Surgery #3: Reconstructing Aortic Arch

So sweet <3

Family photo before the Telethon interview.

Caelin cuddling with Daddy before the OR.

Monday morning... Caelin falling asleep on Mommy's chest before heading to the OR.

Family photo before Caelin's 3rd surgery.

See you later kisses from Daddy.

Mommy reminding Cael to be strong and behave.

Resisting the ridiculous amount of pain killers.

Caelin after surgery.

Caelin hooked up to the ventilator, Somanetics, and all his lines.

Yesterday was the All Children's Telethon. The total amount of donations given was $3,745,402! What an amazing amount. Caelin did get to make his television debut; however, he was sleeping the whole time! haha It is probably better this way because he may have been overstimulated and upset with all the people and bright lights in his room. The interview was short and we weren't able to hear the dialogue between Jennifer (newswoman in our room) and the other news person so we were not always sure when it was appropriate to talk but nonetheless, we were able to share part of Caelin's story with Telethon viewers. The interview will be on YouTube in a couple weeks but you can look at pictures right now on All Children's Website. 


While the cameras were there we were happy to share Cael's story but after they left, the reality of his next surgery being 18 hours away set in. Fear and anxiety crept into our minds and, despite being overshadowed by hope and faith at times, found no escape. These feelings carried into this morning and afternoon. Mommy and Daddy spent all their time with Caelin until 8:25 AM when he was wheeled back into the OR. We could tell over the past couple of days that Cael was rather quickly becoming more lethargic, sleepy, and distant and although we were scared for him to undergo his 3rd open-heart surgery in 10 weeks, we knew it was what had to be done to help his heart and it needed to be done now.


Caelin fell asleep on Mommy's chest before being placed in his bed and rolled to the OR. Luckily for all involved, he remained voluntarily sleeping until he was given anesthesia. In front of the double doors, Daddy kissed Caelin and gave him a loving pep talk. Then it was Mommy's turn and separation anxiety took over her body. It took everything she had not to have an emotional breakdown then and there. In fact, the only thing that kept her from losing it was knowing she needed to be strong for her little boy who had no choice but to be strong. So she kissed him, gave him words of encouragement and faith, reminded him of how many people love him and are praying for him, and said, "I love you" at least a dozen times. With that, we put our trust, faith, and Caelin's life in the hands of the surgeons, their team, and God. 


From 8:45 until 4:20 PM we anxiously awaited updates in the family CVICU waiting room from the OR. We received our first update at 10:11AM from the nurse saying Dr. Chai had just started the procedure. They had to wait for the Monday morning conference to be over, get him under the anesthesia, restart his necessary medicines, put in a peripheral IV, and replace his femoral Central and Arterial lines. We then received four more calls, at 11:07 AM, 12:37 PM, 1:24 PM, and 2:02 PM, updating us on Dr. Chai's progress and Caelin's stability and tolerance. At 2:02 PM the nurse informed us Dr. Chai had just closed Cael's chest and would be coming out to speak with us soon. Caelin returned to his room at 2:50 PM but we were not allowed to go back until 4:20 PM. During this hour and a half the surgical and nursing staff worked together to get Caelin stable in his room and lower his blood pressure. Also, they gave him the maximum amount of Fentanyl and Morphine they could to get him to settle and be comfortable. But being the resilient warrior that he is, nothing can keep him down... he refused to succumb to the potent drugs. The anesthesiologist commented that he had given Cael enough pain medication to knock out an adult. The nurses were joking that he takes more pain medication to be sedated than does a horse. With that, Daddy told the nurses that they may want to contact a veterinarian when Cael comes in for his Glen.


We are thankful Caelin did not have to come out on ECMO; however, if his heart function does not improve he may need to go on it for a day or two to let his heart rest. Coming right out of surgery, the function of Caelin's heart was worse than it was going in. Dr. Chai had forewarned us this may happen as a temporary response to the change in pressures and undergoing the stress of the procedure. Caelin had to be on bypass for 137 minutes and his body had to be cooled through a careful process. Because of this, his recovery in the OR took a little longer. Caelin received an echocardiogram around 5:00 PM to make sure there was no fluid developing around his heart. The echo showed there is no fluid around his heart and the function had improved slightly from where it was before surgery. Although Cael still has a long road of recovery, making it through surgery and his heart function showing slight improvement are good steps in the right direction. 


They are closely monitoring his numbers and managing them to get them back to normal. Right now, his blood pressures are still a little high, his CO2 output is low, his O2 level is low, his pH level is high, and his lactic acid is high- these are all things that need to be closely watched and continuously treated with manipulating medications, ventilator settings, and such. Hopefully these numbers balance out a little over night and head in the right direction.


As always, thank you for your thoughts, prayers, positivity, support and encouraging/inspirational words. We appreciate them more than you know. And we know Caelin can feel every little bit from you all. We love you!