January 24th, at noon, we will arrive at Children's hospital. Levi's ENT surgery will begin at 2pm. During this surgery the doctor will be putting in ear tubes and doing a scope of his trachea to determine what needs to be done for his tracheal stenosis. There is a chance nothing will be needed to be done. Please be praying this is the case!
At 3 pm he will be transferred, while still out, to the cath lab. This will last around 3 hours. Then he will be in recovery for an hour and transferred to the heart floor to rest for 6 hours. We had hoped to come home that night but will have to wait and see. If any intervention is done during the cath we will automatically have to stay the night. Also, due to the 6 hours of rest we are talking midnight or so, so they may ask us to stay because of that. If we have the option, we will come home even if it is that late.
Levi will not be able to eat any food after midnight on the 23rd. Since his surgery does not begin until 2pm, this is going to be very hard for Levi, who loves to eat ALL DAY LONG. He also can't afford to lose much weight! Please be praying his tummy feels full and he is not miserable all morning and early afternoon.
We were also told, while the doctors usually let parents stay back with the child until they are put to sleep, this is not the case for Levi. Due to his airway being considered "critical" they will not allow us to be with him while putting him under. This is going to be hard on him and us!
As I was talking to Levi about all the upcoming events his face just fell. He looked very sad and said, "No" then pointed to his heart. He clung onto me and kept saying , "No." As Little as he was I believe he remembers his first surgery in China. Obviously, any heart surgery is going to be painful, but on top of painful he was alone. Now, we were blessed because New Day always sends a nanny with the child to the hospital and this nanny stays with the child. However, in China, nannies are not allowed on the floor until the child is moved down to the regular floor. So, Levi was alone. He woke up to a ventilator alone. He experienced fear and pain alone. Once he was feeling better and moved down to the floor his sweet nanny was there to comfort him. But, until then, nothing. I keep explaining to him Mommy and Daddy will be there with you as soon as you wake up. We will be there the whole time except when you are with the doctor. I am not sure he comprehends this. Please be praying for his peace.
Pray that the ENT and Cardiologists have steady hands and God's wisdom to determine the best treatment for Levi. We also ask that you pray they would find things not as bad as they believe. That God would have already been healing Levi's heart and trachea.
Pray for Samuel who will be at home overnight for the first time without us. That he would also be at peace and feel secure.
On a less serious note, two nights ago I watched a webinar about living life with a single ventricle. Levi has been asking to play soccer because Samuel will be playing this year. I keep telling him I do not believe he will be able to do that but maybe he can help daddy coach. Well, the doctor doing the seminar said that kids can play sports. It has nothing to do with the Fontan it has to do with the strength of the heart and whether or not arrhythmias are present. Well, I went and told Levi he may be able to play soccer and he threw up his arms and yelled, "YAY!!" He was so cute. So excited at the possibility.
So we will meet this surgery head on in hopes that Levi can run, jump, and play soccer like all little boys should!
Thanks for your prayers!
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