Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.
Fizzer fizzing again
Sasha's fistula is draining again after about 4 days of empty ostomy bags. It is probably the water she sucked back at around 11pm last night, she has mostly refused food or water in several days. The fluid is clear, no blood. We had hoped it had closed but wondered how that was possible with all the water Sasha was drinking before. That would have been the second major and completely unlikely surprise of our return, after the GI bleeding stopped spontaneously on the second day.
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I heard about your story from Heather Rivlin, I'm another NILMDTS photographer. I just wanted to say I am so sorry for all you are going through. We lost our first daughter Hannah- due to multiple heart and pulminary defects, and have since had three more- my youngest being two now. Your Sasha reminds me so much of my young daughter- and also of Hannah- I just feel gut-kicked for you. It hurts my heart that another family has to go through this. I'm sorry.
ReplyDeleteHi Jennifer, yes its really not fair but for now she is hanging out and we are so happy for the time. Thanks for dropping by and leaving us a note!
ReplyDeleteRegards,
Jonathan