The Dreaded "Y" Word

We are stuck here in hospital once again. I thought that Noah had a viral infection like Kailyn and Joshua, but when they got better and he didn't, I began to worry. So during the night on Sunday, we headed to the ER, with Noah spiking crazy high fevers. His initial bloodwork showed a very low white blood cell and platelet count. So after a long 9 hours spent in the ER, he was finally admitted to the ward. We were unable to get a line culture, but got a peripheral blood culture, which yesterday came back growing the dreaded yeast...again. Very frustrating! ID feels that Noah may have been undertreated last time and that's why we've had a reoccurance. So far we don't know if this is the same yeast, or if it is a new type of yeast. We will have to wait for the lab to identify it. But the plan for now is to try to treat with Amphoterrible once again and try to save this line. So the Ampho was started yesterday and is a miserable experience for Noah once again. He is still spiking the odd fever and hasn't perked up much yet. His platelets are still dropping, but hopefully he will begin to respond soon to the Ampho. We are unsure yet how long the course of treatment will be this time.

We also finally got results back regarding the Sanfilippo Syndrome test that was sent a couple of months ago. He was tested for type 3C, which came back normal. However, the tests did show that his cell activity isn't completely normal, and his MPS level in his urine is still abnormal. So we will continue to try to diagnose exactly what type of MPS disease he has. Tomorrow bloodwork will be sent for type 3B. Unfortunately each test has to be sent to the US, and takes weeks for results to come back. Although in the short term, this diagnosis likely won't make much of a difference, but in the long term, it would be very helpful to know.