It's been along 3 days. We have come to the realization that we have to go with a moto "live each day to the fullest" So that is what we are doing. We are letting eli live his life to the fullest as much as we can. By letting him go out and enjoy the world. Protecting him as much as we can however letting him enjoy life. We also have put that moto into our lives. Heather and I have decided to get married this Sunday. Right here at the hospital. We love each other so much. We were going to do it in the summer fall time. however with eli and all of his medical conditions and after having multiple "talks" with his doctors we have decided that we are going to do it early. We want all of our kids to be with us on this special day.We are living each day to the fullest.
Tuesday was very hard.Eli was super fussy all day. Nothing made him happy. Heather tried everything Eli's nuero came by late Tuesday night. We talked for quite of bit of time and we discussed the possibility of MITO. He seemed to be pretty sure that's what is was.He ordered some blood test to due a preliminary for MITO it will take about 2 to 3 days to get the test back. He was going to do a physical however Eli was sleeping. He was very informative. He was very confident in what he had to say. He made us very comfortable. His nuero says after the blood work if it comes back positive then a muscle biopsy. We would have to go to Atlanta for it.
Wednesday was a very busy day for Eli, He had many visitors.A family friend came up and gave him a really cool cube. Eli loves it we roll it too each other and he laughs like crazy. It's so cute. Also his case worker came up for a bit to look at his chart and get some updates. His home health nurse Paula came up to hang out with him. He loves his paula.The neurologist came back and did a full physical on Eli. We also asked some more questions about the test he says if it comes back not being MITO then we need to do a spinal tap to check for some nuero transmitter type of disease. Sorry i can't remember what it is called. He also had one of mommies friends come up and give him some clothes and blankets. He so loves the warmth of the clothes and we love them it makes it harder for him to get at his tubes. We also had a new friend come up. She brought up some toys and books. We talked to her for a long time. It was nice to have company. Heather got to go home to see the 4 older kids. They sent me a video telling me that they missed and loved me. It almost made me cry. I miss them very much.I miss home. I miss what we would call normalcy.
Thursday... hmm well Thursday has been very interesting. The doctor came in and said that she wanted to turn off his TPN and his IV fluids.Hmmm we said that makes no since to cut over fifty percent of his fluids when he is still dehydrated. We went back and forth with her she then said we will just start with the TPN slowly. We were not super thrilled with that option. She left the room. PT came for Eli today and she played with the blocks that our new friend brought up. She says that he looks great and is doing very well. Some positive to the day. The only thing is that the reason for him doing so well is that he is well hydrated. He is drooling for the first time ever. His lips aren't as dry as they used to be, We see tears when he cries. This is with almost double the amount of fluids at home. Which so far we can't figure out how to do it at home without TPN and IV. We then talked to the nurse about the frustrations we had and she said that she would talk to the doctor and get a dietitian to come up and see him. Heather and I were both not jumping for joy. Due to the fact that all they seem to be doing is using a text book guide on how to help a child who is sick and they are trying to do it all by the numbers. The problem is Eli didn't read that book when he was born so he doesn't really follow the text books.HEHEHE. The nurse came in and said we are going to keep everything the same except up his feeds a bit and reduce his TPN. We said ok. The dietitian came in she was real nice. She started out with the numbers game just as we thought.However she listen to us and realized Eli is not a normal child and he doesn't fit that chapter of that book either. She explained to us that it made since to have eli go home with the TPN and the IV to help with the dehydration and slowly increase his feeds to where he could slow get off both. She said that she would talk to the doctor and put it into his file. She said she didn't know if it would help or not however she would do her best to help us. I believe she will. The doctor probably isn't overly thrilled with us but i don't care. Our nurse,dietitian,and his pediatrician all support what we want to do. We will just see how tomorrow will go. i will do my best to keep it updated so it's not so long next time