It has been a whirlwind this week.  I thought that as Ryleigh recovered from surgery my responsibilities would decrease as a nurse/advocate and become more mother.  However the last few days has been filled with meetings with health care professionals who are helping us make the transition to leaving the hospital. 

Ryleigh has 5 teams responsible for her care.  Each day I have needed to discuss, take notes, and ask questions.  Ryleigh has had moments of pure “awesomeness” and her sense of humour has been so fun.  However, there are other moments where she is fatigued, still in pain, and  having issues with the “leftover colon/rectum”.  This has been scary for all of us as we had assumed, naively, that once she healed from the surgery all would be better. 

Not the case, however this is better than before – much better.  Just had expectations that are not quite where we thought they would be.  Ryleigh is having some difficulty keeping food down – the last two evenings she has been in writhing pain.  The pain seems to contribute to the nausea and she vomits.  This happened on Wednesday evening and her team thought that it was a one time thing – perhaps she ate too much?  So no concerns.  But tonight she is dealing with the same issues and they are having to give her anti-nausea meds and pain killers.  There seems to be an unknown as why this is happening.  Of course, I am concerned and will have to ask questions tomorrow.  Thankfully we need to stay down her for a few more weeks.

I learned today how to put her ostomy pouch on and how to take care of it.  Ryleigh is not comfortable yet with the task so Chloe and I learned all about it and we will work with Ryleigh as she gains strength and comes to terms with things.  We have to go back for a couple appointments to be “tested” on our skills before we can come home. 

Ryleigh also needs support to help with her nutrition.  She has been malnourished for a long period of time and we have to make sure that she continues to grow and develop by eating and drinking the proper amount of calories.  She also needs nutrient dense foods but is limited with foods that could cause blockages in her stoma. 

Ryleigh is also dealing with being deconditioned.  We have been making plans to get Ryleigh out and about.  We naively thought that we could just leave the hospital and magically our Ryleigh could walk, play, to school work, shop, and visit various places.  The physiotherapist has come by and shared information at what will be best for Ryleigh.  We need to have a wheelchair for her – so she can walk for a bit and then rest when she needs to but still be out and do things.  Ryleigh seems to know what she can manage and we have to work with her to slowly, very slowly start to rebuild her muscles, energy level, and strength.  She was also given some stretches and exercises to help develop her muscles even if she is in bed resting. 

The process of recovery was something I had anticipated but am surprised by the amount of details that are involved as well as the time and energy needed on my part to make sure things happen. Hopefully once we leave the hospital there will be some time for me to rest and rejuvenate so we can move on to rehabilitation.  

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