Still without my own computer – should be back in the next couple of days. Have to quickly write something…before my day starts and it is non-stop for me. I am working harder now then I have ever worked. I am on call all day and night. Right now, Ryleigh is feeling okay as the steroids and other meds have supressed her immune system have given her some relief from her Crohn’s disease. The steroids not only give her some relief but increase her appetite. As a result I am down at the 2B kitchen 4-5 times a day. Preparing food is a time consuming task as I am following extreme foodsafe expectations and using plenty of press and seal wrap to surround all sealed prepared food so it can be wiped down before entering the room. Handwashing happens anytime her room is entered – at least one minute of scrubbing with antimicrobial soap – my hands are a bit raw. But I will make sure I can prevent as many germs as possible entering Ryleigh’s room. Ryleigh has two blankets that she finds very comforting. I have to wash them every day. Clothes have to be washed and put in cleaned plastic tubs to enter the room. Ryleigh also prefers to have me do the caring chores that need to be done to keep her germ free. She does not like having me outside of the room as it seems like nurses and doctors seem to come when I am not there. At times they communicate things that might stress Ryleigh out. Each switch of shifts changes the way each nurse/doctor does things. Ryleigh gets a lttle frustrated when expectations change day to day. Too much for her to handle right now. So, I quickly take breaks so I can be back in her room. Luckily, Chloe has been very understanding. I get back to the apartment at some point during the day and try to do errands as I am out of the hospital. Whew, tuckers me out just reading it.
Transplant went really well. Ry has responded well and feels hopeful.
She is positive and engaged almost all of the time. I am seeing parts of the “old” Ryleigh appear as her Crohn’s has been suppressed from the different medications – hoping this will continue as we move through the next couple of weeks.
The doctor warned me that things are going to get harder before they get better as we wait for engraftment (stem cells enter bone marrow and start to develop regular cells). Her white blood cells and neutriphils are at 0 so she is at extreme risk for infection. It takes 10-14 days for engraftment to normally occur. We will wait patiently during this time.