Another excursion to OSF today to have Sara's stent removed on the right. As soon as the elevator doors opened and we stepped out, the nurse was waiting to take us back to pre-op! Kinda felt like someone was stalking me.
Sara removed her coat and shoes and weighed in - 27.8 pounds! Best news all day. One more pound and she will finally be caught up to where she was before her Boston surgery. She stepped off the scale so the nurse could check her height. They have a measurement chart painted on a mirror. Sara stood in front of it, flipped both sides of her hair back, and turned around to back up to the wall. Shannon and I just stood there dying laughing!
Surprisingly we went to a totally different pre-op room that we have never visited before. Sara meandered to the playroom for a bit and we found that the previous occupant had completely emptied the toy shelves and spread them all over the floor. Dr. Rhee nearly tripped over something while getting to Sara to mark his initials on the right side of her tummy. We expressed our concern over how Sara has been feeling over the past week. About 5 times she has run a low fever and complained of extreme pain, sometimes to the point of tears and curling in a ball on the couch. There has also been blood in her urine. Dr. Rhee asked if she has been pooping every day, thinking she could be constipated. He also said it could be from the stent. Call him in a few days if it continued.
Dr. Rhee was frustrated that I allowed Sara to eat breakfast, even
though I was told she could eat as long as she was done by 7. He was
running early today and could have moved surgery up if she hadn't eaten.
He is going to schedule any future surgeries for first thing in the
morning because he doesn't want her to go 8 hours without fluid as it's
not good for her kidneys.
After he left Shannon and I both agreed that we know Sara better than the doctor does and her level of pain and other symptoms are enough for us to be concerned. I asked the nurse to call Dr. Rhee and say we wanted an x-ray today rather than waiting a few days and making another trip. I felt good about exercising my mom power and listening to my gut.
3:00 finally arrived and Sara told the nurse she wanted a piggy-back ride back to the OR instead of a wagon ride. The nurse said she was probably not the best person for that job and allowed Sara to go into a storage closet to pick any "ride" she wanted. I thought it was odd that she would turn a piggy-back request down from such a little peanut but appreciated her hesitation when the other nurses started teasing her about her ability to trip over imaginary lines on the floor!
10 minutes of putting in an IV and giving her sleepy medicine--peach this time. 3 minutes of removing a stent. 15 minutes of post-op discussion with the doctor. He said the x-ray showed that she did not have any poop in her so the pain definitely wasn't from constipation. Uh-huh. He isn't sure why she is having pain. Watch it for a few days and let him know.
Our biggest question is what do we do if faced with an emergency situation and one of the stones begins to pass, causing a blockage. He said there is only one weekend a year that both he and his colleague are out of town. Otherwise one of them is always available. And the emergency solution would be placing a stent to allow urine to drain while planning for what surgical option may need to be considered.
I asked what kind of time he wants to wait--1 year, 5 years? He really doesn't know. He wants Sara to get bigger. If another robotic surgery is needed down the road, the entry point at the opening of the kidney was already a very tight space for the surgeon in Boston. Now that surgery has already been performed, there is scar tissue there making a repeat procedure 3 times harder until some healing occurs. For sure we would not do both kidneys at once because it is too dangerous. He feels at some point we will need to get every last kidney stone fragment out to prevent recurrence. That will likely be either thru a repeat robotic procedure or by opening her up, removing the kidney, cutting it in half, and suctioning the stones out. A very risky procedure. He is unsure what effects the waiting will have on her kidney function.
In the imminent future, she will have an ultrasound in about 4 weeks. She also sees the nephrologist in mid April for another round of blood tests to check in on kidney function.
And so we wait. The waiting has become harder on me lately. Every time she runs a fever, every time she complains of pain, I am uncertain what I should be doing about it. Faced with no answers and nowhere else to turn, our faith is what remains to stand firm in all this uncertainty. It feels like the news we received in the NICU regarding Adam's Grade III IVH when we learned he had a 35-40% chance of CP but symptoms would not present for possibly a year or two. At that moment I couldn't even imagine how I could exist without the wondering being on my mind every single day. But it faded and we lived a normal life. That is what I will be working on now.