Status Updates‎ > ‎

May 18th

posted May 18, 2010, 9:32 PM by Sean Molby

Sorry we have not posted in a while. Sean has been super busy with the move and I have barely had time to breathe with taking care of Ella and Tristan- I am now in charge of his day to day care with assistance from the nurses only when needed- and then also dealing with all the appointments, meetings, and trainings daily.


Tristan is doing a little better. He has had a few set backs but seems to bounce back fairly well. Today’s setback was he woke up with a fever around 8 am and so they had to run a series of tests to check for infection. So far everything has come back okay but it takes up to two days for the blood culture to show anything so we won’t know for sure until later tomorrow. After they gave him Tylenol once, his fever has not come back so hopefully it was just an environmental cause; like he was just too warmly bundled up. He also has had blood in his stools the last couple of days and we have not figured the cause of that. There are several reasons he could have that so right now they are just monitoring him.


They took his feeding tube out yesterday morning, not that he was ready for it. They just wanted to see how he would do and if maybe he would start eating more on his own without it. So far it has worked. He went from taking 15-20 ml on Friday each feed and then the rest by tube to taking 40-50 ml with each feeding on his own. He has to drink at least 40 ml each feed to stay hydrated and they are going to give him another day to up is intake to at least 50 ml each feed before they place the NG tube (feeding tube) back in because we need to make sure he is gaining weight. He has to have significant weight gain to be ready for his next surgery here in a few months.


It has been stressful but we are making it through. Tristan can definitely still use your prayers to help him over this next hurdle so that we can bring him home.


For those that are interested he can have visitors now so please feel free to come up and say hi. The number to his room is 816 460 1044 extension 4713. Just call before you come up and please make sure you or anyone with you has NO symptoms of illness at all. It is very important Tristan not be subjected to any viruses or bacterial infections that could set him back. Thanks to you all! Christy