seems okay with the news. After welling up for just a moment while I was on the phone with the doctor, I have given it to God and trust that He knew about this even before Connie was conceived. Also, Dr. Bromberg reminded me that we are one of the best places in the world and if their collective, brilliant minds think this is what is best for our boy, then so be it. Please keep praying. We are at peace.
Posted by Erin Beckemeier at 8:36 PM
We opted to eat breakfast in the little Subway cafeteria in the hospital prior to the start of our appointments today. Right away he went down for x-ray and did a marvelous job. He was an old pro! Then back up to the coordinated care section of the heart center. There he got a visit from Rachel, a child life specialist. She talked to him and gave him a few cool toys he could play with while waiting for his tests today. He even got to keep the toys! He told her how much he likes bowling and that he went to Bel-Mark Lanes yesterday.
Posted by Erin Beckemeier at 4:48 PM
Wednesday, July 11, 2012
Today we had the whole day to do fun things around town to try and take our minds off of what is to come. The plan was to go to the beach/splashground in the morning and bowling in the afternoon. We slept in (we needed it!) and didn't get going until close to lunch time! He was dying to bowl so we went to Bel-Mark lanes first. He bowled three games and had a grilled cheese sandwich and milk. Then we went back to the hotel to grab our suits and head to Independence Lake. We got there, but on the way he said he had a terrible headache and was almost crying. He said it felt like a migraine. Sure enough, he threw up. We turned around and went back to the hotel and he threw up again before taking a very long nap. At dinner time, he woke up and decided to rally! We went to the Cottage Inn for dinner where Greg had what he said was the best pizza he's ever eaten. We walked next door for gelato. Connie loved the lemon blueberry flavor. We decided it was just like in the book Olivia Goes to Venice. A few blocks away was Pinball Pete's. Talk about a fun arcade! Connie got his fill of skee ball, air hockey and pinball.
Posted by Erin Beckemeier at 9:04 PM
Tuesday, July 10, 2012
We made the trip up to Ann Arbor in about 8 hours today. Only two stops and no traffic. Thank you for all the prayers for safe travel. We did happen upon two accidents that we narrowly missed. One was a large object that went through someone's windshield, and another was an overturned semi on an off ramp moments after we exited. Here he is posing in front of the Con-way Freight headquarters located across the highway from our hotel. How cool to have a building named after you!
Posted by Erin Beckemeier at 8:15 PM
Saturday, July 7, 2012
We are now six days out from surgery and just three days from leaving town to head up to Michigan. We have been busy preparing for this trip and are pretty well ready to go. Here's what we've been up to: He knows why we are going to Michigan. He knows he's having heart surgery. We didn't go into a lot of detail, but basically have answered any and every question he's had about it. He wants to talk about it every day, seems to be looking forward to the trip and tells friends, family and neighbors the date and what he's having done, etc. He is most concerned that we will leave him. I have reassured him over and over that the only time we can't be with him is when he's in the O.R. and that's because the doctors and nurses are the only ones that need to be in there in order to keep it clean and safe. I told him Dr. Bove will be in there with him when we can't be, and that he'll be asleep the whole time. He is also worried his surgery is going to hurt. I explained that he'll be asleep for the whole surgery and won't feel anything, and that when he wakes up, if something is sore he can let us know and we can give him medicine to help with the pain. He has been saying he just doesn't understand how they get the heart open and he wonders what it will look like when it is open. I have hesitated to use the word cut because I don't want to scare him. I happened to see a hospital in Florida that recently did a live feed of a little girl's heart surgery and posted updates and pictures on their blog. I asked him if he wanted to see what a heart looked like during surgery and he said yes. I showed him the blog and he wasn't bothered by it, but also didn't want to look at it for very long. His other big concern seems to be "tubes". I think by this he means IV's and