Going Home and Continued Recovery

It has been 3 weeks since Owen's surgery. This operation and recovery has been night and day compared to his first two surgeries. Even our concerns handling Owen as a 2 year old instead of a baby has been much easier that we expected.

On Wednesday morning, 6 days after the operation, we were informed that we were being discharged from the CICU and sent to "The Floor" or the the step down unit. Owen still had two chest tubes to alleviate some drainage from the operation, but he no longer needed to be under the care of the ICU.

We packed our stuff to leave in the morning and waited for the transportation process to begin. We waited for a couple hours when someone finally came in and told us they had some bad news. A patient had been admitted and there were no beds available. While we would be considered as out of the CICU, we would have to remain in our CICU room another night. This was unfortunate news, because being in the CICU room vs. the Step-down room is like being in a motel instead of a resort. However, we understood the situation and were not overly concerned as long as it didn't delay our discharge from the hospital. Around 5pm, after we had unpacked a re-settled in the room, we got some unexpected news that we would indeed be moving to the Step-down unit immediately. This was unexpected and welcomed news, and we have a feeling someone pulled some strings for us to get moved.

We settled into our new room Wednesday evening, which included much more privacy, significant reduction in noise, better parental sleeping conditions, and the ability for us to eat in the room. At this point, the only thing keeping us in the hospital was the drainage into his chest tubes. Once the drainage reduced, the tubes would come out and we would be even closer to going home. On Thursday, the drainage was borderline, so they decided to keep the tubes in for another day to be safe. Given how smooth and rapid his recovery has been, they didn't want to take any risks. Thursday included some time in the playroom on The Floor, some additional walking, and enjoying the peace and quiet in the new room. On Friday, the drainage was still right on the requirement borderline to have the tubes removed. They did an X-ray before removing the tubes and saw a little cloudiness in his lungs. They talked it over for awhile, and came to the conclusion that they could remove the chest tubes. They increased his diuretic and  had us stay until Sunday so they could get an X-Ray on Saturday and Sunday to be sure fluid didn't build up in his lungs.

The chest tube removal process was painful for Owen. He was given some morphine before, but he was still very uncomfortable as they pulled the tubes out and stitched him up. With the tubes out, he was generally much more comfortable. With each step and each day, Owen regained his personality and attitude. Saturday was spent hanging out and watching The Lion Gaurd movie over and over and over and over.

Owen had his chest X-ray bright and early Sunday morning to confirm everything looked good and we were sent home. It was very exciting to be able to take Owen home that soon after his operation. Owen was immediately more active at home than he was in the hospital. He had some visitors that he hadn't seen in awhile to welcome him home.

A couple days after being home, Owen started to swell up significantly, especially in his abdomen and legs.We had a follow up visit the Friday after being released, and everything cardiac wise looked great, but we couldn't figure out what was going on with the swelling. His diuretic was increased to try and relieve the swelling. It took a couple days, but the swelling started to subside on Tuesday. It is obvious he is still adjusting to his new circulation, but he is getting better each day. He should be fully healed in about 3 more weeks, just in time for the warm weather.

Thank you again for all the support through this journey. Owen will never be fixed, but we look forward to getting back to normal and staying out of the hospital for a very long time.

Surgery Day and Recovery

The morning before Owen's surgery was filled with pre-op appointments at the hospital. From 8-1:30, we spent the day doing blood work, X-rays, ultrasounds, and meeting with the surgical team to discuss the surgery the next day. Owen was an absolute trooper through all of it, especially after a rough experience getting blood drawn to start the day. He may have been bribed with McDonald's after the appointments, but regardless, he couldn't have been better given the circumstances. We enjoyed the rest of the afternoon with each other at home knowing that this was going to be our last normal day for a while.

We woke up at 5 AM on surgery day to be at the hospital by 6:30. We woke up Owen and gave him a special bath to clean his chest. We packed the car and got ready to leave, but just to make things interesting, as Michelle walked out the front door holding Owen, she promptly slipped on the ice and slammed on her back. She was able to keep Owen from hitting the ground, but it scared both of them pretty good. It was not a great start to the day.

