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.

Post Op Day #2 - PM Update

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

Post Op Day #2 - Plan for the Day

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.

Post Op Day #2-AM Update

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.

Slowing Down Just a Bit

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!

Post Op Day 1-AM Update

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

Surgery Day Evening Recap

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 :(

Sorry for the lack of updates this evening. The hospital's WI-FI has been really sketchy all day and it is not easy to compose a lengthy update on the phone. Plus, we've been kept hopping!

Post Op Surgeon's Report

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.

Surgery Update #3 and #4

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.

Surgery Update #2

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.

Surgery Update #1

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.

Surgery Day

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.

Here he is in the pre-op holding sniffing all the flavors before deciding on fruit smoothie for his mask.

Travel Day

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.