Disclaimer: I am not a doctor or nurse and this is NOT medical advice. I am a mom with a son (6) in a Petrie cast for 6 weeks.
As I was preparing for the surgery and casts, I really didn’t know what to expect. Thankfully the support group on Facebook got me started but there were so many little things that we have had to battle through. My son’s doctor/nurse team was fantastic but they have never gone through this day in and day out so I decided to write up this document for anyone to reference when going through something similar. I am hoping this helps any parent or caregiver prepare and feel equipped to go through this journey! Once again, please talk to your doctor or nurse before trying medications or treatments for your child. This is merely suggestions and what worked for us. Thank you and good luck to you! You will get through this!!!
Things you will need:
Potty chair or bed pan (depending on size of your child)
Depends with velcro sides – found here or some Walmart stores carry them
Medications (depending on what your doctor suggests)
Rental wheelchair (be sure the arm rests are removable)
Moleskin roll – found here
Cast scratcher – found here
Cast itch spray – found here
Snaps (unless buying a kit)
Sew on snaps are found here or Walmart or sewing stores
Lap tray similar to this one here
If child still needs a booster seat – this one works great!
Glad Press N’ Seal wrap (or saran wrap)
Fun water bottle
White board or something similar for a countdown!
Mobility – Have your child sit in the wheelchair and practice rolling around a bit. Be sure the seatbelt is fitted correctly and your child fits. We rented a reclining wheelchair but have found he doesn’t like to be reclined. We had to take the armrests off to have him fit. Have your child try out some different things. Practice putting the leg supports on the wheelchair. If you plan on taking your child places, be sure the wheelchair fits in your car and you can get it in/out easily (they can be heavy).
Depending on the height of your child, you may need to figure out if they will fit through some doorways. My son is 6 (pretty short) and his span is 28 inches wide. Luckily he fits through doorways but some older or taller children it may be challenging.
If your child needs a booster seat, you will need one without arms (see above in Optional List). Depending on your car, your child may or may not fit. Talk to your doctor about the width before surgery so you can adjust as needed. My son fit in the back seat – slightly turned – with passenger seat moved forward. They do sell different harnesses and things if you have an older child that won’t fit in a backseat.
Talk to your doctor about medication options (after surgery) so you can have what you need at home and ready to go. My son started on tylenol and ibruprofen (alternating) and benedryl at night (to help with itching). We decided to also start him on a melatonin regimen to help him sleep (because benedryl doesn’t make my son sleepy). Be sure to ask your doctor before trying any medications.
The Depends were very helpful (especially at the beginning). My son was still very out of it the first day and a half after surgery and had small accidents. Luckily the depends worked (for the most part -they are a bit too big so not perfect) and helped us to not worry so much about getting to bathroom in time.
We bought underwear that is one size larger than he usually wears (important that they be larger to accommodate for snaps. Using a snap setter we cut the underwear at the seams (boy underwear – girl underwear could probably be sides) and put three snaps on each side (6 total). They work great.
You can do the exact same things with shorts. Velcro can also work but we found that snaps work better (more secure- don’t open when moving around). Once again, buy shorts that are at least one size bigger than they normally wear. Cut up the sides and add snaps. We used a large sew-on snap for the top waistband (where the elastic is – too thick for the snap setter) and the large ones worked great. Then smaller snaps down the outside of the legs. Depending on your child’s leg length, will depend on how far apart to separate the snaps. Too far apart? Gaping. Too close together? More work and sometimes unnecessary. The snap setter isn’t too difficult to work; my dad who has zero sewing experience became the snap master. Ask someone who is handy and can follow directions to help you with the snaps.
Depending on your casts, you may need larger socks as well. My son’s feet are completely casted (only toes poking out) so we bought socks in a large size to put over the feet/casts. Some children have their feet completely free so regular socks will work.
It worked best for our child to sleep on a futon mattress (full size) on the ground in our family room. We put a twin mattress next to it for one of us to sleep nearby (crucial the first week or so). The futon mattress is low enough so my son can army crawl on and off; he can roll over and move around and still stay on the mattress. Other people swear by bean bag chairs and recliners. It may take a few tries to find what works best for your child. The first few nights are the hardest. I promise it gets easier. When your child figures out how to move a little, roll over, etc. nights become manageable. The first four nights were the worst; crying out in pain, couldn’t get comfortable, we all didn’t sleep more than 30-45 minutes at a time. It is much like having a newborn. As soon as you get a system in place and your child is confident in ability to move around a little, sleeping is much more routine. I spent some nights pacing, crying, and overly stressed due to lack of sleep and worry. Hang in there. My son definitely sleeps the best on his tummy with his feet hanging off the end of the futon. He also sleeps sometimes with his legs propped up on pillows with heels hanging off. Some parents suggested sleeping on their tummy with pillows under the thighs. It may take awhile but I promise you will eventually get sleep. 🙂
If at all possible, keep your house as cool as you can. Cooler temps help with swelling and itching. We were a chilly 66 degrees. A box fan works great at night; a hair dryer on the cold setting can help with hot/swollen toes (just be SURE it is on cool).
Pillows, pillows, and more pillows. You can use them to prop up legs, feet, sit up, etc. You can never have too many it seems.
