dialysis averted
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...
incoherent
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 now. ...
headed to the picu
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 his belly...
“only” the effect of the chemo
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 hopefully...
veno-occlusive disease
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...
alarming turn of events
Things are not going so well. Tyler is having low blood pressure again. Damaged by the Bulsulfan chemo, his capillaries are leaking fluid, which is causing the hypotension. The leaking capillaries are also causing fluid to build up in his body at an alarming rate -...
a delicate balance
With the help of morphine, Tyler was able to sleep on and off last night. He's a little strung out today, but it was good to get some sleep, even if drug induced. His fever drifted back and forth between low to high. The doctor this morning said it's not unusual for...
glimmer of hope
I know I just updated 5 hours ago, but given all the praying everyone's been doing, I wanted to report how much BETTER Tyler is doing. Whereas we thought he was going downhill again with his temperature, he actually felt much stronger as the evening progressed...
multiple side effects
Tyler had a difficult night. His blood pressures dipped low and his fever topped 104. His GI problems plagued him, so once again it was a sleepless night. By morning his fever dropped a bit and we got his lab results. His bilirubin levels had increased, but his...