The Tease

"We are preparing to send you home Sunday or Monday". Those are the words we heard at the start of our 6th week. We were excited, but we tried to restrain ourselves and not get our hopes up too high. We knew that there was a long way to go and plans could change in an instant.

In order to be discharged, Michelle and I had to go through a laundry list of training activities and educational discussions so we could properly care for Owen when we got home. We had a meeting with our main contact who we will check in with everyday with updates on Owen. We will be sent home with a scale and a pulse ox and we will report to her daily with Owen's stats. We went over how to monitor Owen and red flags to look for that would indicate we would need to get him to the hospital. 

We started giving Owen his 6 medicines ourselves and learned how to properly draw and dose them. We had already been doing most of the care for Owen and were leaning on the nurses for things that we couldn't do, like working the equipment and getting his food and medicine together. 

Owen did pretty well at the start of the week. He was having some issues with his feeding and he was throwing up frequently. His oxygen saturation levels in his blood were also dropping around his feeds and he was showing signs of reflux. The doctors decided to try putting Owen on  a continuous feeding plan to try and combat the reflux and subsequent desaturation. He would be slowly fed through his NG tube for 20 hours out of the day. This was to prevent his stomach from getting too full and causing reflux and desaturation. 

 Despite the physical ailments, Owen was having a great week showing off his personality and playing around. He loves to lay in his bed and listen to music. He fires his legs up and down and talks to us. He also appears to have figured out night and day and has been sleeping much better through the night.

In the middle of the week, he had some issues with his saturation levels dropping. They put the blow bi (oxygen mask) by his face to give him some extra support and he loved feeling the oxygen flow in his face. He smiled and pulled the mask right up to his face. The doctors and nurses had a good laugh. The soothing sound of the blow bi quickly put him to sleep.

Unfortunately, it wasn't working quite enough and they had to strap the nasal cannula to his face to help get his saturation levels up. Owen also started developing a cough. It wasn't much at first, but by Thursday it had gotten worse and he started to sound really congested. Through all of this we were still on schedule to be released in a few days. Then at 5 am Friday, we woke up to the sound of Owen's alarms going off. His saturation levels had dipped into the low 60's and high 50's. They increased his oxygen but it took about an hour to get him back up to 70 and at a stable level. The doctors and nurses were all inspecting him and even with his dips, he still looked well. They couldn't figure out why he was doing this. His cough worsened on Friday and we insisted that he was sick. They decided to test him for a panel of viruses to see if he was indeed sick. At this point, we knew that we weren't going home in a couple days anymore.

Owen was steady through Friday and we found out Friday evening that he was sick and he had contracted para influenza #3. This is a sort of mini flu virus that is prevalent in hospitals and only affects children under the age of 3. Owen was really coughing and sounding congested. The doctors let us know that this virus would definitely be a factor in his oxygen levels dropping because it causes  the esophogus to tighten up and keeps him very congested in the upper respiratory area. There isn't any medicine they could give him, so we just had to wait for him to clear it out.

While it was tough to prepare to go home only to be let down, we were glad that we didn't go home and have to turn around and be readmitted. We still had a fun weekend playing with our Little Warrior and he already started to show signs of improvement. We read books, took a bath (Owen's first "real" bath as we had to wait for the PICC line to be removed), sang and danced to some music, and had some tummy time. We are taking things one day at a time and hoping Owen can feel a little better each day.

We again want to thank everyone who has been so kind and generous with their support of us and Owen. It is hard to believe it has been 7 weeks in the hospital, but you all have made it so much easier to make it through these difficult times. Both Grandma Lulu and Juju got Owen some new outfits to round out his summer/fall wardrobe. We received an extremely generous gift from the Jones family along with some Bengals gear just in time for the season. Evie Dirr sent a nice little blanket over for Owen to snuggle with, Pete and Natalie Gillespie sent over a care package with some much needed treats. Our little friend Kierstyn somehow continues to raise money and amaze us with her kindness. Patricia Sumner had her aunt hand made this incredible diaper bag with Owen's name embroidered on it and covered in bees.

