Day +317

O my where to begin??? First let me start by saying I am sorry that I do not update like I used to. It seems like I can never find time now that we are home. I keep telling myself that I need to at least twice a week but time slips past me.


Well we just experienced our first fever at home. I must say that the hospital here was not as bad as I thought it would be. Of course I could not get the internet to wor so that is why I did not let everyone know. It started Wenesday night, just as soon as I gave Alicia her meds and she laid down in the bed she started throwing up. She had not been eating for three days prior to that so I was already on guard. She still has very very loose stools but they have been like that for a while now. It seemed like she was never going to stop. She even threw up her Ng tube also. That really upset her because she totally hates getting them put in. She kept trying to put it back in herself but I assured her it was ok and I finally got her settled edown and back in bed. The next morning on thursday Alicia did not have much energy and didn't want to get out of bed. I was already worried about the 13 meds she takes in the morning and with no tube that meant she would have to do them all by mouth. She actually did very well. She chased each med with juice and it only took her around 30 minutes to do them all. I was so relieved about that but I was still worried about the eating issue and no tube to give her feeds. After about an hour and she still didn't get up I went and checked her temp and sure enough it was 103.1. I contacted Cincinnati and Erika came and got us and took us to the Hospital. We didn't have to wait and the directly admitted her which was good. They started her on Antibiotics and drew blood for cultures which are still not back. She has not had a fever for two days so we got to come home. My fingers are crossed that something doesn't grow and we will hae to go back.


She still is not eating and I keep telling her she is going to have to get a tube if she doesn't. She has pinky promised that she will eat so we came home without a tube.

Thank you so much for all of your prayers and cross your fingers that this was just a tummy virus.