We moved to the step down unit Tuesday, October 28th. It was great to get out of the CICU and take the next step towards going home. Because nothing has come easy, Owen did not have a good first night. He experienced some more of the desats while he slept that were an issue prior to surgery. This was obviously not a good development. The doctors decided that Owen would have to undergo another sleep study to try and determine what was going on. Owen did much better Wednesday and Thursday and the sleep study was performed Thursday night. Owen had to go through being covered with sensors and watched all the night.The preliminary results from the sleep study were encouraging, but we wouldn't get final results until Monday morning.
Owen celebrated his first Halloween on Friday. We were thinking about what to dress him up as, but Grandma Lulu surprised us with the perfect costume "Owen with a Bee on his nose".
Owen continued to do well and on Saturday morning, we were told that the goal had been set for a Tuesday discharge. This was the third time we got a discharge goal, so we tried to not get our hopes up, but we just couldn't. We knew, this time, we would be going home. We decided not to tell anyone in case it didn't happen, so we kept it a secret from our family all weekend.
Monday morning we got the results from the sleep study that showed Owen still has some sleep apnea. While sleeping, he stops breathing for a short period of time and his brain does not trigger him to breathe right away. Because of this, the doctors decided it would be safer to keep Owen on a small amount of Oxygen while he sleeps. Fortunately, this didn't delay our discharge, it just meant we would be getting Oxygen for him at home.
Tuesday morning arrived and it was all systems go. Our room was packed and ready to go bright and early. We had picked up all of his medicines, arranged for Oxygen delivery, and spoke to the doctors about his care and follow up appointments. Finally, Owen got in his fancy clothes and was ready to see the world.
We said our goodbyes to many of the nurses and doctors that we had developed relationships with over the last coupe of months and headed for the door. It was truly surreal to put him in the car and drive away from the hospital. Mommy sat in the back seat and talked to Owen as he took in all these new experiences.
I don't know if Owen knew he was home or if he just reacted to our faces, but he literally did not stop smiling all day. He got to meet his Cousin Max for the first time and they like each other already.
We went on our first walk outside to get some fresh air.
He got to meet his cousins Josie and Leo for the first time.
And most importantly he got to sleep at home for the first time and not deal with people checking on him every couple of hours and taking temperatures and blood pressures. Owen finally got to feel like a baby.
We would again like to thank everyone who has supported and prayed for us. We recieved a very thoughtful note and gift from Maria Schmitt and we countiue to be overwhelmed by all the thoughts and prayers. This was an ubelievable milestone in our lives and it was such an incredibly happy and sepcial day. This isn't the end of the journey for Owen. He will be undergoing a quick operation to fix his hiatal hernia in the next 4-6 weeks and after that fix we can begin to work on a more normal feed and eventually getting rid of the nasal gastric tube. We have to see the Cardiologists every two weeks to check on how things are progressing. He will have a follow up exam in the next couple of months to see if his sleep apnea has improved and can come off the Oxygen anytime soon. He still has to take a number of medicines. We know our Little Warrior is up for any challenge that will come his way.
Even with all that lies ahead, Tuesday, November, 4th felt like we had won the lottery. We finally got some normalcy in our new life as a family of three.