We are also so lucky for everything our family has done for us. From the meals, to the gifts, to spending time with us and sitting with Owen while we take a little break from the hospital, and organizing events and fundraisers, I am not sure how we would do any of this without them. They have all shown so much love and care for us and Owen on this journey.

Living in a hospital is not fun, but we feel so lucky to get to share little moments like this with our little warrior Owen with a new toy he got from Grandma Juju that he loves sing along with and dance. It makes us forget the struggles and just enjoy these precious little moments. 

Taking the Next Step

What a difference a week makes. Owen continued to progress and remain steady on Monday and Tuesday. On Wednesday morning after feeding Owen before I left for work, I said goodbye to the night nurse and asked if she would be back that night. She said she was off until later in the week. I told her thanks and said I would see here later, to which she replied "I don't think you will, you guys are getting transferred to the step down unit today."

It was an awesome way to start the day. Michelle was still sleeping and I couldn't wait for her to find out. She texted me later in complete excitement. This was a big step for Owen and for us and put us one step away from going home. We had just passed the 5 week mark of being at Children's and this was the first time that going home seemed like it was in the near future.

We moved from the B building to the A building at Children's and Michelle informed me that Owen loved going for the ride. They rolled Owen over in his bed to our new room. Besides being closer to home, there are some other perks of being in the step down unit. Our rooms are updated and have a shower, we have a tv from this decade, we are allowed to eat in the room, we have a little more privacy, and Owen is not monitored quite as intense as in the CICU.

Owen was still having his heart rate monitored closely to see if he slipped back into atrial tachycardia. If that were to happen, that would mean it would be back to the CICU for us. Since being over in the step down, Owen has had a couple run ins where is heart rate has been elevated, but it was all during a time when he was either crying, going to the bath room, or throwing up. The doctors reviewed all of the data from these incidents and it he was maintaining his rhythm all the way through. This was great to hear.

Owen seems more alert and more active everyday. He loves to talk to us, listen to music, and play with his toys.

Things continued to progress and on Saturday morning the doctor's informed us that the goal was for us to go home in the next week or two. We are trying not to get too excited, but we are so anxious for the day that we will be able to finally go home.

We also got a little more information on what life will be like between now and Owen's next surgery in a few months. The period between now and then is called the Interstage period. This is a critical period for Owen. The Glenn operation will provide Owen with a much more stable structure and circulation. Until the Glenn, it is imperative that Owen not get sick because it would be a very dangerous situation. Because of this, Owen will have to stay pretty isolated. We know a lot of people have expressed a desire to see and visit Owen, and we want so badly for all of his supporters to meet him, but unfortunately we won't be able to have visitors until after his Glenn when he is more stable.

We would again like to thank everyone that has continued to support us in so many different ways. Cheryl Wolfe, Julia Wallner, Sammy, Jamie, and Axel Ray, and Grandma Friesinger and Uncle Keith
 all sent very nice things to help us and  our little warrior on our journey. We appreciate all the support and prayers from everyone and they have definitely helped us all stay "Owen Strong".

Searching for Stability

It was another week of peaks and valleys for our Little Warrior.  Everyone was working to get Owen's heart on a stable pattern, but the solution was not cut and paste. After the scary episode the previous Saturday night, Owen spent the next day dealing with the tachycardia. It was not as severe as the late night episode, but his atriums were still firing too fast and they needed to slow them down.

They started to settle Monday with a different combination of drugs. At this point, we were literally taking things minute by minute. At any second, he could slip back into another scary episode, so we were happy for each moment that pased that he remained steady.

