In for the long haul

We have reverted back to a newborn sleep cycle. She wakes ever hour or 2 needing to either pee or poop or she is in pain or hungry. Sometimes or most times it's all of the above. It also doesn't help that we got another transfusion of platelets at 11pm, then vitals at midnight and again at 4am. Today we got the blood culture back and it tested positive. What this means is a bacteria has entered her blood stream. This bacteria has lived in her forever, just like we have bacteria living in us. The only difference between us and her is she has no immune system. So pretty much her body is attacking her from the inside as well as from the outside. Doctors say its a minimum of 7 more days in the hospital but they usually will keep patients for 10 days. The main reason for this is due to the fact that she needs antibiotics every 8 hours by iv. Her fever is all but gone but she isn't feeling better. She is in constant pain due to a number of issues. Her pee pee hurts from the rash caused by the diarrhea and her tummy hurts from the gas and the diarrhea. But the good news is they took us off contact confinement because they no longer believe she has hand foot and mouth. So now we can leave the room without putting on those hideous gowns and gloves. Not that this much matters cuz she has not felt like getting up and doing much all day. Her hemoglobin also dropped to 7.4 so this afternoon we had another blood transfusion. Blood sugar is good. Came in at 112 but she still has glucose in her urine. The last read for that was 500 which is pretty high. Doctors are unsure what is causing this (I know cuz I asked all 3 of them individually). Normally when glucose spills over into the urine your blood sugar will also be above 200 but hers is not they will continue to watch and see. Hopefully tonight will bring some sleep, though I'm not counting my chickens if you know what I mean.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~Isaiah 41:10