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