Tuesday brought us a new worst day of this journey. It was determined that an additional PICC line should be placed to add more access points for his drugs. The procedure was done in our room, but Michelle was not allowed in during it and I was at work, so we did not witness this in person. At the start of the procedure, Owen slipped back into another episode. The doctors informed us that at one point they weren't sure if he had a pulse and pads for the AED machine were placed on his chest to be prepared to give him an electrical shock. He came out of the episode on his own before a shock was needed. We were sick when we found out. We know that his situation is extremely complicated, but we were always positive that he would fight through it and be a normal little boy at some point. This was the first time where we weren't sure if he was going to make it. The doctor told us that she was very worried about Owen. She said there were some patients in the CICU who they aren't all that concerned about, but Owen was not one of them. They tried yet another combination of medicine and left the AED pads on  him just in case. It seemed as nothing was going right. They attempted a PICC line again later that day, but could not find a great location to do it and ended up just placing another IV.  During the procedure, one of the nurses pricked herself with a needle that they used on Owen and because of this, they had to test Owen for HIV. He didn't have HIV, but it was more blood that they had to take from his little body and just increased the stress of the day. The doctors also informed us that it was looking likely that we would be in the hopsital with him until his next surgery in a couple of months. It was a deflating day to say the least, but Owen showed us his strength and remained positive. He kept us focused on doing what we could control and that was giving him all the love we could give.

We had to regroup from such a tough day. Owen did well through the night and seemed to have calmed down. Any bit of good news was welcomed. We didn't concern ourselves with the future and just focused on the present and being with our little warrior. He continued to progress through the week, but it was hard to get excited about anything knowing that he could revert  back to his arrhythmia at any moment. He received another blood transfusion as added support and was receiving supplements to increase his glucose and magnesium levels, as they were dipping at times due to the side effects of the anti-arrhythmia medicine.

Owen was lucky enough to get a little present from Grandma and Grandpa Friesinger that quickly became his new best friend. Sammy the Sea Horse glows and plays music and Owen is completely mesmerized by him.

Owen has still been fighting and entertaining us through this all. He still flashes a smile that will one day drive the ladies crazy. A woman from Occupational Therapy came up to give us some tips on helping Owen developmentally and she was stunned at where he was. He is alert and attentive and interacts with us and the sound of our voices. He loves his mommy and really responds well to her. They have conversations in which Owen responds with his adorable baby sounds. We were extremely happy to hear he was so advanced developmentally. We thought he was just being a normal baby, but apparently he is doing things that they wouldn't expect to see for a few more weeks.

Owen also decided he had had enough of his Arterial line that was going through his left arm and had his left hand and wrist bandaged up and covered with plastic. They were set to remove it on Friday, but Owen felt he knew better, and pulled it out on Thursday.  He was so happy to have both of his hands free and available. He also made friends with Sophie the giraffe and was now able to give her the proper attention.

Friday marked 1 month since Owen was born. It is hard to believe how fast time has gone. Owen went into the weekend doing much better and we were cautiously optimistic that the new drug combination was working. We didn't get our hopes up that we were through it, but it was great to see him so stable. The doctor's were pleased with his progress and noted that he was doing well.

The Friesinger's gave us some much appreciated time off on Saturday night which allowed us to go out to dinner and remember what the real world was like. It was especially nice for Michelle to get out and see her friends Christy and Cara. She continues to be such a fierce mother and has spent the vast majority of the last 4+ weeks in the hospital. It was nice to see her out smiling and being social. It was a well deserved treat.

Sunday started with the doctor during rounds letting us know that Owen had been downgraded from a patient of interest. This meant that they felt pretty good about where he was and he had stabilized. We weren't out of the woods yet and they were taking him off of one of the anti-arrhythmia drugs and he would only be taking one going forward. They wanted to see how he responded to this, but all signs were positive. They also let us know that the goal was for Owen to get transferred to the step down unit by mid-week. That was music to our ears and a far cry from where we were just a few days prior. Owen also had shed the majority of his wires and monitors. His head monitor was gone leaving only his NG tube, the PICC line, and IV line, his heart rate monitor, and is pulseox monitor. Owen was showing his warrior strength and making us so proud.

We are reminded everyday of lucky we are to have the love, care, and support of so many people. We continue to receive things that brighten our day. We have been overwhelmed by the thoughtfulness and generosity of people like Amy and Doug Karpowicz, Heather and Chris Potokar, The Pfleger family, The Hinckley family, The Hambleton's (who sent another piece to Owen's superhero outfit) Mike and Sara Schroder, Emily Lyle and Liz Thelen, my Aunt Mary Ellen and Uncle Dick. We also got some more delicious dinner's from Michelle's Aunt Dar and Uncle Jerry and the Kaniecki's. We are so grateful to all of you for reaching out and being so kind and thoughtful to us. We have appreciated everything from everyone, but it seemed we needed those pick me ups this week more than ever.