the ventilator. I don't even think he knows about or remembers chest tubes, which I've been told are the most painful part of recovery. We are praying that by the time the sedatives are lifted, he will already be extubated and we won't have to worry about him fighting the vent. He has been awfully cute with some things he's said lately. He was pretty restless in church last Sunday and Greg was kind of trapping him between his leg and the pew in front of us. Connie loudly proclaimed, "Dad, Stop! You're hurting my pacemaker." Of course that got some looks of pity from those around us and made Greg feel terrible. When we met with Dr. Bove at the reunion he heard him say that once we got that new conduit in there that he'd be hard to keep up with. Now every time he's moving slowly (getting in and out of the car in 105 degree heat, taking forever to get dressed, etc.) he says, "Mom, I'm just slow because my tube is too small and I need a new one. Once I get a new tube I'll be faster." His new favorite game in the pool is "Dunk the Doctor" and he and MK take turns sitting on the steps of the ladder waiting to fall in while the other throws balls at the side of the pool, trying to hit the target. They pretend they are Dr. Bove, Dr. Bradley, Dr. Bromberg and Nurse Colleen. It is pretty hilarious to watch! We wanted him to receive the sacrament of Anointing of the Sick before we left and we had some religious articles that will accompany him into the operating room that we wanted to have blessed. He'll be taking a rosary with Lourdes water inside, a guardian angel prayer card, and two medals. One is of the Sacred Heart of Jesus and one is of the patron saint of heart patients, St. John of God. We visited with Msgr. Callahan, who was the priest at SEAS when I was a young girl. It was partly due to his welcoming spirit that I decided to convert to Catholicism. We chatted for a bit and he got to know Connie and Mary Kathleen. He's been following Connie's story from the beginning and said countless prayers, I'm sure. Connie said he was scared the Anointing was going to hurt, but Msgr. reassured him. He's had it done about twice a year during mass at Assumption, but he was a little nervous this time. Msgr. prayed over him and Anointed him and then we left. We've also been trying to help MK deal with everything as well. She's a very anxious child to begin with so having a brother with a chronic illness has not been easy on her. And in order to help him find a little joy during his upcoming stay, he's been able to pick out some new toys and books to take to play with/read in the hospital. I'm sure that this, along with all the attention he's received from friends and family has made her start to feel a little left out and jealous. She's not typically like that, but she asked when we were leaving the rectory why she never gets Anointed and I think just the fact that Mom and Dad are going to be away from her for a time is a little unsettling for a seven year old. Karsten is, of course, too young to understand or anticipate what any of this means for him. I'm praying that regular FaceTime visits will be enough for him while we are gone. He adores Grandpa especially, so I'm hoping that the fact that Grandpa will be with him and he's going to have his same routines and be in his own house will help. It's Saturday afternoon and we're just about packed. We just have a few odds and ends to gather before we leave on Tuesday morning. We have opted to quarantine Conway until we leave, in hopes we can avoid any illness that would require postponing surgery. It's going to be a long few days at home! Please pray that he remains healthy and that his fears are relieved. We are asking that God give us what we need each day, and that Conway's story will give others hope and increase their faith. One thing Conway is requesting is to FaceTime people while he's in the hospital. Traveling for surgery is hard on everyone. Staying in town definitely has it's advantages as far as convenience, cost and support systems, but we feel that due to his complexity and history, U of M is the best place for him to receive care at this time. He has experience using Apple's FaceTime with grandparents and cousins and would like to use that tool while he's in the hospital as well. We think it would be a good distraction for him and help pass the time. If you have an iPhone/iPod/iPad and would be interested in talking to him, you can leave your contact info in the comment section or email it to me at email@example.com.
