God Gave Me You

Aunt Cassie!

<3 Family!!!

Back to the binky! :)

Cuddle Time- Wednesday 5/30

Yesterday afternoon, Dr. Nardell (cardiologist), Dr. Wilmot (cardiologist and transplant doctor), Laurie (Nurse Practitioner-CVICU) and Diane (Nurse Practitioner-transplant) all came in to Caelin's room to discuss the results of his follow up MRI and his next surgery. Mommy was only expected Dr. Nardell to come in to give her an update and therefore was unprepared when they all came in to provide information overload.


So they first discussed the MRI- it is clear. His brain still shows no damage from his cardiac arrest and CPR. With these results, they spoke with the neurologist, Dr. Andrews, and got Cael clear for open-heart surgery next week. They did not want to do surgery too soon because they want his brain and the rest of his body to heal a little before they put it through another surgery. 


The next thing they discussed was the scheduled surgery. Caelin was on the books for Wednesday, June 6th but Dr. Nardell does not want to wait those couple extra days and ask Caelin's heart to continue to work so hard. With this thought, she asked Dr. Chai, Caelin's heart surgeon, if he could change his schedule to have the procedure done on Monday. Dr. Chai was able to make this happen, so Caelin will be getting his third open-heart surgery on Monday, June 4th. They have not scheduled a time yet but it will most likely be in the morning (between 9 and 10). Dr. Nardell explained to Mommy the decision for how Cael's surgery will be addressed: they will re-open his chest and go in from the front as opposed to the side to get a better view and have the best chance possible of fixing the Aorta. Also, they will put him on bypass because it is safer for his heart and this surgery; but the surgery should not take as long as the Norwood so he will not be on bypass for as long. 


After Mommy agreed with the doctors' decisions and asked a question or two, they disclosed their concerns and addressed all the "What ifs." This is the part Mom had not planned for. Had she known they were going to travel over these bridges and down these dark alleys, Mommy would not have spoken to them without Daddy's presence. She wishes the doctors would have offered to come back later when Dad was around, knowing the information they were going to share with me was the heaviest it could be. Although the doctors want to believe the surgery will be successful and help Caelin's heart function get back to normal, they know his body has a history of being unpredictable and they want to be as prepared as possible, as well as prepare us. They talked about the chance of Caelin coming out of surgery on ECMO if his heart is not immediately responsive to the surgery or he experiences complications. They discussed how long they would leave him on ECMO if his heart does not improve before putting him on other life-support devices, such as VAD (Ventricular Assist Device), and on the transplant list. They started to get into details of how getting him on the transplant list works and common things that prevent kids from being a good candidate. They began to explain how having a child with a transplanted heart can affect the whole family. At this point Mommy said that we could talk about those details if it became necessary. Afterward, the doctors commented on how we may be faced with making life decisions and they even said if we were not interested in putting Caelin on the transplant list if he had no other options, then it is not something we have to do. That we can say, "Enough is enough." Well they are wrong, because there will never be a point where "Enough is enough" because our little boy is a fighter, a warrior- he has shown that he wants to fight to live and he is determined to continue to fight to live. And we will help him do that by any means necessary.


After this discussion, Mommy felt like the doctors were pessimistic about the procedure to fix his coarc to improve his heart function. She started getting nervous and allowed her mind to travel down those heartwrenching paths. She expressed some concern to the head nurse of the unit, Susan. Susan asked Dr. Nardell to come back to talk to Mom. Mommy told Dr. Nardell that she felt like the doctors have a high concern the surgery will not fix his heart. Dr. Nardell reassured Mommy that was not the case, that they just want to plan for the worst because Caelin's body is complex and unpredictable and it is better to have everyone prepared than scrambling in an emergency. This made Mommy feel a little better but still nervous. Wanting everything done to the best of their ability, Mommy asked Dr. Nardell if Dr. Quintessenza (head heart surgeon who did Caelin's emergency bed-side reopening to remove the clot from his shunt on March 26th) could do the surgery. We realize Dr. Chai has an advantage with the surgery because he did Caelin's Norwood; however, Dr. Q has been around for longer, has more experience, and we have seen his passion for his patients. Dr. Chai primarily does cases in Tampa at St. Joes. Dr. Nardell listened to Mommy's concerns and agreed that Dr. Chai has an advantage and Dr. Q has been around for longer. But she also informed Mommy that Dr. Chai trained under arguably one of the best surgeons in the world who specialized in HLHS. With that said, she offered to talk to Dr. Q to see if his schedule allows for him to be in the operating room with Caelin and Dr. Chai. Apparently sometimes they have two surgeons in one case if the availability is there and it is beneficial for both of them. At this point Daddy arrived, and we told her that we would greatly appreciate that. She also offered to ask Dr. Q to stop in to talk to us and we told her that would be great. So hopefully within the next couple of days Dr. Q will be able to stop in to talk to us and tell us that he can be in the OR with Caelin.


With all that being said, Caelin has been pretty stable. His numbers are great, except his blood pressures are a little high and his heart rate fluctuates from the 120s to the 170s. He will be receiving an echocardiogram this morning and another over the weekend to monitor his heart function. His heart function does look better than it did right before ECMO and while on ECMO; however, it is not completely recovered. And its abnormal function is what is concerning to the doctors and us.


Caelin is our little miracle sent from heaven and I believe he was given to us so we could help him get through these ups and downs. God gave us Cael and He gave Cael us. Please continue to pray for our little warrior as he still has an immense amount of healing and recovery do. 




As a side note, the All Children's Hospital Telethon is this Sunday, June 3rd, 2012. This is a live localized televised event on News Channel 8 and CW 6. Apparently the news crew comes into the units and interviews one or two patients live. Since the children in the CVICU currently are so young, Susan (the head RN of CVICU) asked me, Mommy, to be a spokesperson/interviewee and share Caelin's story. She said that Caelin is, "Our little miracle baby," and she would love for me to speak on his behalf. I am honored and excited to share Caelin's story! If you are interested in donating and do not have access to the televised event, you can go to All Children's Telethon Website and make a donation.