We arrived at the hospital and got Owen prepped for surgery. We were able to give Owen some medicine to make him loopy in order to make the transition of handing him over to the surgical team. We walked Owen back right at 7:30 to hand him away. We gave him hugs and kisses, said I love you, and watched him be carried away into the Operating Room. The rest of the day would be spent in the waiting room watching the clock tick by. Our supportive family all showed up to keep us company throughout the day. We got our first update around 9:30 that the incision had been made and they were beginning the surgery. The receptionist told us they had scheduled the surgery for about 7 hours, but we knew that the time allotted covered the unlikely scenario that they would perform the Fontan. From 9:30 on, we received updates from the surgical team nurse every 1.5 -2 hours. The first update around 11 was that he was on the bypass machine and they were in the middle of the procedure. The second update came around 1 that he was doing well and they were moving along nicely. The next update came around 2:30, which we were expecting to hear that the surgery was finishing up. Instead, we were told it looked like Dr. Morales was working on the Fontan. This brought gasps from all of us. The nurse couldn't confirm 100%, but she said from what she could gather, it looked that way. If true, it meant a lot of positive things. It meant Owens pulmonary vein was possibly not as big of an issue as originally believed. It also meant Owen would potentially be spared from a guaranteed 4th open heart surgery in the year to come. We were on pins and needles waiting for the next update to confirm. We theorized that the longer the time between updates, the more likely they were indeed doing the Fontan. After about an hour of waiting, Michelle couldn't take it anymore and decided to text the nurse with hopes she would confirm. Sure enough, a quick response back confirmed "Yes!". We broke out in tears and hugs with this unexpected good news. A little later we were informed they were finishing up, Owen was doing well, and Dr. Morales would be out soon to talk to us.

Dr. Morales filled us in on the details, most of which we didn't understand because of the medical terminology. The pulmonary vein was open and the obstruction was caused by a thin membrane inside the vein, not a build up of scar tissue. He was confident the pulmonary vein would not be a problem. The pressures in his pulmonary vein, artery, and Superior Vena Cava were all the same, which is exactly what we want for the Fontan. He cautioned that there was still the possibility that the Fontan would not take, and if that were the case they would quickly have to take it down. He indicated that it would probably become evident in the next 48 hours if the Fontan would not be supported. They would take it down and try again in a couple of years if that were the case, but he felt good about it working. We were so happy to hear the update, while trying to remain cautious. Before Dr. Morales left, Michelle asked if she could give him a hug. She hugged him tight at told him that he was our savior.

Around 5, we were told we could go see Owen in the CICU. We rushed up to see him. Our cardiologist, Dr. Madsen, was in the room waiting for us. It was very comforting to have a familiar face waiting there and to talk through some of the next steps. They had removed the breathing tube from Owen, which was an important step, and he was already starting to come out of the anesthesia. We were shocked that he was somewhat awake and talking, even though he wasn't making sense. It was incredible looking at his color and seeing the monitor show his blood saturation levels at 99% oxygenated. For those that remember, Owen's blood saturation levels were in the 60's after his first surgery, which kept us in the hospital for 4 months until his second surgery. Even after his second surgery his oxygen levels were in the mid 70's which attributed to his blue color and his heavy breathing when active. To now be in the range of where people with healthy hearts are, was amazing.

Owen did great on his first night of recovery. Dr. Morales came by with surgical rounds in the morning and said the night went as well as we could have expected. Owen was a little more out of it on Day 2 of recovery, which was to be expected. Around 3 on Day 2, we got our first scare. Owen started "de-sating" and we had a team of doctors and nurses converge on the room. They increased his oxygen significantly and did a blood draw to run some tests. His CO2 level in his blood was high and his O2 level was low. Michelle and I initially thought the worst, because we were told that if the Fontan did not take, Owen's saturation would drop real low. The respiratory team told us they thought it was due to Owen's throat being inflamed and some weakness with his throat muscle. They said this was completely normal occurrence for kids with the heavy sedation and having a breathing tube removed. He was given a couple doses of steroids and was back to normal in a couple of hours.

The days after were filled with keeping Owen comfortable and trying to get him to start eating and drinking. With each day, Owen is having lines and monitors removed. On Monday, Owen got his first of three chest tubes that collect drainage from his abdomen removed. Physical Therapy also came by and had us take Owen out of his room to go play. He didn't have a ton of energy and was still a little uncomfortable, but it was good to get him out of the bed.

