THE GLENN!!!!!!

Aunt Cassie putting me to sleep.

Sitting up/ tummy time.

All smiles!

Uncle Tristan.

Family love.

Kisses the night before surgery!

Well today is the big day. The day we have been waiting to come for almost 5 months. Today, Caelin got his Glenn. He went back at 7AM and Mommy received a call at 9AM from the surgical PA, Mary Ann, saying his surgical lines were placed successfully, Dr. Chai began operating, and they were getting ready to put him on bypass. At 10:13 AM we received a call saying Dr. Chai finished operating and Dr. Galas, the cardiologist, was in there measuring pressures and checking everything over. Once he gives the green light, they will close Caelin up, take him off bypass, and begin recovery back in the OR. Then 11 minutes later, Dr. Galas called to inform us everything looks great. At the same time, Mary Ann from the OR was calling Mommy but she didn’t answer. Mommy walked out of the waiting room to find Dr. Galas right outside. So we hung up the phone and began going over Cael’s current position in person. At this time Mary Ann called again to let us know Dr. Chai closed Caelin up and was on his way out speak with us. Dr. Galas told us his part and would let Dr. Chai fill in the details. When Dr. Chai came out, he said everything went straightforward and Caelin was on bypass for less than an hour. He said he really did not have much else to say as he is very pleased with the outcome of his surgery. We are so excited and relieved. We hope Caelin continues to do well with transitioning out of surgery and into recovery. I wanted to write an update now because the plan is for Caelin to come out extubated, which means he will be awake, angry, and in pain so I may not have time to update the blog afterward. I will, however, try to post an update on how Caelin is feeling to Facebook because it is quicker. For those of you who have not yet been to his Facebook page it is www.facebook.com/caelinsjourney .

Just to recap this weeks events:

Everything in the cath lab went perfectly. His pulmonary pressures looked great as did his pulmonary arteries and aorta. The doctors could not see anything on the cath that would explain Caelin’s hypertension or justify his oxygen requirement, expect his shunt tapered. With this, everyone agreed his heart was ready for surgery and to keep the scheduled Friday morning date. He came out extubated and had no issues after the cath- this was a huge relief as the last visit to cath lab was traumatizing.

Caelin having his surgery today came as a complete surprise to us. As most of you know, his surgery was initially scheduled for tomorrow, Friday, August 10^th. Well this past Tuesday, August 7^th, Jenn (a PA) came in to tell us, “There has been a change of plans.” Mommy was the only one at the hospital with Caelin, as Daddy was with Cassie and Tristan at MOSI. Jenn explained to Mom there had been three new babies born, all requiring surgery soon. Because of this, a newborn had to have a more complex surgery (later we found out it is the Norwood) than Caelin’s Glenn, so they were pushing Cael’s surgery back to Tuesday, August 14^th. This was disappointing news and immediately Mommy expressed her frustration. Jenn offered to relay our concerns to Dr. Chai and to leave him a message asking him to call us. Around 5 PM the hospital room phone rang. Mommy went to give the phone to Daddy and he told her to talk to him, that women can be more convincing (as it turns out, he may have been right…). I shared with Dr. Chai all of our valid concerns. At this point, Caelin was on 60% oxygen and had required oxygen support for 4 weeks without the doctors having an explanation. He has had his RA line in for 9 weeks, which has only one working lumen, and with each passing day his risk of infection gets a little bit higher. In four days, Caelin could catch this cold virus that seems to be making its way around recently. His trip to the cath lab back in May was held off a few extra days, which caused his heart to get sicker and be unable to handle a big procedure and therefore, contributed to his heart arresting, requiring 50 minutes of unresponsive CPR, and ending up on ECMO to survive- we did not want to wait for his heart to get worse in any way… we wanted it to be as strong as possible for surgery. We have been at the hospital since Caelin was born, almost five months, and have highly anticipated this day. Once we got this date, we had our heart set on it and it is painful to think it would get pushed back four days. That is four more guaranteed days in the hospital for Caelin and us and we are ready for him to start recovering so he can be stable to come home. Also, Daddy has to return to work next week and he is working at a new school. He would not have been able to be at the hospital with Mommy while Cael was having surgery and this is extremely important to both of us. Thank goodness Dr. Chai listened to Mommy and heard the pleading tone of her voice. He agreed with everything she said and offered to plan to have Caelin be the second case on Friday after the Norwood. Mommy asked if there was any way Caelin could go on Wednesday or Thursday and Dr. Chai said it would not be possible with the schedule. Settling for 50 % chance Cael would be second case on Friday we were upset, disheartened and realistic- no one was a fan of Cael going to surgery on a Friday afternoon. We knew in our heads it would not happen but in our hearts we wanted to believe.

Well, Wednesday afternoon at about 3:00 PM, Jenn came back in saying, “There’s been a slight change in plans.” Sean and I looked at each other pessimistically. Upon these looks Jen blurts out, “Tomorrow.” Struck with disbelief we asked, “Really?” After affirming it, we told Cael the good news and celebrated in our room. A few minutes later, Laurie the nurse practitioner came in to see us. She told us she knew we heard the news because she saw Mom from the hallway and she reminded her of the lady on the Orbitz commercial. Guess Mommy looked a little excited. J We do not know the details of how everything worked out but if it were another child’s surgery that got pushed back, then we do feel bad and hope that child and his/her family is alright. But at the same time, we are the only advocates for our son, he has been here a long time and he needs this surgery before he can progress. We are beyond appreciative for everyone who helped make this schedule work for Cael to get in this morning.

Thank you all for following Caelin’s blog and progress and for loving our son so much. We are grateful for your thoughts, prayers, and positive energy. Thank you, thank you, thank you from the bottom of our hearts!!! We love you!