by slbowli in
Health Issues
(
Down Syndrome).
On Friday, February 16 2007, the surgeon came into Aiden's PICU room. He was going to try to take Aiden off of ECMO. I was sent to the family waiting room while this was done.
After 30 minutes, I was summoned back to Aiden's room to be led to another room that wasn't being used. There the surgeon told me that Aiden was't able to come off of ECMO; his little heart just wasn't ready to beat on it's own. The decision to leave Aiden on ECMO over the weekend to rest his body was made. We discussed the possiblity of a heart transplant if needed.
If Aiden could not come off of ECMO on Monday, Aiden would be placed on the transplant list and the first surgery, to shunt off the right ventricle would be scheduled. The shunt would buy Aiden 6 months, long enough to get a new heart.
There is a series of surgeries done to completely shut off the right ventricle. However, children with Down syndrome do not like these surgeries. Only 1 in 4 survive. That wasn't good enough odds for me.
Throughout the weekend, Aiden was kept heavily sedated. Not moving, not waking up, not even whimpering.
Monday, my mentor came to visit. Wendy and I were in Aiden's room praying when the surgical team walked in to begin the process of weaning Aiden off of ECMO.
Again, we were sent to the family waiting room. The Dean of Pediatric Cardiology was calling to get Aiden on the transplant list, just in case.
After 45 minutes, I snuck back into the PICU to check of things. The surgeon came out of Aiden's room and told me that Aiden was completely off of ECMO. Aiden had a strong heartbeat and blood pressure was maintaining a great stabilty. Aiden would still remain on the vent however. Did you know that it takes 30% of your energy just to breathe? The surgeon wanted Aiden to rest more and conserve his energy. Also, due to the swelling in Aiden's chest, his surgical site incision would still remain open.