Posted by Erin Beckemeier at 3:13 PM
Sunday, June 24, 2012
We made an impromptu visit to Ann Arbor, MI this weekend. Don't worry! Conway is fine. We went for a reunion for University of Michigan Congenital Heart patients. I read about it online Thursday evening and Friday morning while the kids were at VBS, I coordinated with our contact at the Holiday Inn for a room and asked another parent to take over coaching duties for MK's softball game that night (Thanks, Pohlman's!). Right after I picked the kids up from VBS we loaded up for the 9 hour drive. Greg had work to do so I took them by myself. I'm sure if I'd had more time to plan, I would have talked myself out of it, but I was excited and running on adrenaline, I guess! Needless to say, we had a couple of traffic snafus on the way up, so the drive ended up being about 10 hours, but the kids were great the whole weekend and had so much fun. My thinking behind going was that it would be good for Connie to form some relationships with the doctors and staff in a non-threatening environment so that when we go next month for surgery he feels more comfortable. Also, I thought it wouldn't hurt for them to get to know him a little better when he's not sedated... to see him as a real little boy and to see a glimpse of his personality, hoping it would strengthen their desire to do their absolute best for him. We were not disappointed! We saw God's hand in little things the entire day. The sun was shining, the temps were in the 80's, the facility was amazingly clean, Karsten was good despite missing his nap-even after being up until 11 the night before, and the list goes on. Here are some of the best pictures from the event. Connie riding a pony. Normally not noteworthy, but this child was terrified prior to this day of riding anything! Turned out to be his favorite activity! It took him a while to climb to the top of this slide (sorry to the kids in line behind him!), but look at the joy on their faces as they slid down. Bubbles the clown made every kid a balloon animal. Conway chose a dog, MK a bunny and Karsten a giraffe. Showing off his new shirt The man of the hour, Dr. Bove. I wish I could have captured the look on his face when he realized who was approaching him. We had been waiting in a line for about 30 minutes, they had professional photographers, etc. You could tell the doctor was looking at everyone's nametags and trying to figure out who people were. He's done 10,000 surgeries since he's been at U of M, so he likely doesn't remember every case. I knew he wouldn't recognize Connie because he was only 2 the last time he saw him. When he read Conway's nametag, you could see the awe in his eyes. I'm not making this up. He looked up at me and beamed with joy. He shook his head as he uttered, "He looks amazing!" He was referring to the fact that he took such a hit neurologically after the first surgery and it was obvious to him that he had overcome so very much. That one look from the doctor made all the time in the car and the fuss of packing all worth it. It was like a reassurance for both him and me that miracles really do still happen, and Connie is one of them. The man on the right is Dr. Bradley, the electrophysiologist who was able to successfully ablate Connie's atrial flutter in 2009. You have no idea the peace that came over me when this man actually knew the date of Connie's upcoming surgery. It's almost a month away and he's not even a regular patient in their clinic! As soon as he saw us he remarked about how amazed he was that we made the trip and that he looked forward to seeing us again on the 13th of July. What a professional!! The doctor on the left is one of his trainees. Connie told Dr. Bradley that he wanted to be a boxer. Dr. Bradley agreed with me that he should stick to boxing on the XBox Kinect and keep up with bowling instead! Dr. Bradley and his team will handle the programming and initial monitoring of the new bi-ventricular pacemaker that Connie will be getting in July. They printed the pictures of the kids with their doctors and gave them out, along with paper frames the kids could color and keep as souvenirs. Connie apparently thought a 3D frame was a better idea! Karsten snuggling his new Bear Bear. We brought him a U of M bear back from our trip in November and it quickly became his lovey that he sleeps with. We decided we ought to get a back up. Another favorite memory is the Dunk a Doctor game. Connie was especially looking forward to this event and when he heard them announce Dr. Bradley as the doctor in the tank, he took off running! This man is so wonderful! He spotted Connie at the back of the line and pointed him out to his nurses. They started calling Conway's name until he came forward. They kindly explained to everyone he just butted that this was Connie's doctor and they wanted him to have a chance to dunk his own doctor. He gave it his best shot! On the third throw, he nailed it! Down went the doctor and the crowd went wild! I love the look he gave Connie here! Survival Flight even made a stop to show the kids their helicopter And what better way is there to end a perfect day than with a sno cone?! All in all, it was a great little weekend road trip, with lots of fun and memories had by everyone. Hopefully these happy times will help Connie be brave when he's faced with the not-so-happy hospital time coming up. On the drive we listened to his new Vacation Bible School music CD and one song is all about God being with you wherever you go and how God helps you to be strong and brave. I reminded him that God even goes to Michigan, and will help him be strong and brave for his surgery. Conway's surgeon, Dr. Bove, has been honored with an Endowed Professorship in Cardiac Surgery. This site tells more about it and this brief video gives a little insight into just what amazing things he has done over the course of his career to better the lives of children affected by congenital heart disease.
