Calm Day…Finally


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!

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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.

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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.

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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.

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About WiseMindedLiving

Mindful living and a thoughtful attitude are the focus for Johanna as she navigates the paths of life that are sometimes daunting. Her journey as a mother and educator are interwoven as they are the primary motivators for her stories, reflections, and wondering.

8 thoughts on “Calm Day…Finally

  1. I love seeing the girls with Jake! Awesome that Dan was able to come down with him. Great to be able to inject a bit of her own personal things in the room when there for as long as you have been! Glad to hear that the swelling has gone down and Ryleigh is finding it uncomfortable rather than painful. Thinking of you all!

  2. It is so great to see Ryleigh up and out of her room!! Animals are wonderful for healing! Yay Dan for bringing your dog!!

  3. Oh thanks so much! I was going to ask for more pictures. JAKOB??? So so wonderful Ry that he came to see you! I’m sure he misses you like mad. I’m really glad to hear of a nice day.

  4. So glad to hear the positive report! You are all still in our thoughts and prayers. Yes, there is just something about animals that are so good for the mental, emotional and physical health of us humans:) Stay strong, rest and have an uplifting day:)

  5. this is what i hear
    lesion smaller
    leg less swelling
    pain decreased
    attitude better
    wheelchair and visit downstairs
    the nurse in me is doing a happy dance
    GO little ryleigh GOooooooooooo!!!!

  6. Sam and I have done a fair bit of training of doctors and nurses. One time when Sam was in the hospital in PG with pneumonia, the Peds Doctor came in with a big group of student doctors, or residents, or whatever. He was so excited and animated to show them a ‘good’ example of a bad infection. He demonstrated a technique. A nurse in the room watched all this carefully. Next thing you know, here came all the nurses and student nurses so she could show them. Sam was awesome and and patient with it all. The hardest was having to repeat the history over and over. But, I believe in education, so I kept telling myself that. It is an emotional process to tell the story. One of the great things about the Peds Ward in PG was that when Sam had his treatments, we often had a visit from a dog that was ‘paid’ to come in be with patients. They often brought him around during the set up of the IV.

    So glad you had a calm day, and bless Dan for bringing himself and Jake down. Love you lots!

  7. I am thrilled with the out of bed day. I hope they can resume the disease modifying process soon. Modifying eventually becomes a great word. I promise. And, your living space pic helps us all visualize where you are. It could be better (like Australia) but it could be worse and Loki hospitally. Nice to know you have some cheer around you all.

  8. Ryleigh,
    It has been so hard to read your blog.. I’d have to take a few days to gather my emotions and then I could read again. But this is so great!!! Things are looking up. I hope you feel the same way. We are all thinking about you.. even though I’m not at EDS, I was there to sub on Friday and it’s good to hear what people are doing to cheer you up. Just wait for the “cheering up ” to arrive.
    Know that we are all praying and sending as many positive thoughts as possible.
    Getting out of the building and your chair is good for your spirit (and ours!!)
    Miss J

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