September 17
Warning: This is very long and detailed for my own history and memory, you can skip to the pictures!
About a month ago we went in to have testing done on Emilyn for her bladder reflux. We found out in January 2011 that she has the same thing as Matisyn. Matisyn had quite a few urinary track infections and we decided after a year on antibiotics, when she was just over 2 years old to have surgery to solve the problem. She hasn't had problems since. With Emilyn we have only had two infections, and even those didn't culture out like they expected when they went to the lab. I really thought we were going in just to confirm what we already knew, which was that the reflux was gone in Emilyn. No such luck! I had to stand behind a big wall since I'm pregnant, while Matt held her hand for the big VCUG test with the big x-ray machine and painful catheter while they filled her bladder uncomfortably full. She was a trouper and didn't even cry. She just said it hurts, it hurts. I could see on the screen that pesky white line on the x-ray filling up and then the kidney turning white as well.
It turned out that the reflux had gone away on the level 2-3 side, but was alive and well on the 3-4 side (on the left). The radiologist said we would have to look at the renal ultrasound, but that we were probably still fine to just watch it as long as there wasn't any kidney damage. I did not expect there to be any since she has had so few infections. When they looked at the ultrasound they showed us her healthy right kidney. The left kidney looked pretty good too, except for one side not having as defined an outline. Then they started measuring and comparing to the last ultrasound from 18 months ago. They realized that her left kidney was more than 1 mm smaller than her right one and hasn't grown at all in those 18 months. That is a red flag, and is considered kidney damage. So off we went to an appointment at the urologist a couple of weeks later.
We met with the nurse practitioner, Ann Marie Hannon, up at Primary Children's because the urologist we wanted to see, Dr. Snow, whom we had for Matisyn, was booked until the end of September. I didn't want to wait until baby brother could show up at any moment. It turned out to be a good decision. She was wonderful, and spent an hour with us going over Emilyn's x-rays, our options, and checking her over. After weighing everything Matt and I felt like surgery was necessary. There are so many statistics and decisions to consider, but bottom line we didn't like the idea of daily antibiotics for another year, more of the awful testing to monitor her progress, and the possibility of more kidney damage while we watched and waited. I called the next day to see what the surgery schedule was going to be for a couple of months after the baby was born. I didn't think they would be able to get us in soon enough to get it done before he came. I guess because it was September and the start of school the schedule was pretty open. They had an appointment with the surgeon we wanted, Dr. Snow, a week from Monday. I scheduled the surgery, then got off the phone and cried and panicked. Surgery of any kind is scary, this one has a pretty tough recovery, Emilyn was just under anesthesia for her ears and adenoids four months ago, and I could have a new baby at any time! Despite my panic, I felt like it was the right thing to do, and I figured it would be better to be able to devote my time to Emilyn's recovery and not be split between her and a newborn if we waited.
She went into surgery early Monday morning. They booked her first (we checked in at 6:20 am, surgery at 7:30 am) because the recovery is longer. We were surprised that it was a same day procedure because of how invasive it is, but it turned out to be quite a bit different than Matisyn's where she needed to stay at the hospital overnight. Matisyn had two ureters on one side, and reflux on both sides, so she needed a re-implant on both sides. Emilyn's had cleared up on the right side so they were able to laparoscopically fix that side with a procedure called deflux where they insert a goo, for lack of a better word, around the ureter to keep it from backing up again when the other side is fixed. Then they performed the re-implant surgery on the left side. Apparently when they only work on one side they don't have to go inside the bladder, so there isn't as much blood and clots in the urine and the recovery is not as painful, that's why we could take her home the same day. It was also much quicker than we were expecting, about an hour and a half instead of over three like Matisyn's. They will have matching scars on the bottoms of their stomachs though.
I was so relieved when it was over and the doctor called us back to get a report. Everything went well, and it turns out that it was worse than what the tests had showed. He said he was surprised he could get the scope all the way up the ureter because it was so big (not the way it should be). It was also farther away from the bladder and kidney than he expected to find. We felt like it was the right decision, but it was so nice to hear the doctor say that it most likely would not have gone away in time, and that the laparoscopic procedure would not have worked on the left side, it needed the re-implant to be successful. They can't promise that the reflux was causing the kidney damage, but it can be strongly assumed since the right side is the one with the reflux still there and the side with the bad kidney. The surgery has a 98% success rate, so hopefully we have seen the end of any problems. We'll have to ultrasound Emilyn's kidneys in the future to make sure there is not any new damage and that they are growing normally again.
When I went back to Emilyn in PACU, she was still sleeping calmly. She came out of anesthesia quietly, and even though was in obvious pain, handled everything really well. I don't think she is typical when it comes to that. They sent us to a post op area to watch her come out completely, and she needed to drink and pee before we could go home. Her first scratchy words, she could hardly talk because of the tube in her throat during surgery, were to tell the nurse "slushie" and "orange" in response to what she wanted to drink. She drank a little of that, a Gatorade, and had a whole bag of IV fluids and still didn't have to go to the bathroom. I think she was afraid, and knew it would hurt. After about 5 hours or so at the hospital she decided she had to go. There were some tears and panic, but she was finally able to go, and there were only a few specks of blood. We were released to go home after about 6 or 7 hours at the hospital. Emilyn was pretty emotional, could hardly move on her own, couldn't stand or walk, and had to be carried to the bathroom even on a rotation of oxycodone, ibuprofen, and Tylenol for the first 24 hours. She turned a corner the second day, and has been able to move around more. Now on the third day we have dropped the oxycodone and are continuing to see improvements. We're so proud of her and how tough she has been.
I started having contractions the whole week before, I think because of the stress. I was so worried about surgery and recovery, and even more worried that the baby would come and we would have to reschedule. I am grateful to have it done, that everything went smoothly, and that Emilyn is recovering well. Thank you so much to all our family and friends for the thoughts, prayers, calls, and well wishes. They mean so much to us!
Emi has not liked the bandage on her surgery area, and has kept complaining that the band-aid is what is hurting her. We let her shower and take off the bandage last night for the first time, end of day 3, and were able to see what was underneath. The steri strips need to stay on for 10 days or so, and it's hard to tell with the blood what the opening actually looks like, but even with that she is happy to have it off.
No comments:
Post a Comment