Posted by Erin Beckemeier at 9:44 PM
Tuesday, June 5, 2012
I couldn't stand the suspense of not knowing so I caved and called Michigan today. I was transferred to Kim, Dr. Bove's secretary. They are an hour ahead so it was already 5pm there and she had shut down her computer for the day and was walking out the door. They are so wonderful there that she turned everything back on and looked in Dr. Bove's notes and saw that he has offered us July 13th for Connie's next surgery. That means that pre-op would be on Thursday, July 12th and Connie would be first case (and likely only case) for Dr. Bove on Friday, July 13th. I'm not superstitious, but I'm also not fond of the fact that his surgery will be on a Friday, the 13th. The good news about this date is that hopefully he'll be fully recovered by the time school starts in late August. The bad news is that he won't be able to attend Camp Rhythm, the heart camp sponsored by St. Louis Children's Hospital. This was to be his first year to go to mini-camp (day camp). Our tentative plan is for Connie, Greg and I to drive up on Tuesday, July 10th and take a day to get settled and check out local bowling venues in the A2 area (We promised Connie we'd bowl in Michigan) before pre-op testing begins on Thursday. We will have a room at the Holiday Inn near the University of Michigan until we can get a room at the Ronald McDonald House next to the hospital. Between the grandparents, I think we've got the other kids covered. Please keep us in your prayers as we prepare for this next step of Connie's journey. Here's the boy sporting his Dr. Bromberg fan club shirt ("When I grow up I'm gonna be a cardiologist.") and showing off his survivor hat and zipper scar.
Posted by Erin Beckemeier at 7:38 PM
Friday, June 1, 2012
Well, Dr. Bromberg was at SLCH on Weds for conference and he picked up all of Connie's records from his cath and other labs. He forwarded them on to Michigan for Dr. Bove's review. On Thursday, he got a note from Dr. Bove that he agreed that it was time to replace the conduit. How's that for fast?! Soon, we should be hearing from someone in scheduling at Mott and then we'll go from there. Greg was able to find an Ann Arbor hotel that was willing to barter some of his goodie boxes for a room. They even have 24 hour shuttle service to the hospital and are only three miles away! What a blessing that we don't have to worry about that huge added expense.
Posted by Erin Beckemeier at 5:42 PM
Monday, May 28, 2012
Connie was able to get in two naps Saturday before game time so he was ready to go! Unfortunately, the weather was very warm and our seats were directly in the late-day sun. He spent a few innings out near the concession stand in the shade, but after that was happy to be in the seats and clapping and participating. We sat right next to several heart friends including Averi, Maggie and Abbie Lynn. Averi and Maggie will be attending Camp Rhythm with Connie this summer and Averi will also be having open heart surgery very soon to replace her homograft. I'm so grateful that we have met so many wonderful families on this journey and that he'll grow up knowing he's not the only one battling this disease.
Posted by Erin Beckemeier at 9:27 AM
Friday, May 25, 2012
Conway was discharged a little after 5:00pm. We're so happy he didn't have to stay overnight. He's extremely upset that he isn't going bowling tonight, which was his wish. He also won't be able to swim for a week, which is a bummer given that pools open this weekend and it's going to be 98 degrees tomorrow! We're hoping he feels up to going to the Cardinal game tomorrow evening for Congenital Heart Night at Busch Stadium. His cardiologist will be there, too! How's that for a follow-up appointment?!
Posted by Erin Beckemeier at 6:36 PM
Dr. Balzer just spoke with us and shared the video from the cath. He is still in the lab waiting for the blood thinners to wear off before removing the catheter. Results from todays test reflect what we saw on echo last Monday, meaning so far everyone is in agreement that we are at the point where surgical intervention is necessary. Now we will wait to hear from team in Michigan on timing. After they get Connie settled in the room he'll have to lay flat for 4-6 hours. Hopefully we'll be discharged by dinner time. Thank you for all the prayers! They are working! He remained calm, excited even, right up until about 10 min before the procedure began. He was crying when they took him into the cath lab. They tell us he won't remember it. I hope they are right.
