I meant to make this post while Baby J still had his stoma. I was going to make a whole video and it was going to be awesome. But I'm not that good, so it didn't get done. April came around faster than I thought it would and I didn't have hands to help me make the video (Lawrence was working crazy hours earlier this year). So I'll make the post now and include lots of pictures.
When a person has as stoma they have to wear an ostomy pouch to collect the output from their stoma. There are many different types of stomas and they can be just about anywhere on a person's belly. Baby J's stoma was called a double barrel loop stoma because both the functioning stoma and the mucus fistula (the non-working part) were in the same place, attached on one side and looped together. This was easier to take care of than some other types of stomas because the two pieces were together. Some people have two separate stomas, the working one and a mucus fistula, that are sometimes close together and sometimes not-- occasionally these require two ostomy bags. But I'm not here to talk about stomas etc. just to talk about Baby J's stoma and how we took care of it.
Before we left the hospital the nurses showed us how to take care of the stoma, there was also a video we had to watch. Then the nurses placed an order for ostomy supplies with a medical supply company for us. I wish I had asked more questions about what they were ordering and why because when our first order came it had supplies in it that I didn't know how/want to use and I was confused about how much of everything we had received. I wish I had taken more time to talk to the nurse, asked her what she was ordering, how much, and why she was ordering the things she was. This would have saved us some money and some confusion in the first few days home with Baby J.
The first few days (maybe even week) after we brought Baby J home from the hospital we were going through a lot of ostomy pouches, like 2 or three a day. It seemed like nothing we did worked to keep them from leaking. The hospital sent us home with a whole box of pouches and supplies to get us through until our order of supplies was delivered. It turned out that the pouches we were using were too small for our chunker baby. I went to the internet for some help and reached out to other parents of children with HD. They were super nice and gave lots of suggestions to try. We tried some of their suggestions and finally found a combination of tricks that worked well for us.
Here is a step by step of what we did to keep pouches on Baby J and the products we used that worked well for us:
Prep:
You may need to restrain the child: the easiest way to do this is to have another adult to help hold down arms and legs, but you can also use a blanket or two to swaddle arms and legs. You do this by getting a larger blanket (or two small blankets) and laying the child on them as if you are going to swaddle them with a corner on each side, then pin one arm next to the child's side, wrap blanket over it, then tuck the blanket corner under the child, do the same on the other side.Cut a hole in the wafer that will fit around the stoma. We were lucky in that Baby J's stoma didn't change size much so I made a template from an old wafer's paper backing that I was able to use over and over. Then warm the wafer so the adhesive will form to the skin well-- if you are using a one piece system be careful that your heat source isn't too hot or it will melt the bag, this isn't a problem for two piece systems-- I put the one piece system in my bra or sat on it to warm it.
1. Remove the old bag and wafer, if you use a one piece system they come off together, sometimes on a two piece system the bag and wafer will come off separately. Unfortunately this often makes kids/babies cry because it's like pulling off a big bandage.
2. Clean the area around the stoma with a gentle, lotion and scent free soap, water, and a lint free cloth. We used Johnson and Johnson's baby wash. You have to scrub a little to make sure things get really clean and be sure to rinse well and then get it thoroughly dry. This was easiest for me to do in a bath.
3. Spread stoma powder on the area that will be covered by the wafer/bag. The stoma powder will collect on any remaining adhesive residue, this will appear slightly raised and the stoma powder won't easily blow away. Rub these areas vigorously with your finger (I wore gloves for this part) to get all the residue off his skin. This ensures a good seal between the new wafer and the skin. Rinse with clean water and dry.
4. Warm the skin by placing a warm pack or hand over the stoma and surrounding skin or using a blow dryer. This makes the adhesive on the wafer mold to the skin better.
5. Apply cavilon skin protectant to the area that will be covered by the wafer, I used the wipes, but there is also a spray available. Do this in at least 3 layers as this will cause "crusting" and make the wafer stick well-- allow each layer time to dry before applying the next.
 |
| enjoying the warm pack |
6. Apply stoma paste around the base of the stoma like a caulk. We used a syringe to make sure the paste went on in a thin ribbon and was easy to manage. Also put paste around the hole on the wafer that will go around the stoma, after peeling off the paper backing.7. Place the wafer and/or bag over the stoma making sure there are no wrinkles in the wafer. I used a q-tip around the stoma to press the wafer down and make sure I got a good seal. Then warm the bag/skin and put gently pressure on the wafer to ensure a good stick.
This system kept bags on for up to three days for us.The only other trick to keeping bags on, that we found, is emptying it often. I emptied it at every diaper change-- more often if it filled with gas between.
My list of stoma care essentials:
Hollister one piece bag and wafer system
Stoma powder
Stoma paste
Syringe
Nitrile gloves
Johnson's baby wash
Lint free gauze
Blow dryer
Wash cloth
Water
Cavilon wipes
Q-tips
Scissors
Marker (to trace the template onto the new wafer)
Changing table
Blankets
Another adult
No comments:
Post a Comment