Preparing your child for surgery is also very important. Of course the surgeries we have our children/adult loved ones undergo will be somewhat traumatic whether they remember or not in the end. So, helping them prepare for what is to come is a must. I have heard of mothers putting bandages around one of your child’s favorite stuffed animals to help explain what the surgery will be like and how the bandages come off in the end and they are all better. Although you may be excited and happy for your child’s surgery your child may react differently for a short term (anywhere from 1 to 5 days). Some of our children may cry, be very upset and even become a bit depressed wishing that they had their old ear back only because they see themselves in bandages and are scared or worried. Our children sometimes don’t have the concept of understanding what to expect directly following the surgery over time like we do as adults. They may think their new ear is supposed to look great immediately and not expecting the bandages to be worn for so long. Your child may act out, regret their new ear immediately following surgery or become depressed for two main reasons:
1. Heavy Medication: Please remember that your child will be heavily medicated just coming out of surgery post op. This may have an affect on your child (as each child responds to medication differently) and he/she may not be themselves for a few days to sometimes even a week following surgery. The medication may make them feel a little irritable and they may experience some depression. There will be some itching and some pain and they may be a little frightened about the bandages on their head too. Most children are fine, maybe a little tired and not quite themselves, but some children may act out and be very upset about their ear surgery. I have been told that some children have said that they wished they didn’t change their little ear only because they are not themselves following surgery and are only focused on seeing the bandages around their head. After a few days go by and especially following your child’s first post op appointment when they see their new ear, they begin to feel much better about it. So, don’t be surprised if your child is sad at first about their new ear when you expected them to be happy and excited…this will pass and they will be much happier when they are feeling back to themselves. Especially, as they see their new ear begin to look better and better. Soon you’ll catch your child looking in the mirror at their two beautiful ears smiling and primping 🙂
2. Understanding Surgery (directly following post op): Help your child understand that their new ear will heal slowly but look beautiful in the end and that they will have to go through surgery for this to happen. You can practice on one of your child’s favorite stuffed animals with bandages wrapped around the head and then remove them after the stuffed animal has gone through surgery and is all better. Or maybe write a little book or tell them a bedtime story weeks prior to the surgery explaining how they will have bandages for a short time and then they will be removed and how some itching and pain might be involved but it won’t be so bad…just like their favorite stuffed animal experienced and was OK after surgery.
– Thanks, Melissa Tumblin
Wet to Dry Cleaning Information
Following surgery, whether it be Medpor or Rib Graft, you may worry about the cleaning you have been instructed to do in order to keep your child’s ear clean and prevent infection. The below link can be of help when doing a wet to dry cleaning on your child’s scalp where the protective cup is attached and covering. Always follow the advice of your surgeon and contact your surgeon directly with any questions or concerns. This helpful link was submitted by one of our group’s members, Angela Sabal. Angela’s daughter, Sarah, had Medpor surgery. Thank you Angela!
Dry Shampoo
After the ear cup comes off and there are times we need to wash her off and at the same time avoiding water contact, we use wash cloth to soap and clean her body and for her head area and hair, we use dry shampoo which you may purchase at Sally’s or Target store and they call it “No Rinse Shampoo”. At Target store, you may have to go to the pharmacy and ask them at the counter since it is not over the counter. It should be around $5-$10 (I forgot the exact price). You may put some on the patient’s head and just clean/dry it off by a towel and it should remove all the oil and dirt off. This helpful information was submitted by one of our support group members, Sarinah Tran, her daughter Emma had canalplasty and Medpor surgery…
Helpful Tips When Planning For Surgery and Following Surgery:
Below are some helpful tips that have been shared by children, adults and parents from our support group who have already taken their journey through surgery (Rib Graft, Medpor, or Soft Tissue):
Submitted by Simone Cheadle, daughter Chelsea had canalplasty and Medpor surgery…
- Bring button up or zip up shirts so you don’t have to pull them over the head and knock the bandages or touch the ear too much.
- Button up shirts and pajamas make life a lot easier.
- Bendy straws (for weeks following surgery, not right after).
- A large hat or the skull caps that the surgeons either provide or ask you to purchase (prior to surgery).
- A small backpack for if you go out (mainly for when drains are used, they often are not used now).
- DVD’s, laptop or DVD player.
- A GPS system, either one in your rental car or one you can purchase, such as a Tom Tom or Garmin.
- Buy and freeze ice blocks and you can make jello the night before…both good for post surgery.
