Helpful Tips

Being the parent of a child with medical issues can be even more of a challenge that just following doctors' orders. Sometimes doctors don't think to tell you something, or have no idea of all the "tricks of the trade" for real life situations. Hopefully the tips included here will help give parents some ideas for problems that might come up. These tips have been collected from many parents, but should not be taken as medical advice. Consult your child's doctor for more information. If you have more useful tips to share, please use the "contact me" link at the top right of the page.

Blood Draws

Blood Draws can be very traumatic, both to child AND parent! Over the years parents learn little tricks to make the process go a bit more smoothly.

Use Emla on the area 45 minutes BEFORE blood is to be drawn. It's a prescription medication that your doctor can prescribe. This numbs the skin so that the poke isn't nearly as painful. Some kids even say they don't feel it at all.

Bring a distraction, like a special toy or book.

Catheters and Bags

PUVs often means some sort of surgery and many surgeries involve having a catheter (sometimes more than one) and the bags they are attached to. Dealing with a wiggly toddler who has three catheters hanging out of them is a real challenge.

Tape the catheters to the legs with ample catheter above the tape so they they can move freely, but do not pull on the catheter.

While inpatient you might have the freedom to take a walk down the hallway or around the hospital, use a pillow case to carry all the bags and tubing. This can be placed in the basket of a stroller, or held by the parent as the child is carried or walks.

If you are outpatient, I found that having the child wear overalls worked well. The catheter would go down the pant leg and then I would hang the bag to the back of the overalls. Of course this also meant I had to lower the bag to drain the tubing occasionally, but it helped the child to walk around fairly easily without pulling on the tubing or tripping over the bag.

Dialysis

Peritoneal Dialysis

When using a drain bag, instead of opening up the clip to drain the bag, we had a set of kitchen scissors set aside to cut open the bag and dumped it into the bathtub. Was so much faster!

Use lots of tape on the connection. Little fingers are good at getting it off. Put enough on there that you have enough time to get into the room before they get to the bottom layer!

A button hole in the blanket sleepers makes a great place to thread out the dialysis catheter.

Hemo Dialsysis

Diapering

Diapering can be an interesting challenge if your child has ostomies. Vesicostomies can usually be covered with a regular diaper maybe one size larger. Pyelostomies are higher up and on the sides/back, so they are harder to cover. For the smaller babies, just using a larger size diaper can work, but soon they will be too big for them too.

For pyelostomies, you can use a regular diaper wrapped around their back and then use a youth/adult diaper on the regular way to hold it on. You might need to tape up the leg holes a bit (another use for duct tape!)

Giving Medication

Most of our kids will need medication of one kind or another. Sometimes doctors and pharmacists don't think to mention that certain drugs should or shouldn't be given together. These are some tips from parents, but please be sure to check with your doctor or pharmacist in case your child's doctor has something else in mind.

Don't give iron or multivitamins before dialysis, it gets dialized out.

Don't give Bicitra and tums together. It turns into a whole new compound that isn't good. (calcium carbonate + Sodium citrate= calcium acetate)

Don't give Iron with "stomach meds"

Don't give prevacid with protein (give on empty stomach)

Don't give iron with calcium (they interfere with each others absorption)

Bicitra is best (by mouth) if mixed in chocolate syrup (the major sweet knocks out the major bitter flavor)

Growth hormone is best given in the evening/night because that is when the body normally releases it.

Give liquid meds with oral syringe instead of a spoon. Put syringe toward the back of the cheek, it makes it harder to spit out.

Hospital Stays

Hopefully hospital stays will be few and far between, but it helps to be prepared, especially if you live quite a distance from the hospital.

Often cellphones are not allowed to be used in hospital rooms. Bring a calling card to make long distance calls when needed.

Have change on hand for vending machines when the cafeteria is closed and you need bite of something.

Potty Training

Potty Training can be difficult no matter how healthy your child is. Some of our kids might never be able to control urine and some not even bowel, but the majority will finally get to the potty training stage.

A great thing to use is a doll that pees. Use it to demonstrate how to use the potty. Maybe only let them play with it while in the bathroom or sitting on the potty.

It can help to have the child use the bathroom at regular intervals, this can help a lot for children that don't always feel the sensation of needing to urinate, and it can help to keep the bladder as empty as possible, so there can be less reflux into the kidneys.

It helps to have a boy sit on the toilet and lean forward to help him empty the bladder. Often these children will need double or even triple void. Have them go, then wait a few seconds and try again, it can help to get rid of any residual urine left in the bladder.

Tube Feeding

Some of our kids will not eat what they need by mouth, so tube feeding will be something to deal with. Whether it's through a G-tube or NG-tube, there are some tricks we've found that might be useful.

When they have blanket sleepers, you can make a button hole in the PJs and run the tubing out of the hole, that way they can still stay warm. You can place the hole near the feet if you are worried about them getting tangled in the tubing.

Use LOTS of tape, kids seem to be able to find anyway to take connections apart! We don't want to feed the bed (although I'm sure a lot of us have anyway!)

Urine Samples

Taking urine samples from a child, especially one who is not potty trained, can be interesting to say the least. Sometimes the doctors will want to catheterize the child to get a good clean sample, but there are ways to take samples with a collection bag.

If the child is in a diaper, cut a slit in the diaper for the collection bag to hang trough. This keeps the collection bag from bunching up inside the diaper, and you can see when there is urine in it and can remove the bag before the urine can leak.