The last cut

After Malou came back from Sasha's walk I could feel the sticky leak from the bag and we took her up try patch it. We try to just replace it once a day. However once the duoderm gets wet it is hard to fix another piece on top. So we pulled off the bag and the skin was improved over a few days ago.

Bag management is a tradeoff between time the bag is on and the deterioration of the skin if stomach juices push out from the seal and sit for sometime against the skin. So when we were exhausted with the bag we were happy to not have to replace it daily. However what we realised this week is that the success at keeping the bag on lead to bad excoriation / burning of the skin by the gastric juices. Theresa, our wound specialist at Sick Kids, suggested we remove the bag during the bath and so we have.

So the skin looked good but it was a chaotic affair as Sash had just had a drink and we would get the skin powdered with the stuff that heals the burn, sprayed with the no sting barrier spray and then a plume of milk erupted from her fistula opening, which is now the size of a pin head. These are perhaps the most trying times for Pam and I as Sash starts to cry, we cannot prepare the skin for the bag, and then when the bag is on Sash's first instinct is to scratch at the skin or pull at the duoderm. The bag sticky area is activated by heat so we hold our hand over it for a few minutes and then pick Sash up and hold her close to our belly.

After going to bed early, Sash was up per usual around midnight and as she turned to look at me I realised the entire left side of her outfit was soaked in blood as was the sheets. So once again, prepare the duoderm, clean the skin, afix the bag, seal the bag, redress her, redo the sheets. This pulling off of the bag during sleep is new. I thought maybe we could wrap some tensor bandage around her to keep the top and bottom edges of the duoderm sealed from her fingers but so far we havent gone that far.

Of all the complications, the fistula is the saddest because were it not for this hole in Sash's belly, out of which any liquid pours, she could have resumed normal food and been off the PICC line. That would have added to her comfort. She would still have a very compromised liver and GI bleeding but at least the TPN food would have ended, which hurts her liver. So the thought "what if she had never had a fistula" rears its head once in a while. She would have been so much more comfortable, we would likely have left hospital months earlier, probably returning after the next bleed. The surgeon who opened her belly to try help with the gastric bleeds were sad and surprised that she developed a fistula and it tremendously complicated her care and just keeps on keeping us awake at night. Good night.