Wednesday, June 26, 2013


After being extubated yesterday morning and doing great for several hours, Hayden was transferred out of the PICU and to the surgery floor for continued monitoring. Once we arrived there, he was fine for an hour or two, but then he started to go downhill. It began with him being a little more agitated than he was earlier in the day and his breathing became very loud and sounded obstructed. Over a period of 5 hours, he was given pain medication, which did nothing for him. Finally, after feeling like the nurse and dr who checked on him several times weren't taking his conditions/symptoms seriously, Hayden's face started to swell up. At this point, "father knows best" came out in me and took it to the next level. I am not sure what his name was, or where he fit in on the "food chain." but he took one look at Hayden and said he agreed with me and told the nurse to call "rapid response." Rapid response is pretty much a call for help where doctors and nurses from several floors/specialties all respond.
We experienced this in April, the night of his hernia surgery, but it wasn't very rapid. Last night, it was rapid. Thankfully so as well.

His room quickly filled with 10-12 doctors and nurses who quickly assessed him. The surgeon ordered chest and abdomen x-rays while the Pediatric doctor prepared him to be transported back to the PICU. Kelsea was back sleeping in the room and I called her and as softly as I could, told her she needed to slowly wake up and head back to the 10th floor (surgery recovery floor). The pediatric doctor made dad VERY happy with the next decision. X-ray was coming into Hayden's room and the doctor knew he was struggling. He said x-rays could wait and said it was more important to get him back to the PICU. As soon as he got to the PICU, he needed to be intubated again. At the same time, he started to vomit and aspirated a little. They are monitoring that and will stay on top of that.

At 3:30, Kelsea and I got a little bit of sleep. I was back in his room again by 6:30 and Hayden was doing good and sleeping peacefully. About 7:30, after rounds, his heart rate dropped as well as his oxygen saturation. It brought the attention of MANY nurses and doctors again. They unhooked the vent and hooked up the "bag" to manually give him breaths. I can't say it enough about every single person involved in his care at Children's and how amazing they are. However, I have to give a shout out to Eugene (today) and Michelle (yesterday), the respiratory therapists who manually pumped the bag to give him his breaths for close to 15 minutes until his levels came back up to normal. It was a very emotional time and I am not sure if it was me being scared or me being grateful to see somebody single handedly keep your son breathing with their hands. Pretty powerful stuff, and every single person in his room, all 15 of them, took it in stride as if it was no big deal. I wanted to give each and every single one of them a high five and a bear hug. However, they probably didn't want a crying 34 year old to hang all over them!

Hayden is going to be kept on the vent and monitored and will be reevaluated tomorrow. He will also have a PICC line put back in so he can get his nutrients since he hasn't eaten in several days. So much for the little bit of hair that he grew back on the side of his head for the past 4 months! Oh well. I think there are more important things to worry about....or not worry about!

I know many people are following Hayden's progress and I will try to continue to update as much as possible. Kelsea and I are struggling, not going to lie, but we are doing good. It's a rough patch, something that we really haven't had to deal with Hayden. We are still blessed and it is still in God's hands.

Hayden was also extremely happy to see one of his favorite NICU nurses and LOVES the gift that she brought him.
We also felt very lucky to meet Alex and Joe DiFranco yesterday (Frank the Tank's parents) who have also documented their journey with Frankie's Omphalocele at Baby Frankie's Journey. His omphalocele closure surgery was just 24 hours after Hayden's and is now Hayden's neighbor.


  1. Hayden's update + emotional O mommy = tears running down the cheeks. What a trying and emotional 24 hours you have had. I am glad he is doing okay again. I wish I could just give you guys big hugs and take some burden off your shoulders. Thank God for doctors and nurses and techs and technology! For our kids, it is the difference between life and death. So thankful for Hayden's life!

  2. Hayden is beautiful and fine and strong, all the things his parent's love for him is. I'm praying for all three of you. I wholeheartedly appreciate your inspiring words and thank you for sharing your very real 'story' reminding us all how truly indomitable is the human spirit, the human will to love. God bless your entire family!