- Baby wipes.
- Bring medications (such as Tylenol and Tylenol with codeine).
- Bring something to do while child is in surgery.
- Bring some snacks to take with you for the waiting room.
- Bring a stroller for younger children (younger children get tired after surgery).
- Bring little gifts and treats that you can use as bribes when needed.
Submitted by Jamie Guerrette, daughter Bobbi had Medpor surgery…
- I would also get Benadryl, we went through a lot of it. As she was healing she was very itchy!! It was a must!
- Button up shirts- a must! I hadn’t thought beyond surgery thought. Button up or zip clothes for weeks after surgery, it is difficult to get clothes over their head with the cup on their ear.
Also a hoodie that zips up is so helpful! - GPS- a must.
- We also brought a stroller, even if you think your little one doesn’t use it now, they might want it then. they really do get tired easier. We didn’t take one on our second trip and ended up buying one out there. Airlines transport them for free, so why not bring it.
- Easy to digest foods- our little one was so hungry after surgery. Saltines, apple sauce, yogurt, etc., were a must. She was so hungry! We were able to get them ahead of time and keep in our hotel fridge. Good luck and don’t forget to stock up on “bribes” they came in very handy.
Submitted by Kim Givens, son Brennan had canalplasty and Medpor…
A couple things we thought would have been nice to know or do in advance before atresia repair surgery:
- No Straws for 2-3 weeks after surgery (they also said no sippy cups), so get your child used to drinking from a regular cup or water bottle ahead of time.
- Get your child used to sleeping on the non-atresia side a head of time.
- Start teaching your child to sneeze with their mouth open.
- With Dr. Roberson’s office, you can request to have the bandages taken off 24 hours later by a doctor at CEI instead of doing it yourself (highly recommended).
Submitted by Tiffany Wilke, son Manny had canalplasty and Medpor surgery…
- Don’t bring a pillow because CEI (canalplasty by Dr. Roberson) provides a special one at pre-op. We had packed a pillow pet, buckwheat pillow and stuffed animals. Way too much stuff for traveling! Don’t pack a sippy cup, you can’t use it after surgery, no straws.
- Before surgery purchase: 2 bottles of children’s Tylenol melt-a-way bottles – so you can always have them in your purse. When medicine wears off after 3.5 hours those first few days, you want it with you wherever you are. Plus, it is easy to bring with you on airplanes since non-liquid. Purchase individual apple sauces (get a spoon), bananas, crackers, Apple juice/7up or whatever your child may want for after surgery in advance as the hotel won’t have it. A new movie for post surgery if you have a portable DVD player.
- Make before surgery: Button down shirts – the only ones they sell for boys are starchy plaid shirts which are not comfy. We purchased $3 colored comfy Hanes t-shirts at Walmart, along with a pack of Hanes white t-shirts (for pj tops) and a friend made them adorable with Velcro closures down the front. For our next surgery, we will sew a large pocket in front and in back in our “surgery shirt”, with a Velcro closure, for the drain tubes. This will hide them and hold them. The hooded sweatshirt worked well when walking, but not great in the car, in bed, or when it’s warm. The drain tubes were a huge crabby distraction for Manny so I found myself walking behind him holding them most of the time (he didn’t like the pins, he didn’t want to feel the tubes pulling down). Speaking of drain tubes – I didn’t know what they were visually before surgery. I wish I would have seen a photo prior to surgery to mentally prepare myself! (ick)
- Park: There is a good kids park in Menlo Park behind the Stanford Mall a few
blocks. Walk: The Dish. Sports games: Stanford. - There is the Treehouse Social Club 1/2 block away from Dr Lewin’s office (Medpor) in Los Angeles/Cedars Sinai. It is a great place to go to play and have lunch either before or after wards ($9). It is geared for smaller kids, so it is rather “safe play” with a big tree house with small slide in the middle, and even art projects you can purchase to do there. We also took a children’s music class there from two dad’s who rock-n-rolled ($20). The food is great, with a super kids menu, and apparently celebrity mom’s go there. It was an excellent way to add something fun around the Dr visit and to play with other kids. Closed on Fridays.
- Bring your cell phone ear piece with you. You can’t talk on your cell phone while driving! (Not a law in WI!)”
Submitted by Casandra Xavier, adult who recently had Rib Graft surgery…
- I find the button down shirts to be easy too.