I would also like to thank everyone that has supported us through donations. It has been overwhelming seeing the support. Caring for Owen will be demanding, but you all have helped to relieve some of the pressure that we felt trying to figure this all out. We would also like to thank our brother in law, Craig Murphy, who not only started the Gofundme account, but is organizing a Sand Volleyball event in Owen's name on September 6th at the Sandbar in Cincinnati. We are so excited to see everyone who can make it and are really looking forward to what should be a fun day. Craig has been doing all of this while also welcoming his 2nd child, Max James Murphy, in to the world on August 1st with Michelle's sister Jen. We are very excited to have Max join our family and can't wait until Owen, Max, and their slightly older by a few months cousin, Leo start causing trouble together.

A good Sunday got even better due to the acts of a wonderful family and an extraordinary girl. Our family became friends with the Kuehnle family during their brief stay in Cincinnati in the 90's. I quickly became friends with Edward in 2nd and 3rd grade and our families became friends as well. They moved away after our 3rd grade year, but we were so thankful to get to know such a wonderful family. They have been so generous to us with their thoughts and support.  But what happened Sunday was more amazing than we could have ever imagined. Kierstyn was introduced to Owen's story by her Mom, Lauren, and her Grandparents, Ed and Linda. Kierstyn decided that she wanted to help out Owen along his journey. She decided to have a cupcake and lemonade sale to raise some funds and awareness. That alone was so special to us. Kierstyn has such a kind heart to even suggest such a thing. We received a phone call Sunday afternoon from her because she wanted to tell us how her cupcake sale went. Michelle, Owen, and I, as well as my mom and sister who were visiting, were huddled around the phone that was on speaker to here this cute voice tell us about what she did. She could have told us that she didn't sell one cupcake and it still would have meant the world to us that she even thought to do this. She then proudly informed us that her sale raised $2,000. Words cannot describe the emotion in our room. Everyone was crying and completely overwhelmed by this little girl. We will tell this story to Owen so he knows the love and support that he has received and with the hope that Owen will emulate the person that Kierstyn is. Kierstyn is a role model for Owen and for all us and I am not sure we will ever be able to properly thank her and her family for what they have done for us.

Please keep Owen in your thoughts and prayers as we hopefully progress through this week. We are hopeful that the next update will bring good news as Owen continues his fight.

Out of Rhythm

Since Owen arrived over 3 weeks ago, our lives have been chaotic and out of rhythm. There have been so many twists and turns in our quest to get Owen healthy and stable enough to go home. While Michelle and I have been trying to manage our lives without any consistency and rhythm, Owen was faced with one of the scariest obstacles so far, his heart was out of rhythm.

After the weekend where Owen was resting and starting to wake up, he was even more alert Monday and continuing to improve. They removed his chest drainage tubes which made Owen more comfortable and also allowed us to hold him again. He had been showing obvious signs of his desire to be held prior to his tubes coming out, so this was a welcomed development. There were still many wires and tubes to navigate around, but Michelle could not get him out of his bed and into her arms fast enough.

Things were progressing well until Monday afternoon when Owen had his first episode with tachycardia and an irregular heart beat. His pulse would shoot up to close to 300 beats a minute before steadying back down to a normal rate. It would continue to spike for a short period of time and then return to a resting rate. The doctors began to give him some medicine that would even out his heart beat and keep it at a regular rhythm. They explained that one of his atriums was firing very rapidly which was causing the fast hear beat and irregular rhythm. This trend continued through Tuesday evening and each episode brought some frightening moments. Along with the irregular heart beat, his blood pressure would drop and his oxygen saturation levels would drop as well. There was no real answer as to why this was happening, but the doctor's thought/hoped it was being caused by inflammation in the heart from the surgery. The hope was that the medicine would help steady him and his heart would continue to heal from the surgery and we would get it under control. They also explained that the medicine took some time to get to work as it has a long half life. It would take a couple doses to build the medicine up in his system to get to the point where it would consistently work and then it would be given at maintenance levels from that point on.

