We have answers and plans! Graysons bacteria came back today. It is E. coli. Probably was caused by some mucositis and is fairly common in cancer patients. It is treated by cefepime which is the antibiotic that they started him on yesterday so hopefully it is already working and doing its job. His blood culture from last night came back negative for the first time which probably means were on the right track! Hooray for good news! It is usually a 10 day treatment and your inpatient the entire time so it can be done via IV. As of now because the one test came back negative we are hopeful that its not colonized his Broviac line. Only time will tell. So we continue to pray for negative blood culture results. Because we are admitted for the next 10 days, nutritionist and doctors are in agreement that we will put the NG tube in today and start the feeds tonight. One thing I love about our medical team is that they allow me to give my opinion and actually use it! Per my request were going to start by only doing the feeds at night time via a pump that way during the day he still feels hungry and needs to eat so we dont lose those skills. Today we have one of my favorite nurses who is always willing to shoot me straight and answer all my questions honestly. She was able to clarify in my brain why the tube is necessary and how good its going to be for him. So I can honestly say that my brain is 100% on board although my heart is still a little hesitant. Mostly because its a visual reminder of what hes going through and how hard its been on his little body. We had arranged to get our good friends who are photographers to help us capture some images of G, his tiny, skinny body, excess skin rolls, etc however that evening we were transferred to Shands. Since the feeding tube will go in this afternoon, our Gainesville friend and photographer has agreed to come and snap a few pictures. I know it sounds a little morbid to want pictures of exactly what his body looks like but Brady and I all along been very committed to documenting this whole journey to help families down the road know what might be in their future when receiving a diagnosis like ours. It is important to us to capture the happy, sad, and the in between times because it all tells our story in a complete fashion. This is a roller coaster, ups and downs all along the way. Thank you for your prayers over the last several days. They were certainly felt and we are so pleased that we are dealing with something lower on the severity spectrum for a blood infection. These kind of bumps in the road are unfortunately common but can often be life-threatening see you take them seriously and treat quickly. We have been very fortunate that we are 7 months in and this is our first big scare.
Posted on: Mon, 24 Mar 2014 17:00:12 +0000
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