by Dianne | Feb 10, 2012
Just a really quick update before I grab some sleep while Ron pulls night shift at the ICU. Despite ongoing agitation, discomfort, difficulty breathing, and delirium related to either sleep deprivation, toxins from his kidney malfunction, or what they call “ICU...
by Dianne | Feb 9, 2012
Tyler went down to the ICU around midnight last night. Discovering he had to go there brought him right out of his feverish stupor – he was NOT happy and remained awake and agitated the rest of the night. Ron and I believe Tyler is right where he needs to be...
by Dianne | Feb 8, 2012
Today is Day 14 Post-Transplant. Tyler’s Veno Occlusive Disease worsened overnight and throughout the day. Despite repeat doses of Lasix, his body continues to retain the fluid leaking from his capillaries. He has gained quite a bit of fluid weight, and...
by Dianne | Feb 7, 2012
Last night marked 5 months from the night I took Tyler to the ER where he received his diagnosis. Through all the ups and downs we have had during this journey, we’re now in our deepest valley. Tyler started Defibrotide today, the investigational drug that...
by Dianne | Feb 6, 2012
It’s been a very hectic and frightening 24 hours, but I’ll try to summarize what’s been going on. Last night things were pretty touch and go with his pressures and sodium levels. The need to get his sodium levels up almost sent him to the ICU. The attending...
