“Except our own thoughts, there is nothing absolutely in our power.”Rene Descartes
As we are getting closer to Wednesday I thought we should share more of what we understand about the upcoming procedure.
Amy had more time to speak with the doctors regarding surgery last weekend.
The current game plan is for surgery to be this Wednesday, May 29th, at about 9 am. This is going to be an all day surgery. The doctor described that John Lee has 3 Mapcas (abnormal arteries) that they will connect to a conduit to centralize blood flow. They are anticipating this to regulate the amount of blood flow out of the heart to the lungs. The conduit will have a valve for blood flow regulation.
They also anticipate fixing the missing wall between the bottom two chambers of his heart. But they will not know for sure until they do the flow study during surgery. This will show them how the blood is pumping and if his heart needs the wall fixed now or later.
During this talk we came to realize that John Lee will be having many surgeries during his childhood. The conduit they will be putting in will not grow with his anatomy. So of course it will need to be replaced as he gets bigger. The doctors reassured that they will try to give him the longest stretch possible between surgeries. They do this by essentially putting a conduit in that is slightly too big and letting him “grow into it.”
Our nurse today prepared Amy that he will have many more lines and IVs when he comes out of surgery. John will also either be heavily sedated or paralyzed for a day or two while he recovers so that he does not move too much. There will be lines coming out of his chest that measure the pressure in his heart. She reassured that those lines and IVs will gradually be taken out each day, so it will not be long before we are able to hold him again.
We are thankful for your uplifting messages and prayers. Please continue to keep us in your prayers. Some items on our minds and hearts are: we hope that John Lee is safe from infections. We also understand that we are in very capable hands and minds here in Stanford. We are still praying for wisdom for the doctors, surgeons, and everyone involved in John Lee’s care. Last, we hope that we remain healthy. Our health is important for our stay at the Ronald McDonald House.
Loren and Sue went back to Temecula this afternoon. It was great to have them around. They have been instrumental in providing us much needed family–they reunited us with our first born, and are the closest family we have. We will miss them until we see them again soon.
As of today it has been 2 weeks since we have held John Lee. This is understandably very painful for a new mother’s heart. Any new mom wants to hold her newborn, care for them, bond. But that is very difficult when baby is in the hospital. So the bonding process has to be more creative. The nurses allowed Amy to be apart of his care last night. She was able to bath him, change his diaper, clean his mouth, and help change his bedding. This all sounds so basic. But it meant so much. Something we have been learning is to take joy in little thing, in small victories. Being able to wipe the sticky goo off his skin left from bandages brought so much joy.