Hayden Joyner was a 4-week-old, full-term, otherwise healthy baby boy when he got what looked like a minor cold. Forty-eight hours later, Hayden was in respiratory failure. This was the Joyner family's first introduction to respiratory syncytial virus, or RSV. The introduction would land Hayden in Le Bonheur's Intensive Care Unit on a breathing treatment for two weeks
Hayden's mom, Emily, blogged about his illness and hospitalization. Below are some excerpts from her blog and Facebook page.
Hayden update: He had a good night last night. I'm so thankful for even the smallest of victories because those little steps will eventually get us even closer to "all better" status! He still goes through little spells where he wants to breathe over the vent...I like to think he's an overachiever. But they've been able to start weaning the vent, which is a very good thing! This doesn't necessarily mean he'll be off the vent soon, but it's a good thing to have already begun the process.
The doctors have used words like "progress" and "improvement" today. Yay! Those are the words we want to hear. I know we still have a ways to go, but I am all about even the smallest of victories!
During our time here, we've talked a lot about the lack of education on RSV. As a mom, I've heard of it and knew the basics but never in a million years did I realize that a perfectly normal, otherwise healthy, full-term baby could end up this sick. And I don't think I'm alone because we've had more than one person come visit and immediately get choked up and say something along the lines of, "I had no idea he was this sick."
Today has been a good day. This is not to say that we'll be out of here soon, but today has been a good day. As I've said before, I will gladly celebrate even the smallest of victories throughout this process!
Every day during the doctors' rounds we're invited to participate, and I pretty much have at least one question every time. I've never once felt intimidated or nervous about chatting it up with the group. They're always ready, willing and able to not only answer my questions, but answer them in a way that I fully understand what they're telling me.
Have I mentioned the roller coaster of emotions that come with battling RSV (and probably any other illness that brings children to the hospital)? After two or three days of Hayden staying quite comfortable, he was suddenly VERY unhappy. Before this morning, he already had three IVs that had blown, so it broke my heart to think about him needing to go through all that again to get another IV. Then I realized no IV meant he wasn't receiving any of his IV sedatives.
For me, it was a disappointing day. Even though the logical part of me understands this is a process, I was really expecting to be farther along than we are at this point. So yesterday, when there was no real progress of any kind, I was pretty bummed. Today is our 10th day here and Hayden's 9th day on the ventilator. Our doctors keep kindly reminding us (me) that we have to go at Hayden's pace and see what he needs.
Hayden's blood gasses are drawn daily at 4 a.m and 4 p.m. to test his CO2 level and other things, and I'm very, very touched by the people who love him so much and have planned to set alarms at 4 a.m. to wake up and say a special prayer for our sweet boy! So thrilled at his CO2 improvement today and praying for an even lower number at 4 a.m.
Today marks two weeks in the pediatric ICU with Hayden… He's made such a huge improvement from this time two weeks ago, and I feel like we're soooooo close to getting the tube out.
At noon, please say a prayer for Hayden! He'll have a big test, called a cpap trial, where they'll test his breathing on his own without support from the vent. He's doing amazingly well today, and they expect him to do well on this test. If all goes according to plan, we could extubate soon! Oh, I can't wait to cuddle with that sweet baby without all those tubes and cords.
Woohoo! We are officially out of the ICU and on a floor. One step closer to HOME. Praying for continued improvement so our entire little family can be under one roof again!
Guess who smiled at his momma for the first time? Yep! Hayden is getting to be a big boy and probably thinking, "If I start smiling and cooing, will you bust me outta here?"
Macey and Easton finally got to visit Hayden.
Snoozing! Our last obstacle is finishing a full 3 oz. bottle before we can go home. He's been off of O2 for more than 24 hours with no problems, and even though he's been eating consistently all day, they want him to eat more...prayers appreciated for this last thing to accomplish!
Three weeks ago today, we went to the ER with sweet Hayden who was struggling to breathe because of RSV. I am so glad those weeks are behind us and this precious, happy boy is feeling so much better!