While in isolation, Tyler will be drawing his own blood for labs and keeping his Hickman line clean with daily maintenance. You can actually see him preparing a saline flush as he finishes his first solo blood draw. While it would be scary to have to operate your own IV, the nurses must minimize the time they spend in Tyler's room. They will occasionally come into the room to administer IV drugs, but they limit their visits quite a bit. And of course, if there was an emergency, the medical staff would come into the room to care for Tyler.
There are definite pros to this isolation status, as Tyler should also get some peace and quiet without frequent interruption from nursing staff. Wendy (the nurse who coordinates the research study that we are participating in) says that Tyler should just view this as a brief vacation. He gets to do almost anything he wants for the next 5 days, which should help the time to pass more quickly.
In addition, anything that goes into the room will stay in the room. Tyler's appetite was fantastic today, so we saw this in practice. All of the food they bring is in disposable containers and Tyler is instructed to only take the pieces of food that he wants. He can actually dish himself up buffet style at the door of the room, so that he doesn't fill his trash container with lots and lots of food.
At 8:30 on Friday morning, Tyler measured only 58 mR/hr. He won't be measured again until Tuesday, with the weekend and holiday for Martin Luther King Day. We just hope that this radiation continues to work over the next several days.
Transplant -11 days and counting
Friday, January 16, 2009
His Newest Nurse
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Hi Bledsoe family,
ReplyDeleteI have been reading along with great interest. This is some kind of crazy protocol/clinical trial. Do you have a post where you explain it?
I can't believe Tyler has to draw his own blood and care for his own Hickmann. What about changing linens, IV tubings, and medications?
Does the radioactivity decrease over time and then everything in the room is OK? I am glad to hear his appetite is good. That is always a bonus. It must be so hard on all of you not to visit. That would drive me cukoo. Although at Hopkins, there were no accommodations for family to spend the night anyway. Even the caregiver has to go home, unless you want to make an issue about it and sleep in a very hard and uncomfortable chair all night. Are you guys in Seattle at the Hutch?? Is Tyler getting a related donor, cord blood, or MUD?? I am praying for Tyler and wish you all the best. CML wife...thank you for your kind comments on my blog. They are much appreciated. Hopefully, I can find out your name so I don't have to call you CML wife forever. Take care :)
Hi Mandy, just catching up on your blogs. I have learned so much from the both of you! Thank you so much...
ReplyDeleteTHanks for sharing guys! I am praying for you!!!!!
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