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Today marks 2 years that Faith has had her stoma. It seems so long ago that the doctor told us that she would need one. We have learned so much from those early stoma days. I can still feel the lump in my stomach when we were told that Faith would need to wear an ostomy. My husband was terrified. He had heard of an ostomy, but never seen one or dealt with one. And Faith was so little. She was only 2 ½ months old. While we both were strong outwardly, each of us had a moment in the hospital shower crying over the unknown.
What is a stoma and how is that different from an ostomy you ask? Well, an ostomy is the surgical opening in the body to release waste. There are several different types of ostomies. There is a colostomy, which is an opening in the colon. There is an ileostomy, which is in the small intestines. This is what Faith has. And there is the urostomy, which deals with the removal of urine from the body.
Prior to her stoma surgery, Faith had a biopsy done to find out exactly where the transition zone was in her intestines. The transition zone is the point where the part of her intestine that had ganglion cells met the part that didn’t. Her surgeon realized that her lack of ganglion cells spread all the way into her small intestines. The surgeon’s original plan was to perform the biopsy and create her stoma in one surgery. However, after he realized how severe her Hirschsprung’s was, he decided to wait for the official biopsy results before he created her stoma. A couple of days later, Faith was rushed into emergency surgery due to a perforated bowel and her stoma was placed.
Faith got her stoma on a Saturday. Her bowels were awake and moving that evening. By Monday, she was able to take her bottle. After a few days of observation, we were released from the hospital to care for her all on our own. Getting used to caring for an ostomy is hard. There is definitely a learning curve. In those early days, we were changing it multiple times per day. It would need to be changed because it would leak and poop would go everywhere. Faith has an ileostomy. Since Faith does not have a colon, her ostomy was placed in her small intestines or ileus. Hence the name ileostomy. The output of an ileostomy is more liquidy and acidic than an colostomy. This is because there isn’t time for the nutrients and water to be absorbed out of the waste before it is expelled from the body. The problem with multiple bag changes is that the skin around it tends to break down and become very raw. Anyway, we finally got the hang of changing her bag. Eventually we went from changing it multiple times per day to just one every 3 days or so.
From the very beginning, when we heard of Faith’s diagnosis I made a promise to her that she would have the opportunity to do anything and everything she wants to. I was and still am determined to not let her Hirschsprung’s or ostomy be a barrier for her. It was actually a quite comical conversation between my husband and I. He agreed. We were not going to let this stop her. He said she could do anything she wanted, except climb trees. Climb trees?? Why can’t she climb trees? I wanted to know. It was a huge conversation. To the point we brought it up to her medical team. I am chuckling to myself as I am reminiscing about this because I have no idea why this was such a big deal at the time. But it was, even to the point that we bought it up in a discussion with her medical team. I am sure they probably thought we were nuts. And you know what? As big of a deal it was at the time, neither my husband nor I can remember why?
We have been very blessed because we have only had minor issues with faith’s stoma or ostomy. The main problem we have had is that it will prolapse every now and then. A prolapse is when the stoma kind of pops way out. Faith’s stoma normally sits out less than ¼ inch. But when it prolapses, it can stick out almost 2 inches. When it first happened it was terrifying. I was home alone while my husband was away at training. Read the post, Gross and Mesmerizing, where I talk about prolapses. Depending on what is going on a prolapse can be serious and require surgery. Fortunately, Faith’s have always been mild in comparison.
But just because most our issues have be minor, doesn’t mean that we don’t have issues. Before her diagnosis Faith was evaluated by early intervention and had several areas identified where she was not meeting her milestones. However, after she returned home from the hospital she rapidly began to catch up. It was obvious that her delays were related to not feeling well. Yet Faith continued to lag behind in some gross motor skills. Traditional tummy time for her was pretty much nonexistent. She absolutely hated being on her tummy. Because she spent such little time on the floor on her tummy, it seemed like she would never crawl. Honestly, Faith crawled a little bit. But not for much. She had her own unique way of getting around at that age. Yet, even with the slow start, Faith quickly caught up to her peers and began walking shortly after her first birthday.
