How many "gadgets" do you *really* need?

[pmsmom]

Ok, so I'm still reading up on different things and I know I worry about the kookiest things, but what kinds of "gadgets" (grabbers, toilet aids, etc.) does one really need for their child at home after surgery?

I realize this all depends on how the child is doing, but before I plop down a lot of money for things that she might not need, I'd really like your opinions (especially in the toileting aids dept.).

If you've found anything especially useful, would you please send a link?

Of course, I'm already equipped with the fruit-eze!

Thanks to all!
Marian

[Sherie]

Hi Marian

The things I found essential were a shower seat, a shower head on a hose and gel packs that could be heated in the microwave or put in the freezer.

If your daughter (sorry if you have a son, I dont' get on here as often as I used to) is menstruating, you will want sanitary napkins, my daugher had a very heavy period starting several days after surgery and lasting about a week. She could not bend at all and I had to help her with her personal hygiene for about a week after we got home but after that, she did fine. She used the 1/2 bath which has a wall on one side and the vanity on the other to raise and lower herself from the toilet. I don't think this is as much a problem if the fusion won't go into the lumbar area.

I also helped her in the shower for about a month, not only was she weak but she would get dizzy from being anemic.

Don't worry if those steri-strips don't fall off, hers stayed solid for more than 4 weeks, I finally pulled them off and used rubbing alcohol to remove the adhesive. This was not done all at once, only as she could tolerate.

I think you won't need much if you'll be home to care for her, you can get most of the things she'll need and they learn quickly to bend at the knees to retrieve items from the floor.

My daughter was anxious to have her independence back and that's a big incentive. I can't think of anything else at the moment (I'm at work) but will post later if I do.

Take care
Sherie

[Carmell]

Marian,

I agree that you won't need many "gadgets" for him post-surgery. Once she's home, her recovery will take off. Some people like a softer mattress to sleep on, while others find a sofa, recliner, or other place to sleep more comfortable. Most do fine in their own bed.

If you have stairs in the house, you may want to arrange for her to have all her conveniences on one level. Avoiding stairs for a few days/weeks will help reduce the risk of falling. Falling is BAD.

IMHO, it is VITAL/CRITICAL to arrange to have laxatives SCHEDULED for immediately after surgery (as soon as they are able to drink liquids). Besides the anesthesia and narcotics that make the GI system go to "sleep", they are not as mobile as usual and the bowels don't "wake up" well. Staying ahead of the constipation is MUCH better than letting it get out of hand. Only people who have emptying conditions don't need medication to help keep them "moving". Constipation can be PAINFUL. It pushes on the incisions from the inside. Not fun. Constipation also makes it much more difficult to drink enough (drinking is very important) or eating well. When you're full of stool from the bottom, there isn't much room at the top to eat more. This is STILL something we struggle with after 30 surgeries. However, it is getting better.

Having lots of pillows around is helpful. If she needs to cough or sneeze, grabbing a pillow and hugging it tight helps reduce some of the stress on the surgical sites. Pillows are just nice to have to make any seat more comfy.

Remember the lecture - "No BLT". No Bending, No Lifting, No Twisting for as long as the doc says. She'll find she moves in a BLT movement more often than she realizes. Bending at the hips to brush her teeth (for example) is okay. Log rolling out of bed is a must, etc.

Remember that every surgical experience is different. You can learn general information to help you mentally prepare, but your experience may be different than anyone else's. Sending our best your way.

(Sneaking back to change gender - sheesh)

[pmsmom]

Thanks, ladies. This is really helpful. I'll be sending this link to my email so I can put it in my "scoliosis" folder.

Right now we've been told that my dd has a left thoracic curve with no real compensatory curve. All the doctors told us would they would start at T-2, so I don't know how far down they would fuse--our conversations never got that far as we are just at the beginning stages with her.

What about the gadgets like grabbers and bathroom hygiene?m I guess I'm really concerned about her developing a UTI or something like that once she's home--she's the one who can't tolerate too many antibiotics. So I'm concerned about her cleanliness, if you know what I mean.

