Owen slowed his feeding down a little bit after his great day on Wednesday. He started to wear down after drinking for a short period of time. This what the doctor's expected. Based on his oxygen saturation levels and the MRI last week, Owen was getting 2.5x as much blood to his lungs as he should. The slow eating and faster breathing was a sign of heart failure. They explained to us that heart failure doesn't mean his heart itself is failing, but the circulation from his heart was out of balance and he was getting more blood to his lungs and less to his body.
Owen did not let this alter his attitude. He was still smiling, cuddling, and entertaining his family and nurses. He was showing some of his fighting attitude as well. In an act of defiance, he ripped out his NG tube Thursday night and does not seem to be impressed with it.
Poor Michelle was up all night worrying about Owen and watching the unpleasant process of the nurses putting the NG tube pack in. She continues to be incredibly strong and brave in caring for her little sweetheart. Sleep was at a premium as Owen was born with Michelle's trait of not wanting to go to bed and stay up all night, so Owen and I decided to give her Friday night off to go home and sleep in our bed. We had a boys night and decided to have a flexing contest to see who had the bigger muscles. It was too close to call.
On Saturday, we were informed that we would be transferred to the step down unit. Owen was very stable and they felt that he would be able to move and not receive as much supervision as he was getting in the CICU. We moved Saturday afternoon and started to settle in. They let us know that they still weren't sure of the next step, but it was almost assured that Owen would need the first surgery sooner rather than later.
Our goal is to get Owen home as soon as possible, so the open answers we were getting on the timeline made things a little more difficult. We understood that they wanted to do what was best for Owen, but we selfishly wanted to get out of the hospital and get home. Living in a hospital is about as fun as it sounds.
We were informed that we would be able to bring in some of Owen's toys and some clothes if we wanted to. We were excited to do this because we want Owen to have the same experiences as a normal kid. He has loved wearing his outfits and his favorite toy has been the momaroo. He loves sitting in their and it seems to do the trick of putting him to sleep (which makes it our favorite toy).
We continue to receive incredible and unexpected acts of kindness and support. We would be remiss not to mention our families again. They have been frequent visitors and have gone above and beyond to support us in this difficult time. We are so lucky to have two families that care so much and have everyone right here with us. We continued to be blessed by the kindness of so many people. We received an unbelievable gift basket from Ali Stigler, more meal cards from the Kilduff family, some toys and clothes from the Jutte's, and Owen's first Xavier outfit from his Great aunt and uncle and cousins. We also had a delicious meal from the Hambleton family that offered a much needed break from hospital food and carryout. I would also like to thank again everyone who contributed to the care packages we received. They have made thins so much easier. We have toiletries, pillows, blankets, snacks, books, and games that we can keep in our room at the hospital. Thank you to everyone who participated. It was a long list of people and we so greatly appreciate what each and every one of you have done for us.
We were informed late on Monday that it had been decided that Owen would have his first surgery on Thursday, July 24 at 7:30 am. He was going to have PA band surgery and pulmonary vein repair. The band will restrict the blood flow to his lungs and should allow him to breath easier and eat better. The vein repair will improve his circulation. It is so difficult to look at this little guy and know what he has ahead of him.
It makes things easier knowing that he is in great hands. Dr. Morales is as good as it gets in performing these operations and we know that he will take care of our little warrior and make him better than ever. Please keep the surgeons, doctors, and nurses in your thoughts and prayers along with us and out little warrior. We will need to summon all the strength we have over these next couple of days to support Owen. Owen will be a true warrior and he let's us know that he isn't scared.
i was introduced to your blog through a friend. my son, jackson, was also born with a congenital heart defect. jackson was born at cincinnati children's and received the absolute best care. he had a procedure right away, and then open heart surgery 9 days later. over a year later, he is growing and thriving and doing wonderfully! your little warrior is in the very best hands. the cicu is an incredible place. dr morales also did jackson's surgery. he really is in the best hands. these little guys are much tougher than we ever think they are. all of you are in my thoughts and prayers. i look forward to reading more about owen.
ReplyDeleteHi Amanda - thank you so much for reading and sharing your story!
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