June 6, 2016
Surgery went well and we got great news!
Surgeon said they aren't masses in his body as appeared on the scans to the doctors, so nothing malignant. Praise the lord![...]
Posted 2016-06-06T18:15:00Z
Cole Hayden - Journal
Read Entries & Updates
Posted 2016-06-05T23:45:00Z
June 5, 2016
Weekend has been pretty good overall considering. Fevers haven't been quite as bad and we're treating them when they come. Today was better with moving around - yesterday was tough because he was so sore from not using his muscles.[...]
Posted 2016-06-04T02:20:00Z
June 3, 2016
Blood transfusion went well. Have to check vitals again at 10pm to make sure all is ok. Still having fevers, it's 104 right now. đđŒ
We can go home later tonight and take medications at home. If anything changes outside of the fevers we are to call. Fevers won't go away until after surgery and they figure out what we're fighting. Surgery won't be for entire removal of the masses, it's to get enough to diagnose (malignancy/benign) and determine treatment plan.[...]
Posted 2016-06-03T21:00:00Z
June 3, 2016
Met with docs. He's scheduled for surgery Monday. We're going to do a blood transfusion today/tonight because his hemoglobin is so incredibly low and they really need it higher going into surgery next week. In general, they are completely ok with him going home the weekend because he's stable, BUT, if he goes home that may change him on the surgery schedule because he would be "outpatient" and could get bumped. đđŒ that's up to surgery scheduling. IF that's the case, we will stay (and his team recommended that) because we don't want to postpone the surgery. [...]
Posted 2016-06-03T16:30:00Z
June 3, 2016
No surgery today
They're assessing if he may be able to go home and come back for the surgery which should be "early next week". They'll get him scheduled and then we'll see. All 3 teams have to agree he could even go home so they just wanted to see our thoughts about the possibility.[...]
Posted 2016-06-01T22:15:00Z
June 1, 2016
Met with all 3 teams at once this afternoon (Red Team (general pediatrics), HEMOC and Infectious Disease).
They can't tell enough from the small tissue they got from the biopsy. But basically he needs surgery as they want to try to remove all the tumors, if possible, but we haven't met with surgeons yet and they will decide.[...]
Posted 2016-06-01T18:00:00Z
May 25, 2016. Update
So long story short, they say Cole "is a mystery." They cannot figure out what's going on.
They are meeting with specialists this afternoon to explore 3 main areas: infection, autoimmune diseases/rheumatology, and cancer. [...]
Posted 2016-05-31T22:45:00Z
May 31, 2016
No new information but got that tube out, unhooked our wires for a bit, and went outside for some air! Best things I've seen in over a week đ[...]
Posted 2016-05-31T18:00:00Z
May 31, 2016
No new info from tests yet but the chest tube comes out today đđŒ
They think the remaining pocket of fluid in there may take care of itself, or they may have to go in and remove it. But it's not coming out via the tube so no reason to keep it in for now.[...]
Posted 2016-05-28T23:45:00Z
May 28, 2016
Today became a better day for spirits, and better than last night. No new information, but we were able to stand up for a sponge bath and move to a chair (reluctantly and some pain, but good once we got there). [...]