Sunday, January 20, 2013

Adam's stent

Adam was supposed to get the stent in his right ureter to improve urine drainage from his blockage on December 28. However, we postponed because of things in Boston being delayed. I can only manage 1 child screaming in pain at a time if I have the choice.

We rescheduled the procedure for Monday, January 7. For some reason they make you arrive at the hospital 2 hours prior to a surgical procedure. We were obedient and followed the rules. At 2pm we registered and headed to the surgical waiting area. They had a cool treasure map to talk Adam thru all the steps that he would be experiencing.

We finally went back to start pre-op. He was weighed and measured. He picked a cool hat. Then we were placed in a private room to take vitals and discuss all the other details.

At 3:15pm we were totally done with the pre-op process, dressed, and ready for surgery, which wasn't scheduled until 4.

Only to discover that the doctor was currently in with a surgery that would take at least 45 more minutes, then there was another patient, then Adam. Thank goodness for iPads!

Finally around 5:30 they took him for surgery. Thank goodness. He was really starting to complain he was hungry and I don't think Shannon could have shown him any more pictures from Cars movies!

Surgery took about 40 minutes. It would have been shorter but the first stent they tried was too large and they had to track down a different one somewhere in the hospital. Since it was so late, we got to break the rules and both of us got to see him in the first phase of recovery. He was doing pretty well tolerating the pain so they moved us on to the 2nd stage of recovery.

Then he wasn't so good. Adam's pain increased and we had to give him IV pain meds since they gave him Tylenol during surgery and that put him at his limit. She would give him some meds, he would relax and sleep. He would wake up in pain, she would give him some meds, he would relax and sleep. After it happened a third time, we said enough, we are just chasing our tails here and this is just delaying getting him home. The nurse was frustrated that they give Tylenol in the OR because it limits them post-surgery. We just wanted to get him home and by then we could give him some Tylenol with Codeine and put him to bed.

He had gone to the bathroom once at the hospital. We had him loaded in his car seat and he had to go again. Off I went carrying him (gently) all the way to the bathroom. Thankfully, Shannon met us on the way out and carried him back to the car.

Once we got home he was happy to see some visitors had stopped by and decorated his bedroom door for him. This is about all he felt like doing. He snuggled in bed with us the first couple nights so we could comfort him when he would wake in pain or have to go to the bathroom.

Robotic surgery was scheduled for February 21 so we could get past Sara's lithotripsy procedures. After 48 hours of still shaking and screaming in pain when he went to the bathroom, I had him pee in a bucket to see just how much blood was mixed in the urine. My stomach turned when it was the color of a deep burgundy wine. The nurse had told me the pain should have subsided by then and we should call if there is that much blood. Dr. Rhee said the nurse was completely wrong. He may have that much pain the entire time he has the stent - 6 weeks to surgery and 4-6 weeks to heal after. And that much blood is no big deal.

I felt absolutely sick that I was going to have to watch Adam in that much pain for that long. Why didn't someone tell us? It's so frustrating to keep having these instances where we could have known more. I shouldn't have to teach my kids at the age of 3 that sometimes God takes away the pain and sometimes he makes us brave to handle it.

We started a new regime of pain medication, gave him some of Sara's oxybutyin for bladder spasms, and moved the surgery date up to January 17. Thankfully, after a few days and a whole lotta praying for Adam's penis, it improved to where it was tolerable!

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