still waiting
The cells just arrived at the hospital (11:15 PM). We’re now looking at about 1:00 AM for his transplant. Ron, Tyler and I are just hanging around the hospital room watching sitcoms while we wait. Because of the length of time for the transfusion of cells and then having vitals taken every 15 minutes, we’re in […]
new cells going in!
Tyler is now receiving his new stem cells!
all done!
The transfusion is complete. Tyler became very ill during the procedure – violent vomiting, chills, headache and high blood pressure. We were told this is normal, especially since the cells were an incompatible blood type. He is now asleep, but will still be getting frequent checks of vital signs. I can hardly believe we are […]
first day post transplant
Today has gone pretty well so far! Tyler wasn’t able to sleep well the rest of the night due to continued bouts of nausea and vomiting. By late morning, he was up and was finally disconnected from his leads and tubing so he could take a VERY welcomed shower. This made him feel like a new man, and after […]
the calm before the storm
Just a quick update. Tyler continues to do well! He is in the calm-before-the-storm phase. The immediate effects of the chemo and transplant are mostly over, except for fatigue. His counts are dropping lower, and the early stages of mucositis started last night. But, he is still eating at this point, which is really great. […]
and the storm arrives
Tyler was doing really well until this morning, and for that we are so VERY thankful! Today he developed full blown mucositis and has had a fever. He’s on a broad-spectrum antibiotic while they wait to see if the cultures grow anything identifiable. His mucositis has him vomiting again, and the anti-nausea med they gave him is […]
a new concern
Tyler’s fever remained high this morning, and a new concern arose. Tyler’s bilirubin levels have steadily increased over the past few days. Post-transplant, this is usually an indication of Veno-Occlusive Disease (VOD). VOD is when the small veins leading to the liver are blocked and is one of the most frequently encountered serious complications after […]
rough day
Tyler was pretty miserable today. He’s just sick and tired of being sick and tired. We thought he was starting to feel better, but then he spent the afternoon retching from his mucositis. His blood pressures dropped very low right about the same time he spiked another high fever. To treat the blood pressure, he […]
trying to avoid the picu
Tyler narrowly avoided the ICU all last night. His blood pressure had to be monitored every 15 minutes, and his fever wouldn’t break. Tyler had almost no sleep and was incoherent at times. They added Vancomycin to his other heavy hitting antibiotics. A bedside chest x-ray revealed no problems with his lungs, so all they know at […]
day 8 post transplant
Today is Day 8 post transplant. I don’t know how else to say it other than our boy is extremely ill. He is getting plenty of attention around here. His fever continues to range between 100 and 104, despite fever reducers. Every inch of him is hot to the touch. He is incapable of sleeping or […]
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 kidney levels had returned to normal. Still nothing has grown […]
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 despite his fever. He watched TV, talked, joked, and finally, he just […]
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 transplant kids to maintain […]
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 – he is very swollen and has gained 4 kilos since this morning. […]
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 physician, Dr. Small, was concerned enough with what was […]