The morning of the surgery, our dear friend came over to watch Lincoln and take him back to her place for the day (he wasn't awake when we left). We checked in with Surgery Registration and got Jett ready for the surgery. He had to wear a tiny little hospital gown, and they gave him long yellow hospital socks. It was all very cute. I only had the poor camera on my phone, so here is a semblance of what he looked like.
Anyway, we talked to nurses, residents, doctors, anaesthesiologists, etc for about an hour before the anaesthesiologist came back. I was cuddling with my sweet boy and she had me just hand him over. That was the hardest part--handing my sweet little son to a complete stranger and watching her walk away with him. It was the only time I cried.
Chris and I joined the other parents in the waiting area and we laughed for a long time. I think we both deal with stress by trying to diffuse the tension. It was probably completely inappropriate.
About 5 minutes after I drifted off to sleep, Chris woke me up. It was 10 a.m. and the doctor came to talk to us. He said that they had a hard time getting an IV in, so the procedure didn't even start until 9:25. Then it was quick and easy. He was able to give us a plan to move forward, too, which may have been the best part of the day. Finally, FINALLY, we have some sort of plan. Along with his kidney/bladder issues, one of Jett's testes hasn't descended (poor guy, huh?). Well if it hasn't descended in the next few months, he will have to get surgery on that. We're looking at 2 surgeries to help his teste descend as well as another one to help control the reflux occurring into his kidneys. If the timing works, Dr. Lee may be able to combine one of the teste surgeries with the reflux correction. Each should be spaced about 6-9 months apart.
From there, we were taken to the recovery room to meet up with our sweet boy. From down the hall, we could hear him screaming. I couldn't pick Lincoln's cry out of a crowd, but I know every shrill of Jett's. They finished getting him dressed and finally allowed me to nurse him. We spent a few hours there and were taken up to the hospital room where we would be for the night.
The next 24 hours were kind of a blur. Jett literally slept from when we saw him at 11 a.m. until 3:00 a.m., only waking to get little meals here and there. I was really worried that he would be up all night and since I sent Chris home to be with Lincoln, I went to bed around 8:00 pm. We would both snooze for about an hour, Jett would let out a yell, I'd rub his head and we'd go back to sleep until the next hour. At 3:00, he woke up to eat and was wide awake, so I spent the next 2 hours playing and talking with my sweet baby. He would have continued to sleep solidly the next morning, but unfortunately, rounds begin at 6:00 a.m., so the poking and prodding continued.
That morning, I was able to get things moving quickly (I was a little pushy). He got his last dose of antibiotics, so we were able to get his IV out (I made them detach the line and flush it every so often so he wasn't as hooked up and tangled the night before). We also removed his oxygen (I ripped off his RR, HR, and O2 monitors every time I nursed or held him because we kept getting tangled up, but would reattach and reset everything when I laid him back down). Finally, we were able to get his catheter out. And then, we were only waiting for him to pee on his own. He finally did and we were discharged at 12:15 pm.
It was one of the scariest experiences of my life, combined with a long and stressful night without my husband by my side (our choice - our sweet friend offered to let Lincoln sleep at her house). But at the same time, when we got home, I could hardly remember that Jett just had surgery. He has no external markings and was only a little fussy. It took about a week for his sleep to start getting back to normal, but other than that, he has done really well. I am so glad this was kind of a minor surgery. It is preparing me for the bigger ones to come. As we were leaving, the baby in the bed next to us got replaced by a little boy probably a few months older than Lincoln. It broke my heart to know that Jett will be that age for the last couple surgeries. I would rather get everything out of the way now, when he doesn't really remember it, but I know that his little body needs to grow as much as it can before then.
**On being an advocate:
In OT school, one of my teachers was probably the biggest advocate for disability rights. She went on marches, ran from the police, that kind of thing. We were very encouraged to be advocates for our future patients and to teach them to advocate for themselves as well. Well, I am not an outgoing person anymore. I stuck with a crappy doctor for myself because I didn't want to offend her by my leaving. Anyway, that is not the case when it comes to my kids. As I mentioned above, I am not afraid to rip useless wires out if my screaming baby needs me. Although I am not a nurse and do not know all things medical, I think my background had provided me enough knowledge and enough confidence to ask questions and fight for my son. For instance, the nurse wanted to keep the IV line it, even though Jett didn't need the fluid drip anymore. She was a little surprised when I asked her to flush it and take the line out. Same for the monitors. I knew that I would be watching Jett carefully when he was in my arms, so she may as well teach me how to hook them back up when I was done. I felt comfortable doing it because he had been stable the whole time. I know my limits, too, I promise. Anyway, for the first time in my life, I feel like I can finally fight for someone. I am going to get Jett the best medical treatment I can and I am going to make him as comfortable as possible. It feels good to advocate for someone. I think I am taking it a little too far, at times, but I am learning how to moderate it. I am sure that some nurses and receptionists tell their colleagues to watch out for me, but I am not going to apologize for inconveniencing them to help my son.
Update: Three weeks following the surgery, Jett had an ultrasound and
post op visit to the doctor. What we learned from that trip is that the
surgery went well. The ureterocele inside of his bladder is gone.
Once urine enters his bladder, it exits through his urethra, instead of
pooling inside of the ureterocele. This has also allowed the dilation
in his kidneys to decrease (they are still swollen, but not nearly as
much). For all intents and purposes, the surgery was successful and did
what it was supposed to do. Jett most likely still has reflux and that
will be followed up in a year or so, but at least his obstruction is
gone, which is the first step.
