Sadly things with Miss Lucy have not changed much. Her temperature is high, greater than 105. Cultures are still negative, which means the likelihood that this is bacterial/treatable is dwindling. We sent separate fungal cultures from her line yesterday afternoon just to cover all of our bases. If she has a fungal line infection it should show up on a regular blood culture, but not always. We did a nasal swab to check for respiratory viruses. That came back negative, but it only screens for common respiratory virus. Lucy's lab work is indicating that the inflammatory process is setting in, in other words her MAS also know as secondary HLH is flaring. Our biggest fear has become our reality, it appears that there is nothing we can treat in Lucy at the moment, supportive medicine that is what we are doing.
Lucy's blood counts were dropping so we transfused her last night with pack red cells. We were concerned about giving her too much blood as her liver is not functioning well and is trapping blood product causing it to swell, causing her more pain. Our goal was to get her hemoglobin above nine but not tank her all the way up, anything below nine and her heart is not happy. Heart rates are ever so slightly lower which we'll take as a positive.
Drew and I were talking yesterday afternoon about all of this... what we are seeing in Lucy is like waiting for a hurricane to hit land. You know it's coming, you don't know where or when, you prepare as much as you possibly can, but in reality who knows if you preparations will ever be enough. When the storm hits you won't know until it's all over how much damage has ensued.
We have faith...our girl is a fighter.
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hoping that this will settle down fast or that the Drs. find a strain of something that they can treat.. so sorry that she is so sick.. our hearts are with you.
Hoping Lucy soon takes a turn for the better. So sorry for all that every one of you is going through...Thinking of you always.
With much love, The Koehns
As always Lucy continues to be in our thoughts and prayers. We are sending you all vibes of strength and comfort.
Lorrie, Abbie & Nate
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