Still Moving Forward despite a Terrifying Setback

It's the three of us against the world. Together, we can and will do ANYTHING.

Sunday was a good day for Caelin. He went through the whole day with great stats and continued progress. At 11:00 PM the doctors ordered for him to go down to the lowest setting on the respirator. From what the nurses told us, it is more difficult for Caelin to breathe on the lowest setting while intubated than if he were just breathing regularly- this is because while he is intubated, he is breathing regularly but it’s like breathing through a straw with extra pressure. So they had him on this setting from 11:00 PM and planned on extubating him around 10:00AM Moday morning (just after the doctors made their rounds). However, things did not work out this way.

Caelin had been off feeds (breast milk) and all pain meds since 4:00 AM Monday morning to prepare for being extubated. So needless to say, none of us slept from 4:00 on because Caelin was in pain, uncomfortable, and sick of breathing through the tube. So Mommy and Daddy would rotate being at Caelin’s bedside to try and calm him down. He would relax for 5-10 minutes and then start back up again. His breathing went in and out but the nurse said it was normal because of breathing on his own through the tube and feeling so much discomfort and pain. Then at 9:33 AM while Caelin had his right hand wrapped around Mommy’s finger and with Mommy stroking his head with her other hand and singing, “You are My Sunshine,” Mommy watched Caelin turn purple under the bililights and heard every machine beeping as Caelin’s heart rate plummeted and his breathing ceased. The nurse told Mommy to get out of the way as she rushed to pump oxygen back into Caelin’s struggling body. Mommy ran outside of the room and yelled for help while Daddy pressed the red emergency button.

Doctors from every unit came flying into Caelin’s room trying to assess the situtation and bring Caelin back to being stable. While he was barely breathing, the OR staff was contacted and came into the room. The surgeon, Doctor Quintessenza, told us he would have to perform immediate open-heart surgery and asked for our consent. Before he could finish we told him to start right then. We were escorted out of the room and Dr. Quintessenza began his surgery at 9:51 AM. By 10:15 AM the surgery was complete. Dr. Quintessenza made his way out to the consult room where Mommy and Daddy were terrified and anxiously awaiting good news; the surgeon told them Caelin was stable and he was able to remove the blood clot completely. A blood clot had formed above the shunt (the shunt was placed in Caelin’s heart on Wednesday during the first surgery) which prevented any blood flow through the shunt, causing his heart to crash. Around 11:15 AM Mommy and Daddy were allowed back into the room to be with Caelin. We told him that we love him with all our being, that he is the most amazing and strongest person we know, and that we are unbelievably proud of his resilience and determination to keep on fighting.

For the rest of the day and into the night his little body began making progress, but progressed much more slowly compared to Wednesday after his initial surgery and Friday after he got his chest closed. He remained on heavy pain medication, including a paralytic, to keep him comfortable and asleep. He came off the paralytic today (Tuesday) around 11:30 AM and his body is very slowly moving and waking up (it is now 1:30 PM). The doctors tell us this time around the steps toward recovery are most likely going to be slower than immediately following his first surgery but they reassure us that he is still doing well and will recover.

To try to prevent another episode like this one, they increased his Heparin (an anticoagulant) drip and he is receiving aspirin. Combined, these should help prevent blood clots in wrong areas, specifically above his shunt. Also, the pediatric cardiologist and the surgeon have been discussing the possibility of inserting a stint to help make the shunt more stable and further prevent a blood clot above the shunt. Over the next few days, they are going to track Caelin’s progress and weigh the risks against the benefits to decide whether or not it is the right decision.

Caelin is such a fighter, but even the most powerful warrior needs support, so we thank you! We thank you all for your continued positive energy, reassurance, thoughts, and prayers and more for our little boy.