“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 will reverse his Veno Occlusive Disease. It will be infused […]
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 is very large now. This turn of events has brought his lungs into the equation, a dreaded possibility. The extra […]
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. We are thankful the […]
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 psychosis,” Tyler made some medical gains today! It appears the Defibrotide is kicking in because Tyler […]
a broken-hearted dad
Ron was on bedside duty last night, and when we changed shifts early this morning I saw a father whose heart and spirit were simply broken. Tyler had his most difficult night yet. His fever reached 104.7, so he required a cooling blanket, He tried to speak, but Ron couldn’t understand him. His shivering was so violent it shook the […]
heart wrenching suffering
Today is my birthday. I think that made everything that happened today that much more unbearable. Yesterday, Tyler seemed to do somewhat better throughout the day as far as his agitation went. His fevers continued to get higher and required wiping him down with ice water. We really thought he would sleep last night, but instead, he grew […]
lungs and kidneys in trouble
Tyler’s condition worsened during the night. Because his kidneys weren’t doing so well yesterday, they increased his fluid to try to help them out. Unfortunately, this then allowed more fluid into his lungs, so now his lungs are in trouble. The primary issue with his lungs is that his new immune cells rushed there to […]
drug-induced coma and life support
This morning Tyler had to be intubated as more fluid infiltrated his lungs. He could no longer sustain his oxygen levels on the BiPAP machine despite increasing the pressure as high as it would go. As they intubated him, they realized his lungs were very stiff. The doctor said the fact Tyler kept working so hard to […]
tyler needs a miracle
Doctors just sat us down. They said Tyler is very, very critically ill with lung disease and multi-organ failure and is not responding to the ventilator. He needs a miracle right now. Family only at the hospital please. Pray for a miracle please!
keep praying!
No changes. Keep praying! Next 48 hours crucial.
tyler is fighting
The volume of prayers being lifted for Tyler is astounding! Last night, we received some small glimmers of hope. Tyler’s speed of oscillation and amount of pressure were able to be reduced a little bit. His heart rate, oxygen levels and blood pressures remained stable. Yesterday morning they started him on some medications that, if […]
bronchoscopy
Bronchoscopy went beautifully – no bleeding, and vitals stayed good throughout. They feel they got a good sample. Now we wait for the results – will be a day or two. Your prayers have been so effective, and the hope we’re feeling is amazing!
still stable
Tyler hasn’t had any real significant changes – the bronchoscopy yesterday did end up causing some vent settings to be increased, but they’re all back down now. His current settings, while improved from the day they told us Tyler would need a miracle, are still considered very high. The goal today is to try to […]
ideopathic pneumonia syndrome
Everything has come back negative from the bronchoscopy – no bacteria, fungus or viruses. This means that as Dr. Gamper suspected three days ago, Tyler has Idiopathic Pneumonia Syndrome. IPS can be caused by the Busulfan treatment Tyler had, by a blood transfusion, or by many other causes. “Idiopathic” means they don’t know the source. […]
still fighting!
When the doctors met with us three days ago for what we thought was a normal care planning meeting, Tyler’s ICU attending doctor blindsided us by telling us our son needed a miracle. He told us how diseased Tyler’s lungs and other organs were. He recommended a Do Not Resuscitate (DNR) order and told us […]