It has been a bit of a roller coaster since I last posted.  Avery had started having fevers on Monday night which continued through Tuesday.  While fevers for most kids are good b/c it shows the body is able to fight the infection, for Avery this can be very draining.  He just does not have the reserve to fight and it can really take a toll on his body.  As a result he really struggled on Tues. His color was grey, he was working really hard to breath and just did not look good overall.  Avery has shown time and time again that he can go downhill very quickly.  So when he presents like this it puts everyone on edge, including myself.   Avery was immediately started on a number of antibiotics to cover all his typical bugs and blood, urine and sputom cultures were all sent.  A few of his labs were critical, indicating severe dehydration as a result of the fevers and his work of breathing.  Overnight his bipap setting were increased. 

So here we are 2 days later and he is looking much better.  The cultures are coming back negative which is good but the question is what antibiotic do you take away?  Obviously something was helping him but we don't know which one was.  So they will take off one at a time and watch what his body does.  If he starts getting sick again then things will need to be added back.  So what this means is that he will be here for a bit.  Obviously I don't want to take him home prematurely again b/c this time we may not make it more than 10 blocks.  While it is frustrating to still be inpatient, I want to do what is best for him and give his body time to heal. 

At least we have made really good use of the time here.  The Palliative Care Team approached me about being interviewed by the Boston Globe.  Since we all know that I am not shy AT ALL, then you know that I was more than happy to do it.  Plus, I am happy to get our story out there and hopefully help others that are going through similar things.  Avery was not too happy with the interviewing part (think he was wondering what all those men in precaution gowns were gonna do to him). The reported thought the interview was so inspiring that they came back with a photographer and will also run a paper article (Avery was all for that, how could he resist a pretty lady taking his picture). So on Monday look for the Boston Globe article and on March 28th the interview will be online :)  

Hopefully Avery is done with all the drama and want to go home soon b/c I know I do :)