Today was a much calmer day. Ryleigh has stabilized and is more animated and cheery.
We spent the day hanging out – being a Saturday we did not have as many visits from doctors as during the week. There has been a switch over of doctors, fellows, and residents for most of the teams Ryleigh has had looking after her. We spent time today reexplaining what Ryleigh has gone through. There are still no definitive answers to why she has had some of these serious incidents on top of her IBD.
Ryleigh had another visit from Rheumatology. They are responsible for generalized autoimmune diseases such as arthritis, lupus, and vasculitis. This team was called back because of Ryleigh’s brain lesion and using inflammation and an autoimmune issue with the vessels in her brain. Rheumatology does not yet see the evidence of this explanation in her MRI. The only way they could know for sure would be an angiogram or brain biopsy. Because Ryleigh is improving and not digressing they do not feel it necessary to do these types of procedures (yet). Rheumatology is going to spend some time investigating resources and information to see if there is connection between all three events that Ryleigh experienced.
Rheumatology uses the drug Remicade regularly with young patients. I asked about the side effects of this medication and would Ryleigh’s symptoms be side effects of Remicade. She does not believe so – Ryleigh has only had 3 treatments and typically it would take a longer time for side effects to occur.
Neurology did not come by today to discuss the second MRI of her head. The only information we have gleaned from this MRI is that her lesion has not grown and it has improved. This is also evident in her behaviour and improvements physically. We are hoping that on Sunday they will show us the second MRI and explain what is happening.
Ryleigh’s leg swelling has decreased significantly. She is a bit more agile and as a result her pain has decreased. She says that it is more uncomfortable then painful. Ryleigh still feels a numbness in this leg. This is most likely due to the brain lesion then the blood clot. She is still on intravenous blood thinner and the plan is to have her transition to injectible heparin next week. Once her levels get consistent about the amount she needs they will be able to move to this type of medication. They are still concerned about bleeding but we are watching for this.
Thanks to Dan, who has made the journey down to Vancouver, Ryleigh was motivated to get out of her room and head downstairs to the front entrance. She was in a wheelchair nevertheless she was out of her room for something other than a test or procedure. Dan has been taking care of our buddy Jakob – our goldendoodle. Jakob is special to all of us in different ways. For Ryleigh, he is a source of comfort and joy. At home, Ryleigh will spend time with Jakob to help her relax and help with pain and fatigue. Jakob is so soft and furry he is like a live stuffed animal. Dan brought Jakob to the front entrance today and Ryleigh got to spend time with him. Pet therapy is very beneficial.
Ryleigh even got out of the chair for a bit. Yahoo!
We have been here for 3 weeks and have started to make room 11 on floor 3 unit F our new home.
It is neat how we make the effort to make our space somewhat comfie.
This is my sleeping area – Chloe at times will stay for a sleep over. When she does stay over.I sleep in the lounge chair which is surprisingly comfortable. We are still getting up frequently in the night for vital checks and such. Last night it was blood work and beeping IV pumps and heart rate monitors.
We are lucky to be across from 3F’s kitchenette. We have a shelf in the fridge for our items and then use of the basic equipment – microwave, kettle, and toaster oven.
The best part of our room right now is the wall and door that Ryleigh faces. Thanks to the students and staff at EDS for the lovely hearts and messages. What a great way to show such positive love and energy.