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.
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.
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