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.

Enjoying Home

It has been an amazing month since Owen was discharged from the hospital. Owen has done wonderful in the weeks since coming home and had so many fun experiences. It has been a true blessing to finally be home after such a long stay in the hospital.

Owen quickly adjusted to being home. He has been smiling non stop and making up for lost time at the hospital. He sleeps without being interrupted. He has been able play with all his toys and continues to develop new skills. He gets to wear new outfits and not just pajamas that button up. Owen met all his cousins and had a number of visitors stop by to meet him.Here are a few things that he has been able to do:

He enjoys his baths and his warm towel.

He got to see his first snow .

He discovered Mom's "Owen Strong" bracelet and fell asleep holding it. 

He gets to hang out on the couch and read books. 

 

He gets to talk, hold hands, and play with his cousin Max.

Owen has a had a couple of doctors visits including his first peditrician appointment, a follow up with cardiology, a meeting with the surgery team for his hiatal hernia operation, and a meeting with Hematology to discuss his high platelet count due to his asplenia.

Cardiology was very pleased with how Owen's heart was performing. The valve ia holding up and his heart function actually improved a little from the last time he was evaluated. We scheduled his Hiatal Hernia operation for December 11. The procedure is laproscopic and minimally invasive. It will bring his entire stomach below the diaphragm and help him feed in a more normal fashion. Even though the procedure is minimally invasive and normally would be an outpatient procedure, Owen will have to spend a couple days in the hospital due to his heart condition. The doctors want to monitor is heart for a little bit post surgery. As part of the operation, Owen will have a G tube placed in his stomach which will be accessible through a port on his side. owen will need to be able to tolerate his feeds in this new way before leaving the hospital. This will also allow Owen to have the NG tube removed from his nose and face. Once he fully tolerates feeding orally, the G tube will be removed. We are very excited to have the NG tube removed from his face and be able tos see his huge cheeks and adorable face more without tubes and tape.

The Saturday after Owen came home, his Great Grandma passed away after 96 years. He only got to meet her through Facetime, but she loved Owen and his smile. My Grandma lived a full life and her last wish was that she could offer a trade with God, she would go to heaven if Owen could come home. The fact that she held on long enough to see Owen come home was a truly special moment and showed what a wonderful woman my Grandma was.

Owen was fortunate enough to experience his first Thanksgiving with his family. We were so lucky to be home to be able to experience the holiday with everyone. It was extra special to spend the time with out family after all that we have to be thankful for this year.

Owen is such a lucky boy to have so many people praying and caring about him. He continues to be spoiled and receive some extemely thoughtful gifts. We would like to thank Brendan Hosty, Alison Kropf, Emily Kaniecki, The Mirtes, Great Grandma Fagel, Debbie and Jim Murphy, The Brown's, Katie Lowstuter, The Thelen's, The Bolger's Steph Miles, Holly Piddock, and The Thompson's for sending Owen toys, books, and clothes and also food and wine for Mom and Dad. We can't thank you all enough and let you know how much it has meant to us to have your support. We wouldn't have been able to get through this without all the prayers and support of so many wonderful people.Owen also got a pair of custom Nike's from The Frericks that he looks awesome in. Thanks again to everyone for everything.

Owen quickly got in the Christmas spirit and loved looking at his first Christmas tree. He even helped decorate with his very first ornament thanks to Ali Stigler.

Owen is ready to take on this next operation and move forward. The hope is that after a quick recovery, Owen will work on eating, growing, having fun, and being a kid. We look forward to more great experiences ahead for our Little Warrior. 

The Frericks, Holly Piddock, Steph Miles, Brendan Hosty