DS had a small bowel resection when he was 12 years old due to stricturing. He had 10 inches and his appendix removed.
So, some tips:
- Ask about the appendix. They took DS's out since they were already in there. If he complains of stomach pain in the future, we know it's not his appendix. My son asked them to take pictures and the surgeon happily obliged. Yuck.
- He did an epidural for pain. Unfortunately, while it worked GREAT for the stomach region, it didn't help with pain from the catheter or sore throat from being intubated. He also had a lot of referral shoulder pain so we had to use another pain med (Tramadal?) on top of the epidural. It turned out he was allergic to something in the epidural as well. All that being said, I would still recommend an epidural. Note: they used lots and lots of tape to hold it in place on his back. Removing the tape was NOT fun at all (especially at 1:00am!). The other pain med option is usually morphine. I'm not sure they allow pain pumps in the pediatric world??
- Like Clash said, tell him about the catheter. It's uncomfortable and teens aren't used to those areas being looked at and touched, especially by pretty nurses.
- He'll wake up with an NG tube. My son didn't mind it too much. Personally, I had a hard time looking at all the green stuff coming up. DS's came out about a day early because he accidentally sneezed it up. Luckily the epidural kept the pain from the sneeze to almost nothing. Sneezing, coughing and vomiting are not fun after surgery. Laughing is a bit more tolerable... kind of.
- We were inpatient for 6 days. The first night is the hardest. You'll likely be up all night. Once you hit the 24 hour mark though, each day gets a little easier. Late on day two he was walking. By day four he was pretty bored. We maybe could have gone home a little earlier, but DS just wasn't steady enough on his feet on his own.
- Come up with hand signals and print a pain chart. Being intubated gave him a bad sore throat so he didn't talk for almost two days. I asked yes/no questions only and got thumbs up/thumbs down in response. A printed pain chart is nice because he just pointed.
- Write down everything you're told because you are going to be exhausted. After a day I lost track of the meds he was on. Had I been keeping track, we might have figured out the epidural thing earlier.
- Don't be afraid of the nurses or doctors. YOU are your son's best advocate. The nurses (usually) want to help, to keep him comfortable. Ask for what you need. Pleases and thank yous go a long way.
- Have him wear the hospital clothes the first two days (or even just be naked under the sheets). Bring his own comfy clothes for the later days. Bring athletic shoes for when he starts walking. Our hospital has a must wear shoes policy. Set a goal for walking. The first day maybe just from the bed to the door, the second day a lap around the floor. The third day three laps. Maybe get him a small treat or present for meeting his goal each day.
- We also brought a soft fleecy blanket from home, his own pillow, things to do (iPad, books, Legos, etc). For you, assuming you're staying there 24/7, a blanket from home, pillow, food, hand lotion, feminine products if needed, soap, shampoo, nail file, etc.
- Recovery will last 6-8 weeks. No physical activity. He won't be allowed to lift anything heavier than X pounds.
- Warn him that his belly button will never look the same. My son thought the scar is/was cool, so it wasn't an issue, but it may bother some kids. Initially his scar was about four inches vertically through his "new" belly button. It has since shrunk to about two inches. The plan was to go in laprascopically, but in order to examine his entire small intestine, they ended up cutting. He also has two keyholes that have essentially disappeared.
- DS hadn't eaten solids in almost a week prior to surgery due to the stricture, so he was more than pleased to be eating jello and scrambled eggs while in patient. The first two days, try to keep your food bland and not smelling nice. Essentially, he'll be NPO so smelling someone elses good stuff can be hard.
- Let him have visitors after the tubes and catheter come out. It was amazing how having a friend stop by improved his attitude and compliance! Also, take advantage of anything the hospital might offer like child life support or therapy dogs. Had I known a little Yorkie would be DS's biggest motivation, I would have requested a visit sooner.
Surgery gave DS his life back and it was wonderful. He did have a more "traditional" flare four months later which prednisone took care of, so keep in mind this isn't a cure or a final fix. This is to get him over his current issues and there will always be a maintenance med.
I think that's about it? I'm sure more will come to me as soon as I log off. Good luck!!!