On Tuesday morning, Dr. Morales was by with surgical rounds and to check on Owen. He smiled and gave Owen a thumbs up and said "thank you for doing so well, buddy".  Owen has continued to improve his eating and drinking. All of the IV fluids and medicines have been turned off and they plan to ween him off of oxygen as well. The plan is for transfer to the step-down unit on Wednesday. We are very happy and excited with his progress. The step-down unit will offer a more private room and allow us to simulate home a little bit more than the CICU. Hopefully, the stay in the step-down unit will be short as Owen continues to improve.

Thank you to everyone that has been praying and thinking of us. We have received an overwhelming display of support from so many people. We are so appreciative of everything and it has kept us positive through some tough times. 

Heart Surgery #3

It's hard to believe it's been over two years since our last blog update on Owen. We knew from when we first found out about Owen's condition that this would be a step by step journey and he would never be "fixed", but for two years we have been enjoying a happy, normal life. Owen has overcome so many of the early obstacles thrown his way. He graduated quickly from physical and occupational therapy. He ate is way off of a feeding tube and had the feeding tube button removed from his abdomen just over a year after having it put in. He has hit all the appropriate milestones for his age and has even exceeded some, including his verbal skills. He loves seeing his family, reading books, going to the zoo, and playing with animal toys.

We were expecting Owen's 3rd Open heart Surgery sometime between the Fall of 2016 and the Summer of 2017. He was set to have what is known as the Fontan procedure. His last surgery was the Glenn procedure, which took the Superior Vena Cava carrying the non-oxygenated blood from his head and connected it to his lungs, bypassing the heart. Because Owen has what is known as a single ventricle heart, his physiology is going to be changed so that the one ventricle will pump oxygenated blood to his body and the non-oxygenated blood will passively drain into his lungs. The Fontan completes this new set-up and sends the non-oxygenated blood from his lower body to his lungs. They wait to do the Fontan until kids get bigger because the blood from the lower body needs to be assisted by muscles in the lower body to get to the lungs and until they are actively walking, that is not possible.

Owen was presented at a surgical conference in December to review his records and decide when to have his next operation. After the conference, our cardiologist, Dr. Madsen called to update us on the determined path for Owen. Since his last surgery, Owen's pulmonary vein has been a major area of focus. The vein carries the oxygenated blood from the lungs to his heart to then be pumped to the rest of his body. There is some obstruction in Owen's pulmonary vein which does not allow free flow of the blood. Because of this, adding more blood to the pulmonary vein without ensuring it is as unobstructed is possible can be risky. We met with Owen's surgeon Dr. Morales, and he talked to us about how they wanted to be cautious in their approach. Because of the obstruction in the vein, the want to make sure that is open before moving forward with the Fontan. They could do the Fontan, but if the vein could not handle it, it could be exteremly harnful and they would have to operate quickly after the first surgery to take the Fontan down. Instead, they want to operate on the pulmonary vein, make sure the obstruction can be relieved, and then do the Fontan about a year later. There was a lot of back and forth during the surgical conference because obviously they would like to limit the number of surgeries, however, they want to take the safest approach. Doing this surgery in two stages was determined to be the safest path. There is a small chance that Dr. Morales will perform the pulmonary vein correction and determine that it is safe to do the Fontan, but that is highly unlikely at this time and there is no way of knowing until he is performing the operation.

 So, on Thursday, February 9th, Owen will be going back in for his 3rd heart surgery. It is hard to compare this with his 2 previous heart surgeries, but this surgery will present a new set of challenges. Owen is smart, he is aware, instead of a being a little baby who doesn't know any better, he is a toddler who understands and we have grown more in love with everyday. Seeing him in pain and not able to do the things he loves will be excruciating.

We greatly appreciate all the kind words, thoughts, prayers, and gestures as we get ready to embark on another diffcicult stage of this journey. Owen is a fighter and we know he is up for the challenge. We will update the blog as much as possible to keep everyone updated on Owen's progress. Please keep our sweet boy and his medical team in your thoughts and prayers.

Home Again

As we were getting ready to be discharged Tuesday morning, January 6th, our cardiologist came in to our room one last time to listen to Owen. After walking in and seeing our room packed and us itching to go, he joked "this has been a pretty long 5 days". We came in on December 11th under the impression that we would be home in 3-5 days and now we were on our way home after 27 days in the hospital. 

Owen dressed and ready to go home

Owen was excited to be home, as were we. 

