Thursday we were discharged. We were not able to bring home any additional fluids. He was so sensory overloaded during the leave of the hospital. We were going to the car and something fell off the cart and he just cried. Heather and I tried to comfort him with very little success. We got home and saw the family. We then layed him down in his bed and all he would do is cry. I felt so bad for him I went into his room and talked to him. Heather went in and held him. Nothing seem to work. He finally fell asleep about 9:00pm
Friday... Our little man woke up and then fell back to sleep for 4 hrs it was not like him. We figured we would let him sleep.Since we thought that it was his way getting back to norm. He then got up and played all day. He was doing pretty well. He got a low grade fever and we put him to bed and he seemed to be doing pretty well.
Saturday... Eli seemed to be not himself. He was more tired than the day before and kept having a low grade fever thru out the day. Heather and I thought it was ok to go out since he didn't have any fever for awhile before we left. We went out to dinner and we just hung out it was nice. All thanks to our friends for the gift card. We got home and his heart rate had been up for awhile and he had a fever. It looked like the tylenol and ibuprofen wasn't working. Paula his nurse called the on call and he suggested with his heart rate that he go to the ER. Heather and Paula took him to the ER and the doctors seemed to be really good. They said that it was an infection and that it was safe for him to go to his appointment in KC.
Sunday...Heather and Paula came up to kanasa city. He was having some troubles keeping his stats up so they put him on oxygen when they were in the car. Otherwise he seemed pretty good. They checked into Ronald Mcdonald House. Really nice can't say anything bad about them. About 5pm is when all hell broke loose. Eli's oxygen went down into the 70's. he was retching and shaking. Things got worse. They had to call 911. In about 10 minutes they had a room full of people. I got a call and less than 45 minutes I was out the door. It was one of the longest drives I could ever made. My phone was nearly dead. Every so often some song would make me tear up. It's was very emotional. I got to the hospital in the best time ever. I saw heather,eli,paula, and a friend of the family. They were still in the er. He reached out for me. I almost cried. It's crazy how emotions run like a roller coaster.