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Young and Very Sick

©Milan l Dreamstimes.com

We were watching our 2-year-old daughter run around the playground the other day when another mom approached: “How do you keep up with her? Wouldn’t you just love to bottle that energy?” Kelly smiled in agreement, but her mind went back to a time last year when we yearned for even one of those little legs to move an inch.

One Sunday afternoon in January 2007, our 14-month-old daughter, Lauryn, woke up from her nap and suddenly couldn’t walk. She couldn’t even put weight on her right leg. Alarmed, we called our pediatrician who advised us to go to the emergency room immediately. By the time Lauryn was seen an hour and a half later, she’d lost movement in her other leg and in her right arm.

The torture of wondering what was wrong with our baby lasted 24 hours, as the physicians ran test after test, with nothing conclusive found. Finally, we were told that Lauryn had a rare condition for one so young, something called Guillain-Barre Syndrome. Although unfamiliar with this autoimmune condition, which causes temporary paralysis, we were relieved knowing what was happening to our little girl, and we were optimistic that her condition could be reversed. The doctors recommended an immunoglobulin treatment that would keep Lauryn in the hospital for five more days. 

We had never had a child in the hospital before, and we were unprepared for an extended hospital stay. However, we did learn some important lessons along the way that may help other parents.

We found it’s useful to keep a notebook or a notepad with you at all times during your child’s hospitalization. In it, we wrote any questions that popped up over the course of the day. If we thought of something in the middle of the night, keeping paper and pencil on our nightstand helped us to avoid forgetting before morning. The notebook helped us stay organized. It also assisted us in remembering anything that cropped up during the course of the day before the attending physician made his rounds to our room.

Also, we learned to write down any diagnoses or lab results we received. It’s a guarantee that a spouse or grandparent will want to know every little detail, and in your anxious state, you don’t want to miss anything the physician said concerning your child’s case. Writing down details will help you retain it.

Remember that you are entitled to understand what is happening with your child. If your child has a doctor who communicates only in five-syllable medical speak, feel free to ask her to restate what she has told you in another way. Don’t be intimidated; as your child’s best advocate, you need to understand what is happening with her and what steps are being taken to cure her.

Another thing we learned is to accept the help of family and friends. Kelly’s parents traveled from Virginia to be with our other four children during Lauryn’s hospital stay. While we hated to inconvenience them, they were a godsend. Our attention needed to be focused on our child in crisis.

Designating a family member to share information with others was another useful practice. We would call Alan’s mother with updates and test results, and she passed on the information to his siblings and their families. Our time and energy were occupied with helping Lauryn, and it made it easier to have only one family member to call, instead of six or seven. Related to the issue of communication is to remember your cell phone charger, in the event that you will be staying with your child during her entire stay.

We also learned to accept help from friends. Families from our children’s school, our neighborhood and church offered to bring in meals. Those meals were a blessing to us, and, in retrospect, to the givers, who were able to feel they were making a difference to us.

For any parent whose child’s hospital stay is planned, Morgan Stanley Children’s Hospital of New York-Presbyterian suggests packing personal items that may make your little one feel more comfortable, such as a favorite nightgown or pajamas and a warm robe. A child’s special cup, book, stuffed animal or blanket might also help him feel more at home. Lauryn had her special, pink blankie and her favorite toys, which helped her adjust to being in a different place. An anxious child might be able to relax a little better with some photos of loved ones to flip through as well. Although many hospitals house a collection of DVDs and video games, if your child has a favorite, you might want to stow that in the suitcase, too.

While hospital stays involving children are often strenuous, stressful times, we found that the support system we had in terms of family, friends and medical staff was priceless.

Our last piece of advice is to remember to write thank-you notes for the medical staff who guided you and your child through the strains of hospitalization. Theirs is often a thankless job.

We left a thank you for all the staff at University Hospital’s children’s floor at the time of our daughter’s release, but it bears repeating. We are so appreciative to all who cared for our daughter, Lauryn. She was always greeted with smiles and affection by the staff who attended her. She received efficient and thorough care in both the emergency room and on the children’s floor. The nursing staff, in particular, were in every case courteous and kind, and for all of their dedication, we say a huge and heartfelt “thank you!” May all who have to live through the hospitalization of a child have such a supportive team.                                                                     

Alan and Kelly Taylor and their five children recently moved from their Liverpool home of 10 years to Greenville, N.C. Kelly holds a master’s degree in family studies; Alan is a newly appointed assistant professor in the Department of Child Development and Family Relations at East Carolina University. To comment on this article, write to editorial@familytimes.biz.

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