Monthly Archives: November 2014

Discharged today and a treatment plan in place…whew

Ryleigh was discharged today.  She is definitely in a full flare as scopes and tests have determined.  The disease is in various parts of her digestive system causing her pain, fatigue, and discomfort.  She is on a steroid again but it is different then the prednisone as it should not cause as many systemic side effects. This makes all of us very happy as the prednisone was brutal for side effects.  So, the plan is for her to try this new treatment and hope that her rebooted immune system will adjust better to the new meds and she will go easily into a remission.  We are looking forward to returning home tomorrow and get back to Chloe and the wonderful puppies of ours….I am sure Ryleigh will be cuddling plenty with our Remy!

 

I find it  odd how comfortable Ryleigh and I were with slipping into hospital mode again.  We have connected with a variety of staff and found it reassuring to see their kind and caring faces as we navigate yet another hospital stay. We figured out what needed to be done. And hopefully Ryleigh will be on her way back to be fun, energetic, and witty self.

 

Thanks for all the kind and caring comments — can get lonesome in the wee hours of the morning and I appreciate the support.  Yippee to coming home..get to work on report cards…much more fun than the hospital (all about perspective).

Ryleigh is back on 3F at BCCH

Chronic IlnessDisheartened to share this news….Ryleigh’s remission has ended and she is now in a full flare again.  Ryleigh started feeling ill mid October and has been getting worse.  We originally hoped it was a flu or some other bug that would go away but as the weeks passed she suffered more and more.  Ryleigh had to stop going to school – which she really was enjoying.  She has been enduring pain and discomfort, severe fatigue, nausea, joint pain, and unable to focus and concentrate.

Ryleigh has been assessed by her doctor and we wait to hear what the plan may be – a holding pattern as her team is not sure what to do with her.  I am frustrated and sad but continue to be inspired by Ryleigh’s positive attitude and sense of humour. So I have to remain focused and hopeful.

Chloe will stay in Vanderhoof to look after the 3 dogs, Jakob, Remy, and Angel. Thanks to Christy and Al who are looking out for her.

Hopefully, this is a short stay — I am really enjoying my new job at NVSS and would like to get Ryleigh back there too.

Will keep posting as Ryleigh moves through this round of treatment.