gastric bleed
Tyler had a pretty bad gastric bleed today, so they ended up taking him off the defibrotide (which causes bleeding) and keeping him at a Delta p of 58. The bleeding is either from an ulcer or gastritis, likely due to all the steroids he's taking. One more thing for...
a stable day
So far we're having a stable day with some improvements as well! His collapsed lung is no worse and no better than yesterday, so he remains on a higher airway pressure. His blood gases were decent enough for them to wean him down to 58 on the Delta p. Toward the end...
quick update
Tyler's collapsed lung looked much better on x-ray this morning, and his O2 sats are on the rise! His left lung is showing some overall improvement as well! He will remain on the higher airway pressure until he can sustain his O2 levels and until the next x-ray shows...
believe in tomorrow housing
I forgot to mention that we were given the opportunity to move into St. Casimir, the transplant housing that is operated by Believe in Tomorrow. We checked out of the hotel this morning and got settled in our new little apartment in the Canton area of Baltimore City....
ramping up our patience
Tyler was less stable today. His blood pressures and oxygen sats kept dropping. His right upper lobe had not improved at all from yesterday's chest x-ray, so he had to go up on his airway pressures again to try to get his lung inflated. The total arsenol they would...
six months after diagnosis and a long road ahead
Tomorrow (March 6th) marks 6 months since I first brought Tyler to the ER in September, and it also happens to mark 3 weeks on life support. Before his doctors knew Tyler had a particularly nasty subtype of AML that would require a bone marrow transplant, we were...
a calmer day
Tyler is having a fairly stable day after all the upset yesterday. His right lung is still not completely reinflated, so his oxygen sats remain in the low 90s. He is still on the higher ventilator pressures, and they are doing no weans for awhile in order to maintain...
collapsed lung
My heart is finally beating a little more steadily after the day we’ve had. This morning Tyler’s oxygen sats were dropping, and kept dropping despite being suctioned and given more oxygen. A chest x-ray revealed that the entire upper lobe of his right lung had...
when ups become downs
So it ended up being another of those up and down days. Tyler's lungs did NOT like being dropped to a Delta p of 58 earlier today. His CO2 gases were very high - one time going above 100 - and he had to be brought up to 65, where he remains now. Usually his O2 is...