Maintaining Your Relationships

Month: March 2017

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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Adding Siblings to the Mix

Whether they are younger or older, siblings can add complexity to raising a child with a transplant. We only have N at the moment, but this subject is one that I worry about for when my husband and I eventually do have another child. How will we explain to them that N is different but the same? How do we not make them feel left out when N gets special attention with his medical complications and clinic visits? How do we make them feel just as loved and special? How do you answer their questions about everything involved with the

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A Scar Means You’re Healing

Something I’ve noticed in reference to children growing up with scars is that how we address them can shape how our children feel about them. In my narrow-minded, scientific outlook, I’ve always simply thought of them as exactly what they are. They are marks where a wound has healed, and that is reflected in the formation of new, fibrous tissue on the surface of the skin. That’s all there is to it. But that might not be all there has to be to it. I want N to think of his scars as symbols of strength, not weakness. In reading

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When to Loosen the Reins

How do you know when your child is responsible enough to handle their own medications? How do we know they will actually take them, and not just tell us they did while really skipping doses? I’ve seen posts on transplant Facebook pages where this exact thing has happened. One mom said that after her teenage son received his transplant, she kept track of his medications for a few years. Then she let him become responsible for them. She later realized that he had been missing doses. He became very ill and was soon thereafter diagnosed with rejection. When you do something

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Financial Assistance

Forgetting or intentionally skipping doses repeatedly can be catastrophic. Medication is the only thing between a transplant recipient and rejection, and honestly, it’s an extremely imperfect solution with no guarantee. It’s not an exact science, it’s ever-changing, and it’s no cure-all. The ideal option would be an organ grown from the patient’s own stem cells, which does seem to be a viable option in the future. However, right now we have to play the hand we’re dealt. It is imperative that your child receives his or her medication in the proper dose at the correct time. If you cannot afford

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Managing the Chaos

We were discharged with nine different medications, some of which had three doses a day, some were twice a day, and some were only once a day. Some were being weaned, so the doses were continually changing. We just about drove ourselves bonkers trying to keep track of which ones were due when, and which ones we had given each day. Our transplant nurse gave us a spreadsheet that we put in a plastic page protector. It had rows for the medication type and dose and columns for the day and time it had to be given. Below is a

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Dealing with Survivor’s Guilt

Another goal of Super N is that it’ll help N understand that his heart was a gift. If we maintain this idea that his transplant was given and donated out of love and kindness, it may help to suppress any latent feelings of survivor’s guilt once he fully comprehends the gravity of that situation. In Super N, we read that the other baby “didn’t need their heart anymore, so they gave it to Super N as a present.” I also wrote N a book called “My Miracle Gift.” It’s a sing-song rhyming picture book about what a transplant is and

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Super N

When we finally got discharged from the hospital, we had to stay in our Gainesville apartment for about a month before we were able to come home. Since we didn’t want to expose N to a lot of people (germs!), we pretty much stayed inside the house when we weren’t out walking the dogs. This offered me a lot of time to ponder how I was going to handle teaching N that he is not a normal child. I really struggled (and am still struggling) with how to go about doing this. On one hand, I want him to be

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Daycare

Daycare enrollment for us was quite the lengthy process. We finally got N enrolled in a center very near where we work, but they have an exceptionally strict vaccination policy. Strict as in: no vaccines, no admittance. And I love that, because I know that my N will be safe if all of the other students have had their shots. However, we’ve only gotten the vaccines that contain dead viruses. Since he is immune suppressed and can’t get live vaccines, that means he does not qualify as having met their policy. We had to pursue a waiver to get him considered

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