“Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.”
C.S. Lewis
Warning: some of the pictures are graphic for sensitive readers
It has been a wild two days since the last update. Last night I went to put Henry in bed with hopes of switching with Amy visiting John Lee at the hospital. I did up Henry to sleep, but I also passed out. I do not remember when Amy came back. That went the update.
It kind of occurred to me how stressed we have been as the days go-by. I have had a headache. A rare occurrence. The day started off with me walking to the hospital to make sure everything was in order before John Lee was taken in for his procedure. At the hospital his nurse game an update of what was expected that morning, the anesthesiologist talked with me about the procedure. He said:
- It will take 10-20 hours
- He will be under and comfortable the entirety of it
- It is common not to close the chest after the procedure
- He will be very sick after the operation
- He will not look great
- He (the anesthesiologist) was from Zimbabwe
Then we talked about random things that are happening in the Malawi-Zimbabwe region. It is amazing how calming this was—therapy from my African brother.
Soon after they wheeled John Lee off and I went back to Amy and Henry. We would later receive intermittent updates about the procedure over the phone. He was doing well.
That morning my brother from another mother, Cody and his wife, Heidi and daughter, Georgia arrived. We soon were off to downtown Palo Alto. I cannot express enough how instrumental their presence has been. They have ministered to us greatly. Having them around during the period of the surgery helped both Amy and me not think, or worry much about the surgery.
About 9 hours later we got a call from the hospital. It only said to got the front desk at the hospital, the surgeon would like to speak with us. We left for the hospital right away not knowing what to expect. When we got to the hospital the gentleman at the family center took us to a consultation room where we waited for perhaps 20 minutes. He later came back and apologized that we are supposed to go to John Lee’s ICU room. When we got there the surgeon told us that the procedure went well and they were able to connect the MAPCAS to the conduit with ease. They were also able to close the hole between the chambers. He went back to finish but called us to let us know that they will not be closing his chest up for another few days to let the swelling go down.
This is great news! All the possible best outcomes have been accomplished. Currently John Lee is lying in with his chest open (covered with a plastic membrane). We can see his heart beating. There are a lot more apparatus to help him get better, but this is expected. We are amazed at the care and expertise around us.
Today we have been updated further that they are more likely to close him up over the weekend. His organs are doing well. We were also expecting him to be under paralytics but he is not as they are observing that he is doing great. He is wearing a hat to that monitors brain activity. They are not concerned for him as he is showing great progress. It is standard for a baby his age.
We are thankful.
Today we spent more time with Cody, Heidi, and Georgia. It has been great to hold baby Georgia and listen to a baby cry. Henry has had awesome time wrestling his uncle Cody…and the cars. We also had not met baby Georgia before yesterday. She was born a week before John Lee. A lot has happened since then. We are glad they brought her up to us.
We are witnesses to amazing events. We were expecting a very long surgery (10-20 hours), it was complete in less than nine. The were expecting the doctors to only fix the pulmonary issue and fix the hole in the chamber at a later date–both issues where fixed.
We still have to take it one day at a time and I cannot get used to seeing my son laying with an open chest. We have hope beyond what we can see now. This has been John Lee’s music since just after birth.
Kufa Family 