Owen's custom flag from Great Uncle Jay

We continue to work on condensing his feeds to the point where he will not be hooked up to the feeding much throughout the day and give him the opportunity to start eating food by mouth. He has been catching up on alot of sleep after being in the hospital and being bothered every couple of hours. We will continue to have a number of doctor's appointments between the pediatrician, cardiology, the surgical team, amoung other specialist, but the hope is that the hospital will not be in our future for a long time. 

Owen won't ever be fixed, so the journey won't ever end, but with this last hurdle, we hope that we can start moving toward a little more normal childhood with time spent at home growing and playing. 

Owen reunited with his cousins and aunts

It's surreal to look back at these past six months and to think of all that has happened. The twists and turns are almost hard to comprehend. We can't thank all the people that have supported us through this enough. I don't know how we would have gotten through this without the overwhelming support that we have received. Our parents and family have kept us going with constant support and assistance. They were routinely at the hospital spoiling Owen, bringing us food, letting us get away for a little bit, and making sure that we took care of ourselves. We received such overwhelming support from the fundraisers from so many people. It is hard to comprehend the generosity that so many people showed to us. We thank you all again from the bottom of our hearts.  We received a couple of gifts upon our return home from Great Grandma Fagel, Great Aunt Renee and Uncle Dan, Great Aunt Mary Ellen and Uncle Dick, the Allen's, and the Morris family. While we were in the CICU, our room had a view of the Cincinnati Zoo and we could see the Festival of Lights at night. We were anxious for the time when we could take Owen to the zoo. A few days after we left the hospital, we received an email saying that Maggie Wuellner, Molly Messenio, Sarah Orebaugh, Jessica White, Lee Cassiere, and Lindsay Dressman had given us a membership to the zoo. We also received an amazing a sentinmental gift from Michelle's sisters that was this blog converted into a book. It is something that Owen can have forever to look back at the warrior effort he put up and all the people that cared about him. Thank you all again for following along these past 6 months. We will try and keep everyone updated on Owen's progress. We probably won't update the blog as frequently in hopes that there is nothing major to report and we are busy playing, laughing and smiling with our little warrior. 

More twists and turns on the road to recovery

The next step to trying to figure out what was going on with Owen's GI system was an upper GI scope and placement of an NJ tube. The scope would be able to take a look inside to see what was going on and the NJ would be placed through Owen's nose and empty into his small intestine, completely bypassing his stomach. This would allow Owen to start feeding on real food again and to get him off of the IV nutrition that he had been on for almost 2 weeks.

The scope procedure took about an hour. We have grown to expect to hear that there were some complications, as has been the case with just about every procedure that Owen has been through. We were called back to speak with the doctor who performed the scope to review how the case proceeded. The doctor quickly informed us that while Owen did well, they were not able to get the NJ tube down. The scope made its way past the stomach but encountered a blockage at the begining of the small intestine that they could not get past. While this wasn't a surprise, it was a little disheartening. We knew that this meant another surgery was going to be necessary.

We spoke with the surgeon, Dr. Von Allmen, that night and he said they would be doing the surgery on Friday. He wanted all the right people to be involved and with Christmas Eve on Wednesday and Christmas on Thursday, that wasn't going to happen until Friday. The surgery would involve removing the G tube that was in his stomach and replacing it with a J tube that would go directly into Owen's small intestine. The stomach, which was pulled down and secured to his abdomen wall during the first procedure, would then move back towards the place it was before in the middle of is abdomen behind his liver, which would hopefully alleviate the blockage.

The next two days were no doubt difficult. We did not have any expectation to still be in the hospital for Owen's first Christmas when we brought him in nearly two weeks prior. Our families were once again remarkable and came to have meals and spend time with us on both Christmas Eve and Christmas Day. It truly ended up being the best of an unfortunate situation.We are so lucky to have two families that provide so much love and support.

 Owen was not spared from dressing up in Christmas outfits and being put through a photo session. He modeled this outfit for Christmas Eve:

And this was his Christmas Day attire:

We also can not say enough about what Child Life Services at Children's, as well as a number of other organizations, do for kids in the hospital over Christmas. Child Life organized a free toy store for parents to shop for their kids. In a large room full of toys all donated by the community, we were able to "spend" 6 tickets on any gifts we wanted. There was an amazing selection and it was overwhelming to see the kindness of so many people to help families who would be spending Christmas in the hospital. Owen also received a nice gift bag dropped off by the Ruth Lyons organization. It wasn't Christmas at home, but it was a very touching to experience.

