Yeah, it is finally time to go home, now what???? We were thrilled to be taking Abby home, but scared to death at the same time. The nurses loaded us up with all the supplies we would need and literature on the signs and symptoms of infection. We were given a follow-up appointment for one week later and off we went. Abby's back was so padded that the 2 hour car ride home was no problem. By the time we left the hospital she was up walking and playing and other than being quick to tire and in some pain around the time her medicine wore off, she was pretty much back to herself. We did have a lot of questions once we got home. Hopefully these questions/answers will help:

*What medication do they need to take and how do you get your child to take it?

The medications will vary by child I am sure, but as a general rule they will be taking an antibiotic for 10 days and pain medication as needed. The medications are administered through a push syringe at the hospital and we found this just as easy to do at home. The medications are given around the clock so there will be getting up in the middle of the night. We found using a flashlight to give them to her at night was less disruptive then if we turned on the room light. We measured the medicine out before we went to bed and kept it in a small cooler in our room so we could just climb out of bed and be ready to give it without much disruption. Abby did not used to be a good medicine taker, but this experience has made her a champ! I think the biggest thing to remember is to be firm. If they think they can complain and cry enough to discourage you from your effort they will do so each and every time. We did a few things to make it easier. We had a drink ready for her to act as a "chaser" she couldnt have the drink until she took the medicine. We also gave her a choice. We would say "do you want mommy to do it or daddy to do it?" As time went by the easier it became. Eventually there was no crying at all and she would readily open her mouth. A great deal of praise went a long way for us too.

*When can my child take a shower or a bath?

You will find that each doctor has his/her own time frame for these activities, but in general your child will have to be sponge bathed, avoiding the wounds, for 2-3 weeks after the initial surgery (Usually a week after the outpatient follow-up surgeries). You definitely won't shower your child before going back for your follow-up appointment (at least for the 1st surgery). A good rule of thumb for taking a bath is to wait until all scabs are gone. The reason for showering before being able to bathe is that a wound that sits in water is much more susceptible to infection. Tub water is dirty (even if you think it is not), so is swimming pool water (regardless of chlorine). You don't want any germs to get into the wound to cause an infection. A shower is okay sooner because clean water is running over the wound. The steri strips come off of the wound usually at the same time that the scabs are closed, which for Abby has taken from 3 to 4 weeks (keep in mind she had been showering about 4-7 days after surgery).

You can have lots of fun showering your very young child. A hand-held shower will make things a lot easier so you can direct water where you want it (they sell extra long lines at places like the Home Depot that can be attached to the hand held shower so it can rest on the tub floor versus dangling in mid air when not in use).

*What restrictions will my child have after surgery? Again, each childs surgery is different and I can only speak to the restrictions my daughter had after having the VEPTR implant (you must ask your doctor for your childs specific restrictions). She did not have to wear a brace or any other restrictive device after surgery, which is the same for almost all VEPTR procedures. Immediately after the surgery and several weeks following we were not allowed to pick Abby up underneath her arms. All lifting was done by putting our arms under her butt or through her legs. Mainly this was to prevent discomfort, but also to give time for her implants to "solidify".

She was not allowed to do anything that would cause excessive flexion (bending) of her trunk, for example: leaning in to reach the bottom of a toy chest, or laying over a large ball and rolling forward, or summersaults. Even now she is not allowed to participate in gymnastics that will make her do forward bends, summersaults, or headstands. This does make us sad because Abby wants to do them all the time. However, we don't dwell on what she can't do because she can do excellent log rolls, splits, and walk the balance beam (she is easily distracted to these activities and gleams with pride when she is told that no one does a better log roll than her!)

*Were there any other issues related to the surgery that my child might experience?

Every child is different. Have we said that enough? There are a few things I think are important to add. We found that the first few weeks after surgery Abby began to experience night terrors. We have no idea of knowing if these were related to her surgery or just a coincidence, but we found that there were several times in the week or two after coming home from the hospital that Abby would wake up crying inconsolible. We do not believe it to have been pain related as she was medicated. We really don't know what it was as she was not old enough to express her thoughts. We would be interested to know if anyone else noticed similar behaviors.

We have found that several months after her first surgery and then again after her 2nd surgery, she began to verbally express some fears about her back. A few months ago Abby woke up in the middle of the night and was crying, when I went in to check on her she was not awake, but was saying something about not wanting to go to the doctors anymore. Again a few weeks ago, out of the blue she started to tell me that sometimes she gets mad at the doctors when they touch her back and that she gets mean to them when they want to touch her. I tried to explain that it is okay to feel that way and I wanted to explore her feelings further, but being a toddler, she didn't want to talk about it anymore and changed to subject.