- Maybe shoes without laces like Vans so anyone can just slide their foot in without bending and causing painful head pressure (my experience).
Submitted by Bethan May Harvey, young lady who has had Rib Graft surgery and has been instrumental in helping other patients learn about Rib Graft along with her surgeon…
- I would also recommend buttoned tops or things with zips so that it does not have to be lifted over the head as this can cause discomfort.
- If you have had the rib graft surgery then definitely if its the first stage shoes that you can just slip on as you will have pain in your rib area.
- Also, I would recommend taking enough to keep you entertained through out the wait to go down for surgery and whilst staying in hospital.
- Wear any clothes that are comfortable to wear especially on the bottom half if you have had rib cartilage surgery as you don’t want anything that will rub or possibly have to wear a belt with.
- Also, I would say take a journal for the patient to write in daily so then they can look back on it in a few years time and remember everything that they were feeling or went through plus its something interesting to do whilst in the hospital this is something i wish i had done plus it can be a way of relieving some of the patients worries.
- Also, bringing things that the patient is familiar with can help them to feel settled in hospital so this could be things such as one of their favorite teddies or a game they like playing or something that reminds them of home.
- A camera is always something I take when I go into hospital as if their are things that the patient cannot see and wants to its a great way of showing them plus its another way that they can remember the surgery.
- Also, park the car as near to the entrance of the hospital as you can when you are discharged as the patient may not want to walk far or could be tired or in pain so having the car nearer just makes it a little bit easier for the patient.
- Also, definitely try and get your child sleeping on the other side if they usually sleep on their ear as they will not be able to do this after surgery so make sure if they do they are aware they wont be able to for a while i remember i used to lay on mine as i liked knowing my good ear was able to hear anything that i needed to so found it odd when i was unable to sleep on it but i understood not to you could also pad out the bed with things so that your child or the patient is unable to roll over onto the ear in the night as this is something that can happen whether they sleep on that ear usually or not.
Submitted by Gabriela Hernandez, her son, Jacob, had Rib Graft surgery
Pre-Surgery: Takes lots of pictures of both ears. Even if your child has Microtia only on the left or right side. I took ton’s of pictures of his little ear, but did not of his “good” ear. I wish I had because I don’t think it will look the same after the skin graft.
– Do a Video interview of your child to capture his thoughts and feelings before the surgery. I regret not doing this. Jacob was so extremely brave that I would have loved to capture this.
During Surgery: Cedars-Sinai Surgical Center (on San Vicente, West Hollywood):
– There is a Starbucks and Coffee Bean within walking distance. About 1 block from the surgical center. This makes for a nice walk and a quick “breakfast”.
– Do go across the street to the mall/shopping center that Dr. Reinisch points out. You will need the fresh air, and as hard as it is to eat, you will need to have lunch. My personal advice is eat lunch later in the afternoon, since you may not be able to eat dinner until very late at night.
– EAT!!! You will need to be nourished to stay up with your little one!
Post Surgery: Bring two sets of clothes (and underwear) for leaving the surgical center. I did bring extra underwear, but did not bring an extra set of clothes. Jacob vomited after we finished dressing him, and we had nothing else for him to wear, so we had to get another hospital gown/top.
Post Surgery: Bring a plastic bag to store any soiled clothes.
Bowl (or two) for vomiting (just in case they vomit on the way home/hotel from the surgical center, and to keep handy at every moment). We were able to get two blue bag’s from the one of the nurses to keep with us. It’s the one they use there when the patients vomit.
– Ask for Anti-Nausea meds just in case the vomiting continues. No sense in letting them vomit when there are meds that can help. In Jacob’s case the vomiting was causing him additional pain to the skin graft area in his leg.
– Flexi Straws or okay to use, in our case we only had Medpor implant, and no Atresia repair, so I don’t know if that will make a difference
– Thermometer (in case they do end up running a fever)
– Scissors for removing the hospital ID bracelets (if you are staying at a hotel).
