Ryleigh’s counts are through the roof! Her bone marrow has engrafted and she is on her way to starting step down tomorrow. We are hoping that she will be discharged by the end of the week.
Her immune system is back in working order. She needs to take baby steps with getting out of isolation that is why it is called a step down. Her body is more susceptible to infections then before. One nurse described it similar to a newborn baby – it will take between 3-6 months for her body to start building up immunities to common infections again. That is why we have to be careful preparing and serving food (I have learned lots about food safe). As well we need to keep house tidy and clean to limit the amount of germs that she is faced with. As well we need to avoid crowded spaces and people with colds, flus, etc. When she goes out she will need to wear a mask. Apparently she can still attend movies, go to chapters, out for a bite to eat as long as we go during the down times…when these places are not packed with people. Movies…matinee on a Wednesday, chapters in the mornings, etc. I think we can manage that as all of us get a little overstimulated with large crowds.
Ryleigh has been doing so well – the last thing I want is for her to get a serious infection and be hospitalized again.
We will be sitting down with the team this week to discuss discharge. I have to learn how to change her dressing on her central line, be able to “hep” lock it, and keep it clean. She will be discharged with her line as she will be needing routine blood work and possible blood transfusions as her hemoglobin is still low. As well, there does not seem to be a clear idea of what follow up protocol is to be followed for Ryleigh’s after care. Because this is an experimental procedure they are unclear about what will happen in the future. I think I pinned down the fact that she needs to stay in Vancouver for at least 3 weeks for follow up tests and such. What happens after that is yet to be determined – there was talk for monthly visits. But that is all up in the air. I need to pin down a doctor to get some answers.
The big question is “Did the transplant put her Crohn’s disease into a remission?” Time will be able to tell us this…now that her immune system is back…we will see if it is calmed down and not “attacking” her digestive system.
I am crossing my fingers that we are making our way home the last week of March! We are so ready to get back to a somewhat everyday life. But for now it is time to celebrate!