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Friday, January 18, 2013

Technology-dependence

Most people are familiar with the term "special needs" which encompasses anything from food allergies to autism to genetic disorders and the medically fragile. Technology-dependent children, however, are a relatively small population in terms of special needs. It's not often that you see or hear anything about children with these extreme needs that includes things like oxygen dependence/continuous oxygen saturation monitoring and children with tracheostomies who may be either partially or fully ventilator dependent. In short, these children rely on technology to stay healthy and, frankly, to keep them alive.

A month after Ella was born, she was transferred from the NICU at a regular hospital to the children's hospital. At this point, Ella had been diagnosed with a genetic syndrome (CdLS), reflux and feeding difficulty, and relied on a feeding tube to eat which was fairly drastic to us being new to the world of special needs. I remember very clearly looking down the opposing hallway while walking to the NICU and seeing the sign for the "Technology-dependent ICU" (or TICU) and thinking to myself, "My God, those poor children. What has to happen for a child to end up there?" It just sounded bad.

Admittedly, if I were to hear someone utter those words within earshot of me now it would probably upset me because, of course, in our eyes she's great. But just as I was naive back then and had no clue what technology-dependent even meant, I understand this is the truth for the general population.

A short five months later, we found ourselves to be the parents of a child admitted to the TICU. Ella had received a tracheostomy due to a small and fragile airway and an inability to be traditionally intubated. We had also learned that she had both central and obstructive sleep apnea and she was placed on a ventilator at night with some supplemental oxygen needs. It was a scary world to land in with a six month old infant.

But today, nearly five years later, all of this "stuff" seems so normal to us. Ella doesn't go anywhere with out an O2 monitor, suction machine (to help clear her trach), feeding pump, emergency trach bag and oxygen. She is only on the ventilator overnight. Though she has been and continues to go through a lot medically, she is the happiest child you will ever encounter. You see, even we can count our blessings though to a lot of people our situation probably looks frightening and less than enviable. It's all relative, isn't it?

It's not likely that you'll run into a family like ours very often. For one thing, most of our children get sick too easily to be out of the home much, however many do go to school. But if you do happen upon a family like ours, my hope is that you might remember this post and have a better understanding about what it means to have a technology-dependent child. If you look past all the medical equipment, you'll see that we're just a family, like you, doing whatever is necessary for our child to thrive.

Tuesday, January 15, 2013

180º

When we were at CHOP (The Children's Hospital of Philadelphia) last year for Ella's fundoplication revision, I was asked to participate in a study about decision making by parents of seriously ill children. As evidenced by this blog, I have never been shy about sharing my thoughts and experiences going through this life and agreed to take part. Today, four months later, I received a follow up survey which I just completed.

Many of the questions regarding my current emotions and state of mind were the same: to what degree have I felt anxious/
scared/hopeful/angry/guilty/depressed/proud/etc. As I was checking off my answers, it really hit me how much things have changed for the better in a relatively short period of time.

This past summer we experienced one of the darkest times, a close second to a few years ago when she was barely holding on to life on the oscillator after contracting RSV. This time, it wasn't the result of an acute illness but rather the process of her body and systems failing her. Nothing is scarier than watching your child deteriorate and not knowing how to stop it. I had just made the most drastic decision ever concerning her care by getting her transferred to Philadelphia to undergo a risky surgery. The alternatives we were presented with at our home hospital were risky as well, but also indicated that her quality of life would be drastically reduced. Thankfully, the surgery was successful and Ella is thriving.

It all feels like a dream now; like it didn't really happen. Once we headed home, I did my best to not look back - surely a coping mechanism at least in part. I think it's difficult to really gauge the degree of despair when you're in the moment. You know things are bad, but you're also focused on a solution so there isn't a lot of time for wallowing. But shutting out the experience once it was over didn't allow me to realize how far we have bounced back, until today when I did the survey. The difference is night and day. A complete 180.

There are never any guarantees, especially when dealing with a complex and fragile child. I know that won't be the last time we're faced with a tough situation. As things progress, we understand that our choices will become increasingly unappealing and difficult, but we can also rely on the fact that we have come through those dark times before and are stronger for it.

Saturday, January 5, 2013

What It's Like

I want to preface this by saying that nothing I post here is meant to invite any kind of pity. I know I have stated that before. I really just want to help others understand what this life is like and realize it's okay to ask questions and not feel sorry for us and to talk to us about our lives and our kids. It's also an outlet for me to talk things out as we move along in this journey and our perspective changes.

The best analogy that I have come up with to describe what it's like to have a child like Ella is it's like having a perpetual newborn. Any parent can remember the days of having an infant when they depended on you for everything. Eventually, most babies grow up and become more and more self sufficient as time goes on. But with a child like Ella, that doesn't happen. Just as when she was a baby, she needs us to do everything for her plus the medical stuff that comes along with her condition. She depends on us to be fed, changed, moved, etc. She can't tell us what she needs or wants or what is wrong. She doesn't sleep normally throughout the night. It's very similar to having a newborn that grows bigger in size.

You hear a lot about things like "baby blues" and postpartum depression which can be hormonal, but is often also situational for new moms due to things like less freedom, lack of sleep, the worry about caring properly for a fragile new child, and changes in social and work relationships. I think it's safe to say that just like our children don't grow out of the newborn stage, us moms often suffer from perpetual "baby blues" because the situation doesn't change much as they age. It's exhausting, challenging and stressful on an ongoing basis.

I'm lucky to be connected to hundreds of other moms in similar positions as mine. It's one of the most important things to my sanity. But it also allows me to know that dealing with extreme stress and mental health issues is rampant among us. Some are able to get by without medication or therapy, some are not. We all have to do what's best for ourselves and our own situations. And I think (hope) the stigma of dealing with these issues is decreasing because no one should feel ashamed about asking for help.

We are lucky to have access to private duty nursing for Ella. She is too fragile for daycare or school. It's difficult having extra people in your house, but you get used to it. I know that I can't physically or mentally do this alone. Just as babies grow up and are able to help take care of themselves, we have to bite the bullet and realize we can't do it all by ourselves forever. It isn't natural. So when the guilt creeps in that I have a nurse at night to sit and watch my child while I'm asleep, or so that my husband and I can take a break and go out for dinner, I have to snap myself back into reality that this life isn't normal and I deserve the reprieve. It's a constant struggle, similar to those I'm sure every other mom in the world goes through. I know that "mom guilt" is universal! This is just how it plays out in our world.