Late at night — it has been awhile since I have posted. For some time I thought things were going smoothly and my life was becoming more calm and thankfully boring! But alas, that is not the case. I was so not ready for the phone call I received Thursday morning. It was a phone call from Ryleigh’s surgeon — you know it is not good news when the doctor calls you at home! Usually I am in contact with the nurses that take care of Ryleigh — the doctor was a bit of a shock. But once again I am thankful and impressed by the care Ryleigh is getting.
Ryleigh has had an “owie” on her incision site since her last operation. For the last couple of months they were certain that it was a granulation that would heal on its own. However, it never got better – in fact it became worse. It was bigger, odd looking, and continuously seeping some brownish, orange fluid. It is not painful but very inconvenient. I sent a picture to her ostomy nurse on Thursday morning as the sore was not getting better. Two hours after sending I got the call from Dr. Butterworth, her primary surgeon.
She explained to me that she is certain just by the pictures and the symptoms that this is not a granulation but in fact a vistula. She is concerned that it occurred not only because of the surgery but the fact that Ryleigh’s IBD is still in a flare and not managed yet. A vistula is when the skin layers from the bowel and another area like the skin become intertwined. She believes this is what has happened to Ryleigh – it is like Ryleigh has a mini stoma. A small part of her bowel is on the outside of her skin.
Ryleigh has not been recovering from her other surgeries as well as expected – Dr. Butterworth explained that this is most likely one of the reasons. Therefore, she will need surgery to fix this vistula — if her IBD is not controlled better it may come back. Ryleigh and I are leaving for Vancouver the third week of July. The surgery is scheduled for January 29 but she has to go the week before for some preliminary tests and preadmission. Chloe will not be coming this time.
Chloe is still suffering from arthritis like symptoms – extreme pain, swelling of most joints, nausea, and fatigue. It would not be reasonable to have her come to Vancouver as she is weak and would not be able to walk any distances for buses etc. Of course it will seem odd to not have her with us – Ryleigh and Chloe help each other so much in keeping spirits up.
Once again I am thrust into another medical situation that I do not want to be in — I am frustrated, angry, sad, and anxious but surprisingly determined and will continue to advocate for the best care possible for both my girls. My life is like the Never Ending Story intertwined with Groundhog Day. I can only hope for a happy ending!