J turned 2 in February and had his surgery (reimplantation of duplicated right ureters and removal of very large ureterocele which required significant bladder reconstruction) on April 2nd 2006.
Here is how things went for us…
Day 1 (before surgery)
Going into surgery was MUCH easier than I expected for 2 reasons. I share them because they are definitely things to ask about before surgery for those of you whose children haven’t had it yet.
First, they gave him an oral sedative (Versed) while we were waiting that morning, so he got quite happy (and hilarious) and didn’t mind separating from us at all. I was expecting a scream-fest, but he never cried at all. That made things so much less stressful for Mom and Dad too! Second, they put J to sleep using a mask in the operating room, and THEN they put in the IV while he was already asleep. This is standard procedure at our children’t hospital, but just in case it isn’t where you are, it’s definitely something to ask about!
J tends to be a really “difficult stick” when they draw blood, so I can’t imagine how much stress it would have caused if they had put in an IV while he was awake. He was so anxious before the sedative that they couldn’t even get an accurate temperature, couldn’t hear his heart or lungs, etc.
Day 1 (after surgery)
J was in the OR for about 4 hours (which included time to put in the IV and caudal block), a little longer than we anticipated because the doctor had to do a lot more reconstruction with his huge ureterocele than expected.
He had a Foley catheter, an IV in his arm, and 2 stents that drained out through his belly.
When we got to him in recovery room, he was crying. No matter what meds they gave him (valium and morphine), he continued to cry almost constantly for several hours.
As he woke up more, we could see that he was pulling his knees up, which the nurses said was an indication that his pain was due to bladder spasms. So although everything appeared to go right with the caudal, we assume that it didn’t take.
The pain management team at the hospital felt awful about it and definitely gave us the impression that it is unusual for it not to work, so don’t assume that a caudal isn’t a good method of anesthesia, we were just one of those rare cases where it didn’t work, just like some women’s epidurals don’t take during labor.
For the first 36 hours or so, pain was a big problem for us. We had to make sure that he got his meds the minute he was allowed to have them, and a couple of times, they called the doctor to get approval to increase or give his meds early.
We had no problem getting him to drink (I brought strawberry syrup for his milk because he loves strawberry milk at home.) The doctors and nurses were quite impressed that he was drinking so much…they even told us not to go overboard with the fluids so that they wouldn’t put too much pressure on his bladder.
Overall, day 1 was really difficult, because he was crying in pain a lot of the time despite the best efforts of the nurses and doctors. But for such a major surgery, it was pretty much what I expected.
TV helped a LOT to distract him, especially the portable DVD player we brought with his favorite show (Max and Ruby). :)
The worst part of it all was that J stayed awake from the time he got to recovery room until 3:30am the next morning. I don’t know how in the world he held out that long in spite of the anesthesia, morphine, valium, etc., but he did. Long night.
Day 2 was another tough one as far as pain goes.
By the afternoon of day 2, J was having some periods of seeming to feel pretty well. We were able to take him on a walk in the hospital lobby, and for the rest of the time, he enjoyed taking wagon rides up and down the glass elevators at the hospital. Just as he was starting to turn the corner, he pulled his IV out, and thankfully they let us try to go without it as long as his pain control was okay on oral meds (valium, tylenol with codeine, ditropan) and he was drinking.
He was much happier without the IV and some of the monitors. I think those bothered him more than the pain. I am really glad he pulled his IV out, because otherwise they would have left it in 2 more days.
On day 2, J took a good nap and then pretty much slept through the night like normal.
J started to seem more like himself.
He was still having periods of lots of pain, but he was also having some really good times. Lots of wagon rides today.
The biggest problem at this point was his dislike of being in his hospital room and of his Foley catheter and stents (which were still attached to bags at this point).
He continued to drink but refused to eat. On top of not eating, codeine causes nausea, and oral valium tastes TERRIBLE, so J started vomiting about every other time we tried to give him meds. Thankfully, he would vomit immediately upon swallowing, so we were able to give him another dose right away since we knew he hadn’t gotten any.
The doctor removed his Foley catheter in the morning, and cut his stents loose from their bags so that they just drained into his diaper. This REALLY made him feel much better!!!
He still wasn’t a big fan of walking, but he wanted to be in the wagon being wheeled all around the hospital all the time.
It was obvious when he was having spasms, but he did enjoy himself playing today.
The doctor said as long as the day went okay, J could go home this evening.
J vomited two more times when given his meds, but other than that, the day went very well.
When the doctor came back at 6pm to give us his final blessing before sending us home, he was told about the vomiting, and he told us that we needed to stay another night. We had already loaded the car, and J’s precious blankie was already at home in the washing machine. AGGHH! But thankfully, after a chat with the doctor about how I felt that J would eat at home (he ate almost nothing in the hospital), and how I really felt that he would do better without the anxiety of the hospital, the doctor agreed that it was okay to go home.Whew!
We got home shortly before bedtime, and J was so happy and didn’t seem uncomfortable at all! He slept through the night in his own bed.
He came home on ditropan 3x/day, motrin, valium every 6 hours, keflex 3x/day, zofran (to try to help with the vomiting his meds up), miralax (which we didn’t give him for a few days anyway because the antibiotic was causing diarrhea), and he had a prescription for tylenol with codeine which we never gave to him at all.
He really wasn’t having any incision pain, just spasms.
Organizing and planning out all his meds was a little overwhelming for me that first day or two. I had to write down EVERYTHING that I gave him and write out a schedule so I could plan for when he was due for something. I sneaked a dose of ditropan in to him in the early morning hours without waking him all the way to try to prevent him waking up in pain, but other than that, I didn’t wake him during the night for meds.
Day 5 (first full day at home)
J was happy as can be! He cried when he had spasms, but they only happened a few times a day, and he played happily with his sister the rest of the day.
He vomited his valium again, so we got the genius idea to get the doctor to switch him to pills.
He was on .6mg in liquid, so the doctor said he could take 1/4 of a 2mg pill (so it was a lower dose, but not by much). This worked SOOOOO much better! We put the timy 1/4 pill into some chocolate pudding, and he swallowed it right down.
Day 6 and 7
He was happy, just a few spasms.
He did still require some extra supervision since he was still on the valium, which caused him to act kind of drunk, falling down more than usual and doing out of character things, like eating orange play-doh because he thought it was a carrot. :)
Went to the doctor to remove his stents.
From the time we got home this evening after getting his stents out, he was like a new man! Running around and happy just like nothing ever happened!
Spasms were few and far between, and MUCH less severe.
Discontinued the valium, and he did just fine without it.
The blood in his urine pretty much went away on this day.
I do home daycare, and I took my other kids back on this day, and he did just fine playing with them.
So that’s our story.
We had 2 days of misery, 2 days of not-much-fun, about 4 days of almost-back-to-normal, and then it was basically over.
He is doing really well. He does still have spasms, but they’re just barely enough to make him cry. He grabs himself and says “My doctor hurts” and gets upset for 30 seconds or so, and then it’s over. This seems to happen a lot just before and just after he goes to the bathroom. It’s complicated by the fact that he has decided to potty train himself in the midst of all this (started about 10 days before surgery), so he is extra-conscious of trying to control his urine and bowels right now. He actually seems to be having more spasms this week than last week…don’t know why, other than maybe the potty training issue.
For those of you who are about to go through this surgery (yourself or your child), be encouraged! It won’t be fun, but chances are, you will be AMAZED at how quickly it will be over! And the relief of knowing that it is behind us after 2 1/2 years of waiting for it is so nice! I am so glad that I had this group to help prepare me beforehand, and I hope that my experiences can help someone else.
See also stories from other families.