After nearly a month in the hospital, we are finally all home and together. It was so good to get home, but I must admit it is also a little scary to leave the constant care of nurses and Dr.'s. Levi was so excited that Lukey was home, he tore up the stairs and into his room to see him. Lukey's face just lit up with a huge smile. They have a very special relationship and Ben and I don't realize the toll it takes on them too. Levi has a very hard time when Lukey is in the hospital.
Upon our arrival back at home, we were faced with new challenges. Like getting the feeding pump working properly. I almost lost my mind. I felt serious rage towards that feeding pump. I left my directions for making a huge batch of Ele-care formula at the hospital, so I had to go by memory with the measurements. It was definitely a first night back. A little stressful, but so nice. Lukey is on so many medications. It starts at 6am and the last one of the day is given at 11pm. It's something we just have to get used to. With my brain only functioning at 70%, I just have to follow my med schedule. As time goes by, he should go down to 1-3 meds. He will always take them though. The Prograf is what they call his Lifeline. It is what he will take for the rest of his life to avoid liver rejection.
We will have to go into the clinic at Georgetown 2-3 times a week for a few months. We are also getting ready for Lukey to start back on the chemo. By the beginning of next week I'm thinking. We will find out tomorrow. We are almost there. Two more rounds of chemo and my little man will be done with it.
All we need now is to get Lukey to eat on his own. He is still throwing up and not wanting to take anything by mouth. They moved his feeding tube down into his small intestine, so he doesn't throw up formula anymore, just phlegm. He is so congested in his head that he swallows everything, then throws it up. He is also on breathing treatments to help with the congestion. I really want him to eat. The feeding pump is such a major hassle. Please pray Lukey starts eating again. Otherwise, he is doing great. His liver function is really good. We are just so blessed and thankful that saying thank you seems like not enough anymore. We could not get through this without you. You all have done something that has made this time easier. We are all incredibly exhausted and hoping to catch up on some rest before starting chemo. I have just one more med to give and I need to start his new feeds back up, then it is night night for me. I sure hope Lukey sleeps tonight. He took a very long nap today and I was able to do all the laundry and clean up. Tonight, I just want to sleep.
A quick update on my pregnancy. I am 16 weeks along and I heard the baby's heartbeat today and saw (her) moving all around. (She) is a wild one. I don't know that it is a girl. But I Believe!!
Happy and Blessed New Year to you all. Thank you for keeping us in your prayers. We love and appreciate every one of you.