Tuesday was a tough day for all of us as we watched Owen struggle with this. We so desperately wanted to hear some good news and to see the light at the end of the tunnel that would take us out of the hospital and have Owen back home, but it didn't seem like any of that was on the way or even close.

After Tuesday, Owen slowly started to progress. His heart became stable with the medicine and they were able to slowly turn down his oxygen. It was such a relief to see him react positively to the medicine and to stabilize. He continued to progress a little more each day and on Thursday Owen was allowed to start taking milk again. He also had some more sensors removed, including the one on his forehead. He also got a line taken out of his right arm, which at least freed up one of his arms to move around and grab things.

On Friday, they removed a line that he had in his groin. It was a good sign seeing all these wires being removed from our little warrior. It made it easier for us to hold him and let us know that he was progressing. Now Owen was down to an Arterial line and a PICC line in his left arm, oxygen and a feeding tube in his nose, and the standard sensors on his chest and foot.

The next goal for Owen is to start tolerating his feeds again. He has been a little slow with taking them but has been showing signs of progress. After not eating for almost a week, his stomach needed time to expand.

On Saturday, Owen continued to feed, but we noticed that he was looking a little pale. They drew some blood to check the composition and test the levels to see if everything was ok. It turned out that he was low on some levels in his blood and it was determined that they would need to give him some blood. We were not thrilled about learning that our little warrior needed a blood transfusion, but it was a small amount of blood and it should rejuvenate him and get some color back. In order to do the transfusion, they had to shut down some of the other fluids that he was receiving at the time. About an hour in to the transfusion, Owen had another episode of tachycardia. The transfusion was stopped and he was given some more medicine to try and calm down his heart and get it back in the right rhythm. We had hoped that Owen was passed these, but it wasn't that simple. They weren't sure why he slipped back into it, but the abrupt shut off of his other fluids may have been a contributing factor. His glucose level was very low, along with some other measures so they worked to raise those levels before continuing with the transfusion.

After that episode settled down, Owen took his largest feed by mouth since the surgery of 27 ML's. We were happy to see the progress in his feeding. The doctor's let us know that the determining factor  as to when we could leave the CICU would be when he tolerates his full feeds and they feel that he has stabilized. Owen did show that he was able to breath on his own and the oxygen was removed. It was so nice to get one more thing off of his sweet face. Unfortunately, after the episode, they did have to put the monitor back on his forehead to watch the oxygen in his brain.

Saturday night around midnight, we got our biggest scare to date. Owen slipped back into tachycardia  and this time stayed in it for a couple minutes. There were about 8 people in our room rushing to stabilize him and to calm him down. Doctor's were on the phone and ordering medicines and immediate echo's. It was terrifying to watch and the feeling of helplessness was overwhelming. He finally stabilized and was given some different medicines to lower his heart rate and maintain a consistent rhythm. They aren't exactly sure why Owen is experiencing the tachycardia, but there are numerous doctors thinking about it and trying to figure it out. It seems just when we are full steam ahead on the path to recovery, we have a set back and are left to wonder when Owen will finally get to leave the hospital and go home.

Even with the setbacks, Owen continues to show his warrior spirit and fights through the obstacles in front of him. We continue to recieve such wonderful and thoughtful support from so many people. We have had some more delicious meals from the Killinger's, Nicole Barattieri, and Cheryl Polaski. We have received very special gifts for Owen from Mike and Alicia Graham, Geoff and Marcy Gloeckler, my former coworkers Eric Eaton, Jerry Laffey, Joei Tribble, and Jenna Class, The Dirr's,  Natalie Herrmann, Megan Smith, Angela Tuttle, Abby Spears, and Brigitte Morton, and Justin, Jess, and Andrew Harnist. Each item and word holds a special place in our hearts and helps lift us up when we are feeling down. Thank you all for your continued support and prayers.