Having a child with cystic fibrosis brings lots of new things that we never imagined we would be doing when we decided to become parents. Preparing for medical procedures is at the top of that list.
As an educator and an accountant, my husband and I certainly were not equipped with any background knowledge on the possible needs of a child with a chronic illness when we became parents. I will never forget the first time Dean went home on IV antibiotics. The nurse explaining the process to us had me convinced we would end up killing our child with a bubble in the line.
Dealing with new -- and old -- procedures and preparing Dean for them can be overwhelming and terrifying for my husband and me. We know Dean, who is now 7 years old, can become very nervous, anxious, and fearful, so it is extremely important to us that we do all we can to help him relax beforehand and try to allay his fears. We are definitely not experts, but we try our best. Here are five rules we try to follow to help Dean prepare for a medical procedure -- whatever it may be:
- Be honest. We decided very early on that we would always be honest with Dean about what is happening with his cystic fibrosis. Before any procedure -- from a blood draw to inserting a peripherally inserted central catheter (PICC) line -- we explain what is going to happen and answer any questions he has. If we cannot answer the questions, we help him ask the hospital and clinic staff. We want Dean to be comfortable asking questions and advocating for himself as he gets older, so we do our best to instill this trait as we go.
- Honor the emotions. Fear is a very real thing and although it may seem irrational at times, it is very deep for Dean. In his mind, getting a dressing change is just about the worst thing that can happen. As frustrating and painful as it can be to hear him scream and cry, we sit through it. We encourage him to take deep breaths. We tell him it is OK to be afraid. We tell him he is strong. And, we know it won't last forever.
- Utilize hospital staff. We are very lucky to have child-life specialists at our care center. Their sole job is to support children through their procedures, hospital stays, and tough days. They explain to children what will be happening, provide distractions, and go back with the kids when parents have to stay behind in the waiting room.
In addition to the child-life staff, we have asked for help from our favorite clinical research nurse when she is available and Dean has a procedure. We have asked for this nurse, Miriam Davis, to come and see him, stay with him during procedures, and make him laugh. Dean has been part of several clinical research projects and formed a close bond with the research staff. These hospital staff members are a tremendous help.
Give something to look forward to. Some may call it a bribe or a reward; it doesn't matter to me because it works. It's a huge help when Dean knows he will get something he wants after he's done. Before a procedure, we always talk to Dean about what he might want at the end of the day. This can be something as simple as his favorite dinner or a family movie night, or it could be a new stuffed animal or a playdate with a buddy.
Know it may not work. No matter what we do to help prepare Dean, we know he still has emotions to deal with and there still may be a meltdown. We are not always able to comfort and prepare him. We take lots of deep breaths, give lots of hugs, and stay as positive as possible.
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