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.
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.
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