We weren't sure what time Owen's surgery was going to be, but we were assured that it was going happen on Friday. Around 7:45 in the morning, someone from anesthesia came to our room for us to sign a consent form. I asked him if he had any idea when Owen's operation was scheduled to begin and he told me that they had already started on the case and they would be coming up to get Owen in 30 minutes to an hour. We scrambled to get ready and they came up around 8:30 to take Owen down. Owen was once again very calm and enjoyed the ride in his bed down to surgery. We hugged and kissed our little warrior before handing him off. Unfortunately, this is a feeling that we have become a little too familiar with. The procedure began around 9 and they estimated it would take 2-4 hours. We got the update around noon that they were finishing up and the doctor would be out to talk to us. We spoke with Dr. Von Allmen who performed the operation and he seemed very pleased with how things went. Fortunately, they were able to use the same incision they went through for the first operation and they were able to use the same hole in his side for the J tube that they used for the G tube. Owen's stomach was moved back to its original spot which helped to open up the blockage in his small intestine. The J tube was placed further down in his small intestine and was much more secure than the G tube. Dr. Von Allmen said he felt much better about this set up than the previous one. He also felt that Owen would be fully able to feed by mouth at some point, which was a relief to hear. It will take alot of hard work to teach him to eat again, but to know that he could be able to eventually eat was something positive to hang on to.

Owen recovered for about 48 hours and then we finally saw the big smile that we hadn't really seen since we were home.

The plan for Owen's feeds is one of time and patience. The procedure included a splitting of Owen's intestine to make a Y so that the J tube could enter into a branch of the Y and not obstruct any part of the digestive tract. They want Owen to feed, but began introducing it at a very slow rate so not to aggravate any part of the intestine. The goal is to get to the point where Owen can get his feeds over 24 hours. We would then be able to work on condesing it more at home over time. Overall, he is doing really well with the recovery and continues to do well with the feeds.

Owen rang in the New Year in style from the CICU. He was ready to put 2014 behind him and looking forward to 2015.

On Friday, January 2nd, we were finally able to move to the step down unit. We continue to increase his feeds and are slowly getting to the point where he will be back to full feeds.

We are so fortunate to have so many great people in our lives. Owen recieved some nice Christmas presents from the Heekin's, the Vollman's, Ashley Naseef and Andrew Mason, the Hambleton's, Liz and Emily Lyle, his cousins Josie and Leo, Betty Breyer, Great Uncle Jay, Great Aunt Renee and Uncle Dan, Caitlin Doncouse, Alicia Speed, Chritine Peak, and Valerie Killinger. The Dutro's delivered a gourmet homecooked meal. We also received a canvas painting of Owen flying over Cincinnati painted by Alex Mann and given to us from Steph Miles. We can't thank you all enough. Your gifts meant so much to us at a difficult time and made Owen's first Christmas as special as it could be.

Deja Vu

When we got ready for Owen's procedure to fix his hernia, we were told the recovery would be 3-5 days. Based on our past experiences, we went ahead and assumed it would be at least 5 days. The operation was on Thursday and we figured the middle of the following week would be our discharge goal and we would be home and moving forward. As the case has been throughtout this entire journey, it was way more complicated than we thought.

Owen was progressing post surgery and everything looked good the weekend after the operation. We started to test his feeding tolerance, which was the ultimate hurdle to going home. He had to be able to handle 24 hour continuous feeds before we could get out of the hospital. Once he reached this goal, we could work on compressing his feeds at home. All his feeding would be done through the G tube, which was on his side and went directly into his stomach. We had to wait for Owen's gut to wake up before we could begin the feeding process and we were told that during an operation on the stomach/intestines, they sort of go into shock and take a few days to wake up and begin working.

