In my previous post I shared how we would start clamping Julia’s superpubic (SP) tube over the weekend. Well she rocked it and Dr. Borer decided she was ready to have the SP tube removed. Yay! Julia is now completely tube free! We celebrated with a bath, which she loves. Continue to keep her in your thoughts & prayers, the next 48 hours we have to watch for any signs of infection. If she continues to do as amazing as she has then we get to go HOME in just a few days!
Today was a big day. Almost exactly one month after Julia’s bladder repair surgery, her cast came off! Yay! We are now back to being able to change diapers regularly, take baths, wear bottoms to clothes, cuddle more easily, and see her kick her little legs. Oh how I’ve missed seeing those cute little legs.
We started off the day seeing our favorite urologist, Dr. Borer. He did the honors of removing Julia’s cast and lifting her out of it. Her little legs started moving as soon as they were free. Next up was an ultrasound of her kidneys and bladder to make sure everything looks good post surgery. We then took her to get an x-ray with dye going through her suprapubic tube to see if it drained from her bladder out the way it should.
After all of that we went back to see Dr. Borer. He couldn’t hide his excitement. Everything is looking great. Go Julia! Next step was to start clamping her suprapubic (SP) tube. Dr. Borer clamped it and sent us on to our final appointment, orthopedics, and told us to come back in two hours. Orthopedics was quick and easy. The cast was more or less gentle on her sensitive skin and her pelvic bones look good.
Back at Dr. Borer’s office we checked her SP tube for urine and only drained 4 milliliters. We then checked her diaper and there was urine in it. Yay! Never did I think I would get so excited over a wet diaper. Dr. Borer showed us how to cap Julia’s tube and drain it. We are now checking it every two hours like we did at his office and recording the results, with the exception of over night where we attach the bag back to the SP tube to drain. Over the next few days we will share the data with him and slowly increase the time in between checking the tube until it can be removed. Once that happens, we’re coming HOME!
For now we are just grateful for good news and counting down the days until our sweet little family can be together again.
Julia had another Urology follow up appointment yesterday and everything continues to look good. She was weighed without her Spica cast and she is now 6 lbs. 10 oz. Yay for growing! The dressing around her SP tube was also changed (see picture). Dr. Borer was keeping Julia calm, Lauren was changing the dressing, and Rosemary was assisting them both. Those three people have been our Boston family and I don’t know how we’d get through all of this without them.
We will have about two more follow up appointments before the next big step. Next Thursday, the 27th her cast will come off (YAY!) and Julia will have her ultrasound and x-ray to check on the progress of her bladder healing. If all looks good we will do a few days of testing her bladder by plugging the SP tube. If her bladder does what it should and urine goes where it should, the tube comes out. And that means we get to come HOME!
We of course will be coming back to Boston as often as Dr. Borer needs us to for follow ups, but we’ll be home. Our fingers are crossed the first weekend in May will be when Julia gets to finally see South Carolina. Please keep her in your thoughts and prayers during our home stretch with this visit. xoxo, Tori