Moleskin – The cast may develop some sharp or rough areas (especially if your child pulls at the stuffing like mine). The adhesive moleskin in the supply list is fantastic. Cut strips and slap on the cast (folding a little over the edge against the skin). My best tip for making it last more than a few hours? I layered strips on and then added an extra strip across to hold it down. This made the moleskin last for a few days! Gross and dirty but it stayed on! Moleskin also helps keep the cast clean. Here is a picture of what it looks like on my son’s cast:
Baby wipes are the best thing ever! Get a few packages as you will go through them. You can even buy disinfecting ones for hands/faces. This was our daily wipe down routine.
When it gets to the point that you just can’t stand it, you can do a more thorough bath. Glad Press N Seal (or saran wrap) works great around the casts. I wrapped the upper parts of his casts with the wrap; this keeps it dry in case of drips or splashes. We then filled a large pot with warm water and baby soap and would do a more thorough wash down with wash cloths. If your child can stand (feet not casted), you may be able to have them stand in a tub (with casts wrapped of course) or even near a sink. We just my son lie down on towels on the kitchen floor and did the “bath” that way.
For my kiddo, his hands were by far the worst since he couldn’t regularly wash them (couldn’t reach a sink – even in wheelchair). We filled a giant pot with warm water and soap – put his matchbox cars in the pot – and played “car wash” for a few minutes. This helped keep his hands and nails clean.
I only have boys so this is really advice for boy moms/dads/caregivers but some issues will apply to both. 🙂
Constipation – For many people, anesthesia and pain medications cause constipation. This was definitely an issue for my kid. We bought Miralax and mixed it with water. It truly is tasteless – we just did half dose to help move things along and help it be a bit softer. It took him a few days to be successful with a bowel movement, but the Miralax helped tremendously. We used it for the first full week until he was back to normal.
Potty chair – My child is small enough that we bought a toddler potty chair (you may need to use a bed pan depending on the size of your child). It takes some getting use to – lifting on and off the potty chair – but it worked great. We used a urinal – it takes some practice – but it also worked great. As long as your child is sitting up fully (in bed or on wheelchair), the urinal will work. Or they can sit on the potty chair and hold the urinal. I suggest lots of washcloths handy for the first few days. We put one under him and held one around the urinal to catch drips and/or leaks.
It was Halloween when my kid had his casts. Thanks to Pinterest we created this in just a few hours with cardboard, poster board, spray paint, duct tape and a few zip ties. Cheap and honestly fairly easy to make.
We bought a cool water bottle before surgery for him to use at home. This helps because you can track to be sure they are getting enough fluids (especially important those first few days). My son was really thirsty the first few days (I am assuming from medications) and having the water bottle handy helped.
Getting a 6 year old to agree to take medications, try to go to the bathroom, etc. required a ton of bribery. We bought little “treats” as rewards. This helped us all survive the first week. We bought small things like matchbox cars, mash-ems, blind bags, etc. and had a treat jar. If you have friends or family that would like to help maybe ask them to add to the treat jar. We also used these prizes for going to the doctor, completing school work, etc. for the first couple of weeks.
After three days of taking chewable medications, my son had enough. We couldn’t bribe him to even take them. He was still complaining of pain so we wanted to offer medications but he didn’t want to take them. We found a solution that worked for us (but I may have a large dental bill later); we put his chewable meltaway medication in a mini scoop of ice cream. It totally worked! Every night (or when complaining of pain) we would put the correct dose in a small bite of ice cream and no more complaints.
Moving around – After a few days of getting used to the casts, my son was able to start moving about some. The doctor warned to not let him try to walk so he didn’t break the bar or the casts – I was shocked thinking that some kids may even try to walk. But… after a couple days my son was definitely able to move around and this helped with sleeping so much! Don’t be surprised when your child figures out how to roll over, army crawl, boost themselves up, etc.
What to watch for:
Incision – If your child has an incision (my son had a small one in groin), be sure it is healing properly. The first few days your child may be tender or sore. My son had a pretty large bruise; his bandage came off 4 days after surgery without any issues. We had to be very gentle washing that area for the next couple of weeks. Check to make sure it is healing and not causing other issues.
Heel sores – Not very common but my son definitely developed them. A heel sore is like a bed sore that develops from friction and pressure. If your child complains of foot pain, ask them where and to describe it if they can. If at all possible, hang the feet/heels off the end of a pillow (or rolled up towel or edge of mattress/couch) so nothing is touching them. My son complained of foot pain from the beginning; I assumed it was just getting use to the cast. It got progressively worse and on day 16 of casts, we took him in. They cut a small rectangle in each foot to check the heel and he was developing sores. 🙁 One heel looked like it had a small blood blister; the other was just really red and inflamed. Luckily, we caught them early so they should heal quickly. If your child is complaining of pain (not uncomfortableness or itching), err on the side of caution and contact your doctor/nurse. As soon as the holes were cut in the heels of my son’s casts, his pain went away. Once the pain went away, he finally slept through the night.
Be prepared for some fear when the casts are removed. My son actually asked the nurse if he could have the casts for one more day simply because he was scared about having them removed. Take your wheelchair to the appointment because you will definitely need it.
Plan a bath, hot tub, and/or some therapy sessions. Remember that bending, stretching, crawling, working on range of motion is important. It can take a couple days before standing is even an option. We are Day 4 after casts and he is crawling but not walking. Our son did not walk for two weeks after the casts were removed. I was so worried but remember that it is okay to rest that hip so spending some extra time in the wheelchair is not a bad thing. We started with crawling and standing then moved to walking with the walker. He was definitely scared to walk! We are two months post-cast and he still uses the wheelchair at school and when we go places that require more than a short walk (the store, for example). Having that hip rest is ok! But, keep working on that range of motion.