On Sunday, we changed the way his G tube was draining to see if Owen would tolerate his own secretions. All of his feeding tests were over 8 hour periods. If he did well with each step after 8 hours, we would move on to the next step. He seemed to do pretty well with the first step of tolerating his secretions. He was coughing up some stuff that mostly looked like mucus/spit, but he didn't seem to have much trouble with it. The next step was to feed him Pedialite at a rate of 10 MLs per hour. The Pedialite would absorb in his system very easily. After 2 hours on the Pedialite, Owen threw it back up. This wasn't unexpected since it was the first time he was eating and the doctors said his gut was not fully awake. We continued to try the Pedialite and he continued to vomit. Then overnight Monday, Owen tolerated the Pedialite for 8 hours. He spit up at the end of the 8 hour period, but it was determined that we could move to start feeding formula.

We began to introduce formula, which is a little heavier and tougher to digest, at the same 10 ML/ hour rate. He was vomitting pretty much every 2 hours. His bowel sounds were still not completely active, so we just kept trying to see if he would improve and tolerate the feeds better. He continued to vomit fairly regularly. I think they had to call in extra laundry staff to deal with all the sheets and towels that we were going through.

Overnight Tuesday, he actually tolerated his feed for 8 hours. He promptly vomited at 8 hours, but this was seen as progress and it was decided to push him a little bit more with 15 MLs an hour. He began to vomit regularly with the increase. It just seemed like the feeding wasn't quite working for whatever reason. Being almost a week removed from the surgery, we were expecting to see a little more progression.

Around 11pm Wednesday night, while Owen was sleeping, his heart rate started jumping all over the place. It started to jump up close to 300. He had slipped back into the arrythmia that he encountered after his first heart surgery in July. We were quickly shipped back to the CICU. Owen was stabilized and was given some medicine to slow down his heart. He finally came out of the tachycardia early Thursday morning. It was a scary moment to see Owen going through this again. It was also deflating to realize this was not going anywhere near according to plan. One week after surgery, when we thought we would be home 3-5 days later, we were now back in the CICU no closer to going home than when we started.

Owen spent the next two days pretty much sleeping. Owen is such a happy baby after all he has been through and to see him sleepy and lethargic for 2 days straight was very difficult. They tried feeding again at an even lower rate of 5 MLs and he still wasn't tolerating so on Friday afternoon, we were ordered for an upper GI series. They were going to put some dye in through his G tube and see where it went. They took X-rays after the dye was put in and it was quickly evident that nothing was draining from his stomach. Everything was sitting and collecting until he threw it back up. Because of this, all medicine and feeding through his stomach were stopped. Over the weekend, Owen's surgeon stopped by to talk to us and was very apologetic about how everything had gone. He told us that in his 20 + years of operating, Owen's anatomy is the most complicated he has ever seen. Unfortunately, there are no awards for that. He told us that they are working to figure out what is going on. The next step was to get a scope of his upper GI and to place an NJ tube through his nose which bypasses his stomach and empties into his small intestine so he can begin feeding. Unfortunately, they don't do those procedures over the weekend and the earliest we can get in was Tuesday. The procedure is fairly quick but it still requires Owen to go under general anesthsia and have a breathing tube placed.

Owen has not had anymore arrythmia issues since the scare on Wednesday night. He has slowly gotten his personality back, but is still frequently in pain and not happy. It has been pretty frustrating to go through this again, especially when Owen was doing great before the surgery. This procedure has just seemed to make things worse and to add to the mounting frustration, we were not able to attend Owen's Grandma Juju's birthday party and will be spending his first Christmas in the hospital. We are hopeful that the scope on Tuesday will provide us some clearer answers and help us get Owen back to the happy, growing boy he was before this operation.

We would like to thank everyone for the support we have received in this difficult time. We would especially like to thank Chas Allworth and Ashley Spataro, Ed and Cheryl Polaski, and The Levin's for sending some thoughtful gifts for us and Owen. Owen is truly lucky to have so much love and support through these tough times.

We will keep everyone updated as we learn more. Thanks again for all the thoughts and prayers.

Surgery and Recovery

Owen's hiatal hernia surgery day arriving was bittersweet. We had been enjoying our time at home being a faimly and doing fun family things and the realization of going back to the hospital for another operation did not sit well. However, we knew that this was a necessary operation to help Owen start moving towards a more normal feeding regiment and continuing to stay healthy and grow.

The night before surgery, the three of us were laughing and having fun. We took some pictures of Owen in his superhero cape to show he was ready to take this next operation on.

