Prepping for a Procedure

Prepping for a Procedure

Whether it’s your kiddo’s transplant surgery, or something as low-key as getting ear tubes, your child undergoing a procedure can be pretty frightening. Luckily, there are several things you can do to ease your worries and those of your transplant warrior. I’ve found that there are three main keys to success when your warrior needs an operation: education, communication, and preparation. Education. My number one piece of advice is to learn as much as you can about the required procedure. Knowledge is power. When you are armed with information, you can know what to expect, and fewer unknowns means fewer

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Resources for Kiddos

I’ve seen a lot of questions on social media about children’s books that explain the transplant process in an age-appropriate way. Books are such powerful tools when children are young. Kids identify with protagonists, and how they view the world can be shaped through those portrayals. Books help teach life’s most difficult lessons, and they illustrate those lessons in a way that children can understand. I have yet to find a children’s book about transplants (in general), so I wrote my own for N. I call it “My Special Gift.” I have included my original sketches and the text below.

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When We Can’t Always Be There…

One of my biggest sources of stress is the thought of what would happen if N needed medical treatment and I wasn’t there. This could be the case if I am physically absent (daycare, babysitter, etc), or if I was somehow incapacitated (car wreck, etc). I worry that first responders wouldn’t know if certain treatments were dangerous to him, or if there was something extra they needed to do given his medical history. In order to combat this nagging fear, I’ve actively taken steps to ensure his conditions will be known to first responders in either scenario. First and foremost,

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Keeping Strangers At Bay

I recently published an article for Today Parenting, and it ended up on the Today Show’s Facebook page! I got a ton of (mostly) constructive feedback from others, many of whom are experiencing the same phenomenon. Now, as is the nature of the beast that is the internet, I did get a few less-than-helpful comments. My favorites were these two gems: “Here’s an idea. Keep you [sic] “immune-compromised” baby in your house. Not all germs are transferred through touch. Some are airborne and none of them care who they land on.”  (I’m sorry, why the quotations around immune compromised? As if I’m

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Therapy Programs

Sometimes extended hospitalization can lead to a need for different kinds of therapy. Like I mentioned earlier, N needed occupational, speech, and physical therapy while he was recovering in the hospital. However, he still needed professional help even after we got home. When his neurologist told us he still needed therapy, I was hurt. No one wants to hear their child is developmentally delayed. I took it as a personal insult, even though N was very clearly “behind” from lying still in a bed for 11 weeks. At five months old, he could barely move his arms and legs to swat at

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Celebrate the Victories

I grew up in a household where every victory was celebrated, even if it was just with a giant bear hug. This made each of our accomplishments that much sweeter, because they were acknowledged. In the medical realm, we can’t always guarantee victory, no matter how much effort or hard work we put into maintaining our health. That can be a hard pill to swallow, especially for a child. Even when we do everything right, sometimes things just go wrong. That’s why I still celebrate all of our victories. When things do go right, it really is cause for joy! Last year,

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Social Situations

Social events and situations can be difficult to navigate when you suddenly become acutely aware of the billions of bacteria present on literally everything we touch. I considered myself cognizant of cleanliness and sanitization before N became immune suppressed. But since he’s become so vulnerable to infection and disease, my sensitivity to these things has increased about a hundred times over. Whenever we go out to eat, I always take a Lysol wipe to clean any surfaces I think N may be able to reach, to include the sides, and often the underneath of, the tables themselves. Typically I get

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Meeting Your Donor

We have not yet met our donor; in fact, we haven’t received any contact from them at all. I am hopeful that some day we will, but I have no idea what to do if and when that day comes. How do you act around them? Do you speak to them about their loss? Do you plan something fun, or should the meeting be somber? The answers to a lot of these questions are highly situational. How you behave and what you say will depend on how much time has passed, what their demeanor is, and how much contact you had prior

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Maintaining Your Relationships

Adulthood in general is difficult. Add in parenting, and it becomes a complete mess. Add in a child requiring a transplant, and you might as well just sit back and sip a martini as your life dissolves into utter chaos. It is in these times that patience and understanding are the keys to maintaining healthy channels of communication and preserving your relationships. My husband and I had very different coping mechanisms while N was in the hospital, and it was very difficult for me to understand how he handled his emotions. He took one day at a time and focused

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Writing Letters to Your Donor

One of my biggest fears surrounding our donor’s family is that they will hate me. I’m afraid they will resent me for having their baby’s heart beating in my son’s chest. I know it was their decision to donate their child’s organs, but it certainly wasn’t their decision to be put in a situation where they had to make that choice. No one wants to be faced with that call. I’m afraid that they’re angry with me for being able to be happy with my baby when they cannot be with theirs. People say it’s silly for me to feel

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