Off ECMO & 10 Weeks Old

Aunt Cassie & Cael.

Family Love.

More Family Love.

Our 10 week old fighter!

Baby Cael. <3

Caelin came off ECMO Wednesday evening- the cannulas were pulled out at 4:56 PM. The doctors and nurses prepared us for Caelin to have a night with instability but he did great! Over night and into the morning the one major concern was the pulse in his right foot kept coming and going. There was a decent amount of time that the night nurse could not feel it. She changed the dressing over his Arterial line and site from the cath lab because the old dressings were soaked with blood; after this his pulse returned. Also, his hematocrit and hemoglobin were down a bit so they gave him 80 mL of blood. 

I have to say- the nurses, doctors, and staff are amazing at All Children's hospital. Caelin has had so many people coming into his room just to show him some love and check in on him and us. On Thursday morning alone he had four nurses, three techs, two perfusionists, three cardiologists, the intensivist, the nurse practitioner, the neurologist, the occupational therapist, the physical therapist, and skin team stop in. This does not include all the people who came in and out Monday evening, all day Tuesday, and all day Wednesday offering love, support, and help in any way. We are so blessed for Caelin to be at this hospital for his care.

Thursday morning Cael had a cranial ultrasound that revealed he had a very subtle asymmetrical increase echo in his right temporal lobe which could be possible artifact or due to underlying edema. Despite this, the neurologist, Dr. Andrews, said he has had favorable EEG improvement. This morning at 10:45 AM he had repeat ultrasound but we are still waiting for the results. If the area looks the same or worse, Caelin will be making a trip downstairs to get a CT scan for a better picture. We have not discussed what interventions would be taken if this area is not artifact or if it does not self-correct as Caelin's body heals from his cardiac arrest on Monday.

The doctors wanted Cael to just have a day of stability and as little stimulation as possible on Thursday (yesterday). They did not order an echocardiogram because they wanted to leave him alone as much as possible. So he had an echo this morning at 8:30 AM and we are still waiting for the cardiologist to analyze it and discuss his report with us.

So the changes made yesterday were: his Fentanyl (pain med) was lowered from 3 to 2 mcg/kg, they got rid of his Vec drip (paralytic), increased his HEParin drip (anticoagulant) to 21 units/kg from 17, came down on EPInephrine (adrenaline) to .05 mL from .08, continuing TPN and lipids for nutrition, and he went down to room air on the ventilator (21% oxygen). He had a very stable day and night (into Friday morning). Around 10:00 PM his heart rate lowered, between 110-120, and his oxygen saturation went into the mid 90s. This situation made Mom and Dad very nervous because these were the conditions that started leading to Caelin's heart failing last week. We know his Aorta is still a problem that needs to be addressed soon and we are terrified of history repeating itself. After almost 45 minutes his heart rate went back up into the 120s and his oxygen saturation returned to the 80s. His lactate (checks level of lactic acid- which is a good indication of the heart experiencing stress) test came back at 0.8 which indicates his heart was not under stress. This number combined with the rest of his blood gas results showed that his heart is doing fine. - This was a relief to Mommy & Daddy but it is still something that is being monitored closely.

The only changes today are going down on 26 breaths/minute on the ventilator and 0.03 on EPInephrine. They are keeping his pain medications the way they are because he is actually quite awake on them. He was awake this morning for almost two hours, in addition to being awake on and off through the night. This morning the lights were off and he had his eyes wide open. He was looking all around and even moving his head a little bit. He continues to respond to Mommy and Daddy’s voices. This morning he even started looking back and forth at Mommy on his right side and Daddy on his left. As Mommy talked to him, he looked at her. Then Daddy would talk to Cael and he would move his eyes to focus on him. It is so great seeing Caelin making this progress back to where he was against all odds! Amazing and miraculous are becoming understatements for him- there really are no words to describe Caelin’s personality, triumphs, and how lucky & proud we feel as parents to have him as our son.

Thank you for continuing to pray for Caelin. Every prayer, thought, & bit of positive energy has helped him recover to where he is today and will continue to help him recover!