Wednesday, July 6, 2011
Skyler is still doing great! His levels are dropping nicely and we will hopefully be going home tomorrow. They still want him off all antibiotics and his antifungal until Sunday to really see if those are the cause of these fevers, so that means I dont have to hook him up to anything for 4 days. I am beyond excited for this. This is a MUCH needed break for the both of us. Ever since August 17th 2010 (almost a year) Skyler has been hooked up to something EVERYDAY. Even since being home in January I have had to hook him up everyday, and for months I have been hooking him up eight times a day. The most sleep I have gotten in one night is 4 hours so Im really looking forward to this break. And Im so grateful that Skyler will be able to not have to drag around a pump all day long!
I did get an unexpected blow today with some not so great news. For at least a week now I have noticed that Skyler cant hear what Im saying alot of the time. I am constantly having to repeat myself so he can hear me. It has gotten to the point where I became really concerned and brought it up to our doctors a couple days ago. Today Skyler had an appointment down in Audiology for a hearing test. I was expecting them to say he had a little hearing loss due to a ear infection, but what they told me shocked me. He has significant hearing loss in both ears that will probably require hearing aids in both ears for the rest of his life. What?! I couldnt believe it. He can ear low tones ok but higher pitched tones he cant hear. He can hear that we are talking to him but he cant understand what we are saying. They weren't able to do a complete test on him because he wasnt feeling good during it and couldnt sit there the whole time so they are going to repeat the test when we are outpatient, but if they get the same results he will definitely need hearing aids. Our oncologist said the culprit of the hearing loss is one of the big gun antibiotics he was on in the PICU when he was really sick. Even though this seems like such a minor thing compared to what could have happened to Skyler, it still makes me sad he has to deal with this for the rest of his life. Im so glad he will be able to hear properly now and get the help he needs but kids can be so cruel to other kids that dont look like them. I hope he wont have to deal with mean kids when he gets to school. He will still be the cutest kid ever though and Im sure he will make those hearing aids look GOOD! I love you Skyler and I am SO proud of you!
Waffles and frys for breakfast...gotta love hospital food