[Carmell]

Me again...

Now that I've had my senior moment for the day (SHE not he) I have more to say (then I'll shut up).

IMHO, having a personal hygiene bottle will help a lot. http://www.safahouse.com/pd_personal_bottle.cfm Since she's already at a higher risk of UTI, this may help. At our house, we use flushable baby wipes post-surgery. Slightly easier to use, and you can stay cleaner. Not sure any "gadgets" will be necessary in the bathroom. I had bilateral (means BOTH!) carpal tunnel surgery this summer. I was worried about the bathroom. No worries. I didn't need any help, ever. The first two days were okay because of the surgical numbing, then after that, my fingers were used to movement so no problem.

Braydon has never used a grabber. Depending on how extensive the fusion is, or if she's having anterior surgery, or a thoracoplasty, she may want one, she may not. Once she's recovered enough to lift her arms above her head, she should be fine without a grabber (lifting in various directions). Lifting her arms is a good exercise a few weeks post-op.

When is her surgery?

[laurieg6]

My son was fused to L3 and needed no help from me in the bathroom, ever. He is relatively short - only now is about 5' tall and he could always sit just fine on the toilet and do his business. We kept a little kids chair in the bathtub during his showers for the first couple of weeks and I stayed in the bathroom during much of his first few weeks of showering post-op. This was because I was worried about dizziness and his overall weakness at that time.

We had a lot of pillows surrounding him to prop him up and cushion his back in bed, on the couch, in the car, at the dinner table, in movie theatres, etc. He brought a pillow to school for the first couple of months too. Especially wherever there were hard-backed seats, he needed extra cushioning for a while.

The only other thing I bought was a baby monitor so I could hear him while he was in bed, in case he needed me and couldn't easily get up. I only used the monitor for a few weeks and then he made me get rid of it.

I don't think that most kids need all the "gadgets" that many of the adults write about using. The kids usually bounce back amazingly quickly and adjust to their post-surgical bodies with relative, but careful, ease.

I also found that giving acidophilus/bifidus capsules and pushing lots of fluids really helped with the whole constipation/digestion problems. I gave a liquid iron supplement called Floradix which is non-constipating, to help build up his blood iron levels. It's a syrup made of high-iron fruits and vegetables and it was recommended to me while I was pregnant. It's fairly tasty and totally safe and healthy.

Take care,

[Sherie]

For hygiene, just use some warm water and let her wash herself off if she can reach. I used an empty cylindrical canister that disposable cleaning cloths come in. That worked just fine. Even if she can't do it herself, she probably won't mind some help until she can, Sheena was so doped up that first week home, she doesn't remember much of anything.

Sheena was fused from T4 and she never had a problem reaching over her head. I know some do and some don't. I don't think a grabber will be necessary.

We did buy my daughter a new mattress, it's a soft memory foam. She didn't sleep through the night until 2-3 weeks post-op, it was like having a baby again.

[pmsmom]

Thanks again, ladies!

Carmell--thanks for the link. The baby wipes is a good idea. I will have to look for unscented. Do they even make those any more?
Ages ago, I remember them being scented. The surgeon is looking as early as next spring/summer (2009) for her surgery. Another dr. had done her x-rays and MRI, but we decided not to go with the original doctors (the first referred her to another doctor in the practice).

But I have been keeping up with most of the surgical posts and am amazed and feel so much admiration for those of you who have had this or whose children have undergone scoliosis surgery.

Laurie--thanks for the recommendations, too! I will look into the Floridix. That sounds great. I was concerned about the iron supplements as I know they tend to bind. And also, the pain meds do the same thing. Because of dd's constipation issues, she's been on probiotics like you've mentioned for years. (Also the fruit-eze has helped regulate her.)

Sherie--thanks for the suggestions about the warm water. It's nice to know that dd may not have to have all of the "gadgets" that I've seen recommended.

Marian