Last Monday we had another trip to OSF for Sara's shock lithotripsy on the right side. Thankfully, the ice melted in time for Grandma and Grandpa Mollenhauer to arrive from Iowa to help with the craziness of my schedule for a few days. In typical fashion, I got a phone call at 1:00 asking me what time I would be arriving. I told them I was planning on a 3pm arrival for our 4:30 procedure. She asked if anyone had called to inform me that the doctor was running very ahead of schedule and could I get there as soon as possible. Ummm...no! I was still at work and Sara was in the middle of napping. I told her I would get there when I could and thought in the back of my mind 'I wonder if the equipment is even there.' Hang onto that thought...
We met Shannon at the hospital at 2:45 and spent a short time in the waiting area. I love this picture of Shannon and Sara. We have come up with all kinds of captions that could go with it...Daddy, can I have a pony?...Daddy, I'd like to date...Daddy, can I borrow the keys to your new car?...
After a short wait, we went back to pre-op and started the usual routine. They were actually going to take us to the same holding room for the 4th time but Sara asked if we could go to a different room! Sara climbed right up in the chair and started answering the nurse's questions.
And then we waited. And waited. And waited. Remember how I got a call at 1pm requesting we come right away? Then we were there and ready by 3:15?
4:21pm. Some of the staff enters our room to say they found out the equipment needed isn't even in Peoria and won't be delivered until 6pm at the earliest. We can either continue to wait it out or we can get Sara re-dressed and come back on Thursday. Sara was doing pretty well so we decided to head to the play room and kill some more time. Shannon and I took turns leaving to grab some dinner.
5:50pm. We went back to our room to watch TV, hoping it would be soon. Sara picks to watch some cooking shows on HGTV. Did she forget she hasn't eaten since 8am?
6:10pm. The nurse checks in. She tried calling back to the OR and no one answered. We are hoping that means they are setting up the equipment.
6:30pm. Still no answer in the OR.
6:45pm. Finally the wait is over and they come to take Sara back in a red wagon. Shannon and I walk out of the pre-op area and back into the waiting room that we entered 4 hours earlier to find...
Hello? Anyone? Empty. Totally empty. No staff. No volunteers. No one else waiting. Lamps were unplugged. TVs were turned off. It was kind of creepy. I walked past the desk and saw this...
After hunting down some cherry cheesecake for the wait, we heard the doors behind us open. The remaining 4 nursing staff walked out with their bags slung over their shoulders and said they were leaving for the night. "Just remember to answer the phone if it rings."
A bit later Dr. Rhee came out and talked with us. Another kidney stone had formed on the right in the past week. And the large one he told us about last week had grown to about 9mm, or nearly 1/2". He wasn't sure how the procedure went this time with breaking up the stones so he wanted an x-ray in a week. We continued to dialogue about Sara's unique case and if there were any new ideas. Shannon said "There must be another child somewhere that has experienced this." We watched Dr. Rhee shake his head no, responding "I haven't found one." I can't quite describe how it makes you feel to hear a doctor tell you something like that.
The recovery process went well. I had a bit of an argument to convince the discharge nurse that I did not want a prescription filled for Tylenol with codeine because she wouldn't need it. But one thing I have learned is how strong Sara is and how she can handle pain better than most kids.
This time around she had a larger open wound from the contact point of the shock equipment and a good-sized bruise, but healed pretty quickly.
Yesterday we had the follow up x-ray and got confirmation of Dr. Rhee's initial thoughts after the procedure. The left side still looks very good and the particles are well dispersed. However, the right side did not break up well and she will most likely need another shock treatment on the right side. He was in the process of sending the x-ray to the Boston surgeon so they could consult together about next steps.
I also had an impromptu meeting with the nephrologist, Dr. Gordillo. The results of Sara's 24 hour urine test did not reveal anything new from the previous test. Some of her levels were slightly improved but there is still nothing that stands out as an indicator of something else causing the stones so quickly. Everything is still pointing to struvite stones, formed by her initial 3 urinary tract infections. The antibiotics she takes daily now do not kill the bacteria currently in her stones, they just help prevent more infections. He believes the bacteria in those stones are breeding more stones. His thought at this point is that an extreme hydration of the kidneys to flush them may be necessary in order to completely get rid of the stones and every last bit of bacteria. If she can't take enough water by mouth to do that, he would want us to consider putting in a G tube. That would involve a surgical procedure to cut a slit in her tummy to insert a tube that would provide a port directly to the stomach. It would have a button-like opening flush with her skin that we would put water into multiple times a day. Hearing that was pretty emotional for me to process. Now that I have taken a breath, I am waiting to hear back from the doctor as to how high he would want her water intake to be in order to avoid that. We are also waiting to hear back from Dr. Rhee and the Boston surgeon regarding next steps for stent removal and shock lithotripsy.