Posted by Erin Beckemeier at 10:31 AM
Thursday, May 24, 2012
I got a call from SLCH today saying that next week's cath schedule looks crazy busy so they want him in tomorrow! We leave at 5:30 and he's Dr. Balzer's first case. We feel so blessed that we were able to get Dr. Balzer after all, and some of our anxiety is relieved knowing that the same doctor who has done his other caths in St. Louis will again be the one doing it. They told us to plan on being admitted Friday night, but we're hoping it will just be a diagnostic cath and that we'll be discharged by dinner time. We'll update tomorrow during/after the procedure. Goodness knows we'll have plenty of time while he has to lay flat for six hours afterward! Pray for him to remain calm. When I tried talking to him about this coming up he started getting all panicky about the mask again. He is deathly afraid of having tubes or anything near his mouth. I think subconsciously he remembers things from infancy and that period of time when his oral aversion was so bad.
Posted by Erin Beckemeier at 2:05 PM
Monday, May 21, 2012
Well, our gut instincts were right. We have been noticing changes in Conway lately related to how much he is sleeping so we had an appointment in the middle of April where Dr. Bromberg was leaning toward thinking this was indicative of his RV-PA (right ventricle to pulmonary artery) conduit needing to be replaced to a larger size, but wanted to give it another month to rule out the possibility of Connie just having a virus or something. We went back today for an echo and sure enough, his RV pressures have gone from 66% in late February to well over 80%. Anything over 75% means that the conduit is too stenotic, or narrowed. He's had this gortex conduit since he was 5 months old, so as his heart has grown, the conduit has stretched and become obstructed. We knew it would have to be changed at some point. Now we're just crossing our fingers that Dr. Bove (his surgeon in Michigan) will be able to use a large enough replacement that it will last Conway a very long time. The thought is also that while he is in surgery he will have an additional ventricular lead wire placed and have his pacemaker generator changed out to a new, upgraded model called a bi-ventricular pacemaker. That would give us more options in the future regarding the mode in which he is paced. When he was younger, he had to be changed to VVIR mode from the typical DDD mode because of his high atrial rates. Today he was switched back to DDD mode to see if that impacts his RV pressures, but we aren't holding our breath that doing that will have any positive effect. The good news is that his function is still good! Surgeons can fix obstruction, they can't fix function, or the squeeze of the heart muscle. The next step will be to have a diagnostic cardiac cath done here in St. Louis and send that info, along with his clinical reports and latest echo to Michigan for Dr. Bove's evaluation. If he agrees that surgery is necessary at this time, we will wait for his team to schedule it and have it done at C.S. Mott Children's Hospital at the University of Michigan, Ann Arbor, where his previous surgeries have been performed. We are hoping to have it done soon, so that he has the whole summer to recover and will be ready to start Primary (kindergarten) in August. We have given the okay to have the cath done by another doctor at Children's besides Dr. Balzer. The reason being is this is purely diagnostic in nature and no interventions will be attempted and we'd get in sooner. We may have to wait weeks to get an appointment scheduled with Dr. Balzer so it would be best just to move forward with the earliest possible date. The American Heart Association Heart Walk was held Saturday at Busch Stadium and Conway had a special treat this year. He got to walk with his heart buddy, Grant, the whole time. He and Grant have the same structural defects and have had a very similar surgical path. Both have pacemakers, both traveled for surgery as infants, etc. They are only 6 months apart and our hope is that they become life-long friends on this journey. They'll be able to confide in someone that understands what it is like to have heart problems. Here's a picture of the two of them comparing their medical alert ID bracelets.
Posted by Erin Beckemeier at 4:10 PM
Monday, April 16, 2012
After a chest xray, exam and nice long chat with the good doctor, we have settled on taking another, closer look in a month. This sleeping more thing has only been going on for 1.5 weeks, so we want to wait a month and see if this is a sustained issue, or could possibly some random virus or have another cause besides the heart. This is probably the beginning of him becoming symptomatic due to the stenosis in the conduit. If he's still sleepier this time next month, Dr. Bromberg will do an echo and likely send him for a cath here in St. Louis and then send the info to Dr. Bove in Michigan for his opinion on timing of surgery to replace the conduit. He said things could go quickly so that hopefully he'd be fully recovered and able to start kindergarten with no restrictions.
Posted by Erin Beckemeier at 6:52 PM