Submitted by Marie Lybrook, daughter Lesley had Rib Graft surgery…
1. Bring your own pillow to the hospital, I am an RN and I know how things are cleaned or not cleaned in hospitals.
2. Bring your own sheets, preferably a different color than white.
3. Don’t bring small children, there are so many germs in hospitals.
4. Always make sure someone stays with your child from your family so they are never alone.
5. Take a tour of the hospital with your child to get them use to the stay and so they know where they will be staying.
6. Bring fun games and some familiar items to make it feel like home.
Protective Ear Cup Bandage Hats
Submitted by Carol Savage, one of our support group members and her son JT had Medpor surgery…
When having Canalplasty or Medpor ear reconstructive surgery, you may be asked to purchase a special hat to help cover up and protect the newly reconstructed ear and bandages/ear cup. It is suggested to wear these hats most of the time to help prevent the bandages from getting wet. These hats are not water proof! Always take the advice of your surgeon when wearing these hats. In fact, only purchase the specific hat(s) that your surgeon suggests you purchase. There is a reason why these hats work bets. If you can not find the Nike Skull Cap you can also purchase the Under Armour Skull Cap. Information on these skull caps are below:
The Under Armour Skull Cap costs $14.99 and is one size. This item can be purchased either:
1. ON-LINE/Under Armour Skull Cap: $14.99/one size at the following link:
http://www.underarmour.com/shop/us/en/mens/sports/football/accessories/headwear/skull-caps/pid8000071-Skull-Cap/8000071-100
Running cap for wearing over bandages following surgery
2. BIG 5 SPORTING GOODS
6601 WILSHIRE BLVD.
LOS ANGELES, CA 90048
Ph: 323.651.2909
3. Sports Athority Stores http://www.sportsauthority.com
4. Dicks Sporting Goods Stores http://www.dickssportinggoods.com
5. Or any other location that sells sports accessories/Under Armour products.
6. Here is the information for the Nike skull cap 🙂
The Nike hats cost around $18.00 (USD). These hats are for after canalplasty and ear reconstructive surgery. If you have trouble finding the hats at Nike.com go to this website or look for the hats on on-line through Amazon, etc…
The Nike Skull Caps have been hard to get lately. They are available at FootLocker Stores. It is a stretchy fabric and you can find a picture of it at http://www.footlocker.com
or
http://www.nextag.com/nike-skull-cap/products-html
or
http://www.google.com/#q=nike+skull+cap&hl=en&prmd=ivns&source=univ&tbm=shop&tbo=u&ei=YtjbTaiXJ8ng0QGNsaS5Dw&sa=X&oi=product_result_group&ct=image&resnum=1&sqi=2&ved=0CEQQzAMwAA&fp=c0c1da2a43bff41f
Thank you Carol for telling me about the Under Armour option through Dr. Reinisch’s office.
Another company called Lululemon for Yoga wear also offers stretch caps. Some are like the Nike and UnderArmour hats and others are longer and stretchier called “toque caps.” If you can not find the hats at http://shop.lululemon.com then check eBay and other areas on line. Another website I found with lots of selection is: http://www.google.com/#q=Lululemon+hats&hl=en&prmd=ivns&source=univ&tbm=shop&tbo=u&sa=X&ei=UATcTcjjJ8Hf0QGthMnYDw&ved=0CF8QrQQ&fp=c0c1da2a43bff41f. These hats range in price anywhere from $7.00 USD to about $20.00 (USD).
The Romo-Guard was designed byDr. Thomas Romo specifically for reconstruction surgeries. It provides increased clearance above the ear so as to reduce the risks of bandage slippage. Due to the guard’s secure fit to the head, there is a reduced risk of pressure on the bandaged wound, and the chance of infection is greatly reduced. A poorly designed or improperly used ear protector can cause skin injury or skin irritation. Dr. Romo’s modern design has a thicker, softer foam padding making it superior to the thirty-year-old design of the Glasscock™ ear dressing. Dr. Romo’s design matches the shape of an ear in that the back edge is higher where the back of the ear is further from the head. Because of this it conforms to the head securely and increases the patient’s comfort. Because of this design, the Romo-Guard™ prevents the dressing from resting on the healing ear. This protects against the possibility of necrosis—the death of tissue caused by loss of blood supply. The Romo-Guard™ Ear Protector and Ear Dressing can be purchased through Dr. Romo’s website at http://www.earreconstruction.com/postop.html. You may also order this product by phone: 800-844-3059 or by fax: 951-304-7562.
Another option to the skull cap is a doorag night wrap and tie can be purchased at any Sally Beauty Supply store. The night wraps keeps moisture out and costs anywhere from $1.86 to $3.29 (USD). The wrap can be found at http://www.sallybeauty.com/Satin-Nites-Wrap/SBS-480774,default,pd.html?cm_vc=SEARCH Thank you to our memeber Laura Wicks for telling us about this product! It is product #774.