We sent the pictures to our family and discussed how this operation would result in the removal of his NG tube from his nose. We were fortunate that during our time at home, Owen had not pulled his NG tube out of his nose and made us put it back in. It is not a fun process putting the tube back in and Owen especially does not like it. No more than 5 minutes after the discussion, Owen felt the need to show us his rebellious side and pulled the tube out of his nose. He was very happy with what he had done. We were not quite as happy. 12 hours before he had to stop feeding and have the tube removed for good and we had to put the NG tube back in. Owen obviously got his Mother's patience and figured he had had enough of the tube and would help us all out by removing it. He definitely knows how to make us laugh and keep us on our toes. 

We arrived at Children's Hospital around 10 am to check in for the operation scheduled to begin at 11:45. Our mood was considerably more upbeat and positive than before his previous opeations. After going through 2 open heart surgeries, this seemed like a walk in the park. We were taken to a waiting room where information was gathered on Owen and all the logistics were reviewed. We were told that surgery was running about a half hour behind, so 12:15 was our new time. Thye soon after updated us and said that surgery was now running an hour behind, so 12:45 was the new projected time. Owen was in such a great mood throughout it all. He had not eaten since 7 am and yet was still laughing, smiling, and talking to us.  

Around 1, they told us that the surgery team was ready, but they had to wait for a bed to open in the CICU for Owen to recover and it might be another hour. Owen somehow was still in a great mood. Finally, around 2:30, they were ready for Owen.

We walked Owen back to the operating room and we met some of the team who assured us that he was in good hands. We gave Owen some last hugs and kisses and handed him over to the surgical team. Owen remained calm throughout as we walked away and he showed us how brave he is.

We met our parents in the waiting room and prepared to wait for what was scheduled to be about a 3 hour operation. We got an update at 3 that Owen was doing well and the operation had started. About 15 minutes lates, we got another call for an update. We were not expecting to hear from them so soon. They informed us that the surgeon had quickly decided that this would no longer be a laproscopic procedure and they would have to perform an open procedure. We knew that this was a possibility, but it meant that Owen would be in a little more pain in his recovery. Owen's surgery was completed around 6 and he also got an echo while he was under sedation.

We spoke with the surgeon after the procedure, and as we had come to expect, the operation was not as straight forward as they thought it would be. Owen had a laundry list of procedures to be performed including, pulling his stomach down into his abdomen, patching the hole in his diaphragm, performing an anti reflux procedure wrapping the stomach around the esophagus, placing a G tube into his stomach, performing what's called a Ladds procedure to prevent his intestines from twisting due to the malrotation that he was born with, removing his appendix, and while he was under, they performed his circumcision. When the surgeon began the procedure laproscopically, he looked on the left side for Owen's stomach, and couldn't see it. Then he looked on the right side and couldn't see it. At that point, the deciosion was quickly made to perform an open procedure. They found his stomach directly behind his liver. Once this was located, they were able to do everything but the anti reflux procedure. Owen's esophagus wasn't quite long enough for this procedure to be properly executed. This means that Owen could have some bad reflux problems when he begins feeding and potentially would have to be fed into his small intestine to prevent that from happening. This would also mean that he would have to be on pump feeds continuously. These are things that will play out over the next couple of days.

The echo revealed that Owen's heart was still in good shape, but they did see some narrowing in his pulmonary veins that were repaired in his first operation. The doctors said this is something that they will have to follow to determine if it continues to get worse and there is any blockage that may need an intervention. They aren't overly concerned at this point, but it is something that is just part of the game when you are dealing with such a complicated heart.

Owen was taken to the CICU for recovery. We were able to get into our room and see him around 7pm. He was pretty out of it, but luckily, he had his favorite monkey to make him feel safe and comfortable waiting for him as soon as surgery ended.

Owen had some pretty intense pain over night and also had a fever, which we were told was pretty standard post operation. Other than dealing with the pain, he was doing very well. The next morning we found out that they were ready to move him to the step down unit, which was welcomed news by all. In a cruel twist of fate, we ended up back in the same exact room that we had spent 2 months in the fall between his two heart surgeries. We had a couple nurses, doctors, and even cleaning ladies jokingly welcome us home.

The next couple of days will involve Owen coping with the pain and waiting for his bowel functions to return. Once that happens, we can begin feeding and hopefully get back home soon. We will keep everyone updated on the progress of our little warrior in the coming days. Thank you all for the continued prayers and support.