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.
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.
