Hospital life

Day -10

Rylie is doing great. Today is the last day of Campath. This drug is not technically a chemo drug, but everyone around here treats it as if it were. Nurses come in with gowns on when they are handling the syringe. (I'm now sitting about two feet away from it. Do I need a protective armor?) We are supposed to wear gloves when we change Rylie's diapers so we don't get exposed. Poor Rylie, but she is still very active and playing with toys. Today she began climbing a chair like it was a ladder (every rung, higher and higher).

Hospital life is in full swing I suppose. Granny B arrived yesterday and will likely end up taking a shift in the late afternoons/early evenings so Jade and I can see each other for a few hours each day. She is also helping run errands to Target, do laundry, etc. So far, Jade and I are alternating night shifts. We get to enjoy Rylie's hospital food three times a day since Rylie hasn't taken up eating big people food yet. Although, given Rylie's allergies our selection is very limited. Tater tots, anyone? Almost all kids on this regimen end up not eating after a few days. So be praying that Rylie will continue her passion for "Sweet Potato & Chicken Dinners." If she refuses that, then we know we are in trouble. If she does stop eating, she will get IV nutrition (TPN) which means she will be hooked up for 14-16 hours.

To clarify, as there have been some questions, Jade and I can come and go as we please as long as we stay healthy. Rylie will be in her room until her blood counts come back up when she can have short stints in the hall. One of our new friends' son is doing great and has been motoring around out in the halls the last few days. They are planning on getting discharged tomorrow to the RMH and will then start the daily trips to the BMT clinic as the medical team will continue to monitor blood counts for a few months.

That's about it for now. Rylie is down for her afternoon nap . . . Benedryl will tend to do that.

Lyle