Crawling and walking added a whole new dimension to keeping the ostomy bag on. As she became more mobile, we had to change her bag more often. It just makes sense. She is not just sitting there anymore. But crawling and walking did not affect her nearly as much as when she became fully became aware of her ostomy. Faith is extremely smart and has been assisting in her ostomy care since before she was 1. I recall one time around that age My husband and I were determined to have her sleep in her own room and in her own crib. (Yes, we still co-sleep). We put her in there and of course, she screamed bloody murder. But we did a good job of ignoring her –at first. It was killing both of us, but we were determined to stick to our guns. Then, her cry changed. It got more… desperate sounding. Finally, my husband couldn’t take in any longer, so he got up to check her out. She was standing in her crib, with her bag pulled half way off and poop everywhere. Of course, when my husband picked her up, she immediately stopped crying and snuggled sweetly in his arms. But, we had been manipulated by a 1 year old. And yes, she is lying next to me fast asleep, in our bed, while I am typing this. So, Faith: 1, Mommy and Daddy: 0.
Most days living with an ostomy have become routine. Just like you going to the bathroom doesn’t consume your every thought of every day, neither does Faith’s ostomy. Then there are times, like right now, where it causes extra stress. Faith’s ostomy bag is a two –piece system. There is a bag, and then a wafer that attaches the bag to her skin. The bags come 10 in a box, and the wafers come 5 in a box. Side note here: I really don’t like the guy that came up with that marketing strategy! Why not make them the same count? It’s just like the 8 hot dogs you get to go in the 6 buns in the pack, really? Anyway, A box of 5 wafers usually last us around 2 weeks. So, last Monday, I noticed we were down to our last box of 5. I called her ostomy supply store and placed her order. We usually don’t have any problems and receive her supplies in 2-3 days. So when I hadn’t received her supplies by Friday, I checked her account online. The account showed some actions were needed on the account. I called the company, after waddling through the red tape, the client representative told me that we were clear and the items would be ordered. I wasn’t overly worried. I figured that we would have the wafers by Wednesday at the latest, and we still had 4 wafers left. Then the weekend came. Friday night, Faith had a leak. We gave her a bath and changed her wafer and bag. Now we are down to 3. I didn’t want to change it Friday night because, I knew she had gymnastics class on Saturday, and sometimes when she is very active she will need a bag and wafer change. But we had to change it due to the leak.
Now it is Saturday morning. Time to get up for gymnastics class. I don’t know what this girl did overnight, but she had a leak. So we hurried to get her cleaned up because heaven forbid we are late for gymnastics. We are down to 2 wafers. After gymnastics, we went to the park to watch a softball tournament. My husband noticed Faith scratching her stoma, so he asked her, “Faith, do you have a leak?” The answer, yes. As an ostomy parent you must always be prepared for an incident like this to happen. We keep enough supplies for two ostomy changes in our to go bag. So, we are down one emergency wafer and bag but we still have 2 at home.
Then around 3 am Sunday morning… Faith woke the whole house up crying in pain. When she finally calmed down enough to tell us what was wrong, we learned she had another leak. And it was a bad one. Poop was all over the bed and covers, and her. It was thin and watery. Although it is October, it is still very warm. With HD kids, you have to make sure they stay hydrated. Since Faith was outside in the heat for the majority of they day it was important that she drank a lot of liquid. As a result, extra runny poop.
So, in the tub she goes at 3am. And of course, this means yet another bag change. We are down to a total of 2 wafers.
We are panicking. Never before have we been this low on wafers. The mix-up with the medical supply company coupled with Faith’s excessive number of leaks this week has put us in a position. First thing Monday morning I contacted the supply company to make sure her supplies were sent out. They were not. The hold on the account was not fully cleared up as the previous rep told us. This new rep assured me that she has released the order and we should receive it in 1-2 business days. I am praying we do. I am also praying the leaks slow down so that the supplies we have will last 1-2 days. We are an hour away from a small children’s hospital. Our back up plan is to contact them to see if we can get an ostomy bag and wafer from them because it is an emergency. I am not sure how willing they will be to help us as Faith is not a patient of theirs. We live 3 hours from Faith’s hospital. I know that her ostomy nurse would give us some samples to hold us over, but by the time they reached us by mail, our supply should be in. It is never a dull moment around here.
But all in all, we are so thankful, and we are celebrating Faith’s Stomaversary today. Without it, she would not be here with us.