not going there

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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.

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10 thoughts on “not going there

  1. praying for you. thanks for the blog mary ann. it must be hard to even put into words. and about your dad…. yesterday a patient was telling me all about how much he helps his grown children out. with simple everyday things. i started getting tears in my eyes…..oh how many times i have needed my dad… and how many more times will i need him? he was murdered in 1979. Draw on the things you learned from your dad, it will help get you through. He is in your heart, He is in Will and Faith, He is all around you 🙂

  2. MaryAnn Lutz

    Mary Ann, I think about you often. If I can help with the fundraiser, let me know. My thoughts, prayers, and hugs to you.
    MaryAnn Lutz

  3. marihelen hemingway

    My dearest Mary Ann,
    I am moved beyond words. We have not spoken in over 10 years, however I myself have had tremendous obstacles, nothing like you but I want you to know your blog has helped me, to remind me of what to be grateful for. I think you are an amazing mother and person, yet you always were a wonderful person. Real, loving, giving and honest. I think of you daily, I have been reading the blog as you have added to it. I want you to know you inspire me, and have had a profound affect on me. My brother has terminal brain cancer and we had several fundraisers for him last year, I imagine you have it under control but if there is ANYTHING I can do please let me know. Thank you for the gift of your story.

  4. dxidoe

    Great job Mary Ann. You know I’m one of your biggest supporter. If people would like to help with Fundraisers they contact me. Face Book, Look for Funds for Faith. Or email me @ dxidoe1@bellsouth.net
    As your friends we are going to make this happen for you. Sending tons for love and prayers.
    oxox
    Pam

  5. Marie Benham

    Hi, I am Mike Reed’s cousin from Houston. Saw his wife, Kathy’s, share of your site about your sweet Faith. You might already know about this, but in case you didn’t, I wanted to share this write-up about a site for people with rare diseases or with loved ones with rare diseases. It’s a good resource. God bless you all!

    Bottom Line’s Daily Health News.
    December 5, 2011

    Priceless Support for People with Rare Diseases
    ——————————————————————————–

    If you can’t imagine anything worse than being stricken with a debilitating disease or watching helplessly as that happens to someone you love, think about this — wouldn’t it be all the more awful if the disease were so rare that you felt completely alone, with no one to talk to who knows what it’s like to live with that particular set of difficulties? That kind of isolation used to be nearly insurmountable, but now there’s no need to go through it, thanks to the Internet — as long as you know where to go online.

    RARE DISEASES ARE A COMMON PROBLEM

    You may be surprised to learn that there actually are around 30 million or so Americans who suffer from so-called rare diseases, which are defined as conditions that affect fewer than 200,000 Americans. There are about 7,000 diseases that fit this description. Some are far less rare than others, and not all are life-threatening, but in any case, who wants to feel as if he/she is a patient population of one?

    That’s why I want to let you know about an organization that provides specialized help online for people with rare diseases. Founded in 1983, the National Organization for Rare Disorders (NORD) is a nonprofit based in Danbury, Connecticut, that is dedicated to identifying, treating and curing rare disorders through education, advocacy and research.

    Though a rare disease, by definition, affects relatively few people, the truth is that people affected by rare diseases have quite a lot in common collectively, I learned from Mary Dunkle, vice president of communications for NORD. For example, any patient with a rare disease might want to use NORD to…

    Learn how to access “hard-to-get” medications, especially if you’re uninsured or underinsured.
    Meet other patients who suffer from the same disease and who can provide support and understanding that your loved ones and close friends may not always be able to provide. (Dunkle said that people often are so relieved and grateful when they finally connect with another person who “gets” them that they weep with joy!)

    Read inspiring stories of patients triumphing over their disease.

    Look at articles written by rare disease researchers. It’s important for individuals and families affected by rare diseases to learn as much as they can about their particular disease, including the latest research findings, so that they can be effective advocates for themselves, said Dunkle. With so many rare diseases, it’s impossible for family physicians to always have the most current information, she added.

    Find out the latest news about clinical trials that you might be able to participate in.
    Learn about natural therapies and alternative treatments that may help you cope.
    E-mail your questions about your disease to NORD’s in-house genetic counselor or registered nurse for free.

    Discover other sites and organizations that support patients who suffer from your particular disease. NORD has a large, free database of disease-specific patient organizations.
    Stand up for your rights. Patients and families can read about upcoming legislation that is of interest to them.

    Check out NORD’s site at http://www.RareDiseases.org to learn more about your illness and/or tap into the kind of informed and empathetic emotional support that could help you cope.

    Source(s):

    Mary Dunkle, vice president of communications, National Organization for Rare Disorders (NORD), Danbury, Connecticut. http://www.RareDiseases.org.

  6. Sorry for what ur going threw. It breaks my heart to know that a little baby is going threw so much. She is so strong n I admire her. This sat I will say a special prayer at my church St Anthony’s Catholic church. We r having a statute lady Fatima come to our church, they say miracles take place when present. Don’t loose ur faith love. N hope! Try Texas children’s hospital. Its in Houston… god bless u n take care

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