A friend of mine lost her father a few years ago, and when I would ask her how she was doing she would say fine, as long as I don’t go there. I remember thinking, that was so sad, that she couldn’t even think about her dad. Fast forward a year, when I lost my dad, and suddenly I knew exactly what she meant. It really is just too painful to even let yourself think about. I am not someone who cries, in fact, I think as an adult my father saw me cry once, at his bedside. Now, at any moment of any day regardless of my mood, if I think about my dad, I have to fight back tears. I just don’t let myself go there. Some fancy shrink would call that avoidance, I call it survival.
So when I met with my girlfriends this past week to talk about the fundraisers they are doing for Faith they asked me to write a blog on exactly whats going on with Faith, what our days look like, what our future looks like. Letting someone do a fundraiser for you is hard enough, I am the fundraiser lady, that’s what I do, I volunteer, I help others. I’ve realized its very hard when your position goes from giver to receiver. That in its self is a loss for me, hard to deal with. My Aunt says, it’s just people showing their love for you and for the kids, but to me it feels like I have failed to do what I needed to do to take care of my family, regardless of the circumstances.
So accept help, from people, and then talk about the details I try so hard to let slip from my conscious mind. not so easy. I know exactly whats going on with Faith, I know the details, I know the risks, I know her prognosis. I also know that those details that seem factual don’t feel so factual at all. They feel like raw hurt, the kind that makes your throat hurt and your eyes fill with tears. It’s the I just can’t go there hurt.
Really, its simple. Faith’s colon does not work. Neither does her rectum. Because of that she has a hard time absorbing fluid and nutrients she needs to stay healthy. She has many diagnosis’…Hypoganglionosis of colon & rectum, Hirschprungs disease, failure to thrive, Dehydration, Urinary retention, chronic constipation, distal large bowel, colonic illis, mega colon, enterocolitis, there are others… She was given a looped colostomy in hopes that she would someday be able to gain weight, and have a surgery called a pull thru…we are far from that ever happening. The colostomy was supposed to solve her constipation problems…they always work, that’s what they told us…you will have output everyday…Faith’s doesnt work. Sometimes we see no output for days…in fact right now, we are on day three. Sometimes her colon stops working and she gets totally backed up, in theory that should never happen.
She gets fevers because when things get caught in her colon the enterocolitis flares and she gets sick, and feels horrible. When this is happening, she doesn’t eat and hardly sleeps. This is when I get the most worried. She seems to feel better when she is up and moving around. She takes lots of medicines….14 I think at last count, 3 antibiotics, motility agents, stool softeners, anti-nasuia, antacids, probiotics, and periactin, a drug that is given to patients suffering from anorexia, to make them want to eat, Faith loves it, it makes her silly. I, on the other hand, dislike it, she’s silly for the first hour, then she crashes and is an emotional mess…she takes it three times a day. Her med schedule is every two-three hours. She also gets free water, which is nothing more than water with probiotics and some other stuff, that goes thru her feeding tube to help with dehydration, I do this in the middle of the night, mostly, so she doesn’t have to be stuck to her feeding tube pole during the day.
The worst part of her day is her wash-outs. That’s where we take a red rubber tube and clean out the proximal and distal parts of her colon. We use a saline solution and huge syringes, 6 on each side 12 total. When her motility is good, she doesn’t complain too much, when it’s not, she screams and cries. I think it hurts and I think that its scares her because she never knows if its going to hurt. We are supposed to do this three times everyday. Our insurance and supplemental care covers materials for one wash-out a month, because there is no protocol for Faith disease because it is so rare. I know….it’s total BS.
Then there is her colostomy care, Faith has already had one colostomy revision because her stoma prolapsed. This stoma is also prolasping. The skin around it is almost always has a secondary infection and it always has an itchy yeast infection. That hurts her for sure. Its red and bloody, when you clean it even with just water it stings. And I have to do it, and hold her down as she tries to squirm away from me. It sucks. She needs a new bag, every couple of days, they go bad fast because of the wash outs and her infections.
We also have to clean around her Mic-key button (feeding tube) which isn’t usually a big deal, unless her belly is distended which is about half the time. When her belly is descended it is very sore to the touch and often sits funny on her belly. She says it feels bruised. Its gotten pulled out twice, forcefully, and its painful. But, shes five, and she has to play, and I love when she forgets about all the stuff on her belly and plays. I just pray all the time that it stays in place. Either way we have to check placement twice a week, and change it once every two months. We keep track of what she eats during the day so we can give her feeds thru her tube at night. When her motility is bad, the feeds make her sick and we can’t give them to her.
The MD’s at Michigan have been amazing. Dr. Newman is the best and Faith loves her so much. Michigan does not have the equipment to do the testing Faith needs to see what options there are or if there are any. There are a limited amount of hospitals that have this technology. Which is why we are headed to Boston. I was so excited to talk to the Doc that is going to take care of her, the first words out of his mouth were, this is a very rare and difficult case. Not what I was looking to hear, but they seem hopeful they will be able to do something to help her. I told him U of M wanted to send us to another children’s Hospital in December and he said, if you’re not still in Boston you should plan on going. The more eyes on this the better. Again, not what I wanted to hear.
I never thought anything would be as hard as the few days in the hospital after my dad had his stroke, before he died. But watching your child go thru this, seeing her in pain and not being able to do anything for her, is way worse. Not having any answers, not knowing where to go, or where to get her the help she needs. All of it, is heartbreaking.
There isn’t an uplifting ending to this, we don’t have our happy ending yet. I am scared, and I am tired, and I feel so alone in all of this. I feel like I never have good news, and I am usually filled with the same depressing story over and over again. I try to escape, I try to not go there….but this isn’t something I can hide from or run away from.
This past week, we went to a celebration at the new Mott hospital there was a seventeen year old girl, who happened to have digestive issues, who got up and talked about growing up at Mott hospital. How she spent holidays there, how she decorated her room, much like our last year at Mott. Every night since that night, I’ve been thinking about that girl, and wondering what I can do to make life enjoyable and fun in the midst of this chaos. I want Will and Faith to look back on their childhood and remember fun, happy times. I want them to remember that we stayed strong, and stayed together. I don’t have it figured out yet. Most of the time I’m not sure how I am going to get thru the day, looking at tomorrow can be way too overwhelming. If I am able to stay strong, and we do make it thru this, I’ll know in the end I can handle anything. I just pray that Will and Faith will feel the same way.
