My husband and I received some great advice on the day of our son Jack’s first MRI. We were naturally nervous about our baby boy undergoing anesthesia and anxious about what the results might show. Right before the procedure began the anesthesiologist, upon seeing the state I was in, gently but firmly stated, “Cool parents make for cool babies.” Four years later, this is something we say to ourselves on every MRI day. As stressful as the day can be, we try to remain as calm as possible for our beautiful boy. We see a large, tube-shaped machine that we know can be claustrophobic and very loud. Please know that your son, with no previous knowledge of this incredible device, will not see what we see. He may see a tunnel, a space ship, or even a choo choo train! Their imaginations are endless. Go with it. If we can make this fun for them, that is the first step to building a fearless routine.
Before getting out of bed on MRI day, pat yourself on the back for getting to this point. There was likely a lot to coordinate on your end. Every facility has different requirements for scheduling, but more than likely you will need to have your son be confirmed by one of his doctors that he is healthy enough to undergo anesthesia. This may involve having medical clearance forms filled out. You will also discuss your son’s adrenal insufficiency status with his endocrinologist to determine if any medication is needed before the procedure. Remember that your son’s first MRI and many that follow will be under sedation or general anesthesia. Yes, this can make the day of the MRI stressful. It is, however, a necessity in order to get good images of your son’s brain. After the first few you will become accustomed to the way your facility arranges for the procedure and will feel more comfortable with the routine.
Fasting is a necessity when anesthesia is involved. It can be difficult for a child of any age. It is hard for the parents too, as you will feel too guilty to eat in front of him during that six hour period! Plan the day out well in advance. If your appointment is early, it may make sense to leave the house without even going in the kitchen. Other times it will make sense to have a 5AM all-you-can-eat pancake breakfast that you hope will carry him through the day. You know your son best. Do what you think will make him most comfortable depending on the time of the MRI. Bring toys to distract him. Besides being hungry, there may also be delays when you arrive at the facility. We always put one or two Christmas gifts away in a closet and save them for days like this.
Every facility has different rules with who is allowed in the MRI room. Where we are monitored, one parent is allowed to go in the room up until the anesthesia kicks in. Right before the anesthesia is administered, the nurse will place a mask over your son’s face. He will fuss with it, but then in just a few seconds he will be asleep. We practice with a white dust mask at home when we play doctor with Jack. This has helped tremendously. You can purchase one at any hardware store. I like to think that if he is calm and happy right before he goes out, he will wake up happy. So far we have been lucky and that has been the case. There are some very normal side effects to general anesthesia, however, so it’s a good idea to ask your neurologist or the anesthesiologist that day what to expect afterwards.
Waiting for the MRI to be finished may seem like some of the longest moments of your life. Make friends with people in the waiting room. Read a book. Grab a quick bite to eat from the cafeteria. One mom I know goes to the hospital’s chapel to say a prayer. I love that. Do what you need to do to pass the time. Rest assured your son is in good hands.
Recovery time varies with every child and with every MRI. While you will be anxious to get your son home, resting afterwards is important so that his vital signs can be monitored. Water or juice may be offered to help with hydration once he is awake. The recovery nurse will give you the green light soon enough and you will be so happy to be on your way home. Rest as much as you can with your boy afterwards. It is a long day mentally even if it isn’t physically and it is just as draining on us as it is them. Put your son’s release papers in a safe place. You may need them for human resources at your job if you took the day off. Also if your son isn’t feeling like himself the day after, you may want to call the phone number provided just to check in.
At some point your son will be mature enough to sit still through the MRI without the need for sedation or anesthesia. This age varies from child to child. Ask your neurologist what is available to your family to help prepare for this. Some of the major children’s hospitals have goggles inside the MRI that allow the child to watch a cartoon or movie during the procedure. Some may not offer that technology, but may employ child life specialists to help calm your son right before the MRI begins. If these are not options, again, practicing at home is great way to prepare. Some parents practice lying very still with their sons for extended periods of time. With your doctor’s help, you will determine the right age for your son and the day will be that much easier once anesthesia is out of the picture.
If there are no ALD specialists at your MRI facility, be sure to make arrangements to get your son’s images to a specialist. They may be sent electronically or on a disc. Our hospital has a film library that holds all of the images of their patients. We check in with the library on MRI day to get our son’s scans on a disc before leaving.
Always remember that knowledge of ALD before symptoms occur is a gift. As much as I dread MRI day, I am thankful that this technology exists so that we can get our son the treatment he needs to save his life should something show up on a scan. If all is well, consider celebrating as a family after good news. A mom suggested this to me once and I think it is a great idea, even if your son is too little to understand. It is also a great way to include siblings that may have had to rearrange their days as well in order to make MRI day happen.
My hope is that this letter provides good advice for preparing your son and your family for the many MRI days ahead of you. My son is a happy and resilient little boy who shows no fear of this process. No one knows your son better than you do. You will learn the best way to prepare him and make this a normal part of his life.
Wishing you love and good health,
Miranda McAuliffe, New York
