Ryleigh’s time in the hospital was “non-eventful”. We graded it a B+ as Chloe and I have devised a grading rubric about Ryleigh’s stem cell transplant process – ever the teacher, I am! The doctors that are responsible for Ryleigh were still on vacation so it was mostly residents and nurses that dealt with her. They were good but definitely oncologists not GI. There is an issue about dates for her return also….I was originally told it was going to be Friday…as she is already immune supressed and the added chemo could make her blood counts drop early. But the nurse and oncologist on call said that she does not come in until the 13th. Less time in the hospital is good for all of us!
I was surprised by how easily I slipped into the role of hospital mom. I forgot how intense it all is – the number of nurses, doctors, and others that come into the room asking questions and monitoring Ryleigh as she received her treatment. I have to be “on” most of the time… answering and asking questions, calming Ryleigh down if she misunderstands something, and making sure that these new nurses and doctors understand her Crohn’s and her stress and anxiety. I am glad that it was only for 24 hours this time. A slow introduction to this environment was good for both of us… We will be resting lots this week to prepare for her next stay.
I have started deep cleaning the apartment — I am becoming a clean freak! I know that shocks some of you! I remember having to do this with Chloe…but for some reason it is more worrisome now. Maybe because Chloe’s system was not wiped out totally like Ryleigh’s is going to be, or I know more about things…not sure. But, bleach is now my best friend. My land lady should be giving me a cut rate on the apartment as I have cleaned things that really have needed it – crack around the faucets, ledges, dusting everything….and LAUNDRY. Laundry is another constant (more than before). We can only wear clothes once, use towels and dish clothes once etc…so I am making trips to the laundry mat every couple of days. As well, it would be ideal for Ryleigh to have her own bathroom. So instead we have to disinfect the toilet and sink area each time it is used. Fun times…
Ryleigh starts on a 4 day regiment of G-CSF yesterday – another medicine that is administered by injection. The G-CSF will stimulate her bone marrow to develop stem cells so they can be harvested on Monday. Ryleigh has learned some helpful skills about mindfulness and breathing as she gets the needle. It makes it so much easier for me as she handles these things so well. The medicine does cause a low grade fever and we are expecting her counts to continue dropping by the weekend.
We are keeping things low key around our place. Ryleigh spends her time resting by watching shows on NetFlix, playing on her ipad, reading, and if we can convince her playing a board or card game. Trying to rest as much as possible as we know that the hospital stay will be coming.
Chloe is still learning to cope and manage her pain. She is so strong learning how to pace herself and manage her pain. She is doing more school work, helping around the apartment, and coming out to run errands with me. She gets so tired after she does these things and is making an effort to rest so that she can continue to do these things.