Raul did not have to have dialysis today! His numbers are still
elevated, but his weight had not gone up since last night and he had not
gotten too puffy. They will decide in the morning if he will need it
tomorrow, but the overnight BMT doctor was reassured that his numbers
were close to the same tonight as they were this morning.
Over
the past few days Raul has been getting more jaundiced, and today his
bilirubin numbers were pretty high, so they ordered another ultrasound.
Luckily his liver only showed mild inflammation with normal blood flow.
This most likely means that his liver was just impacted by the chemo or
the kidney damage, but it will hopefully not be another major issue!
They do not need to do anything to treat it at this time.
Raul's breathing has also been more of an issue today, so we switched
him to a high flow nasal cannula. This seems to be keeping him more
comfortable with his breathing and keeping his oxygen at a good level.
He must be liking the easier breathing, as he doesn't seem to be
bothered by the nasal cannula at all!
This morning Raul's INR
was low (as were his PLTs), so he got a vitamin K infusion. His mouth
and around his g-tube have been pretty bloody, and he had two episodes
of vomiting blood. These issues are not surprising given the lab
results, his EB, and the mucositis. This is actually probably the most
common issue he is having! His other side effects/complications are less
common, so it is a bit unusual for him to be getting them all at once. I
am hoping that means that once he recovers from this he will be over
the major issues!
Raul still slept most of the day, but sat up
on and off. He seems to be most awake for a while in the morning. He is
still not wanting to play, but watched videos on his iPad, and even
imitated a Donald Duck laugh (video below)!
Tell my little buddy Raul that Uncle John, Aunt Leigh, Elizabeth, and Johnny that he is a superstar taking all this abuse as only he can. We love you, Caroline, and our hearts and prayers reach out to you all for strength and patience. Raul is a special little boy, and I pray my special prayer for him. Love, Uncle John
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