Tips for Parents Preparing for Their Child’s Surgery
I am gathering a wealth of experience in how to “do” the pre-surgical worry dance. My son Gerard’s two previous surgeries were lightning fast decisions that left me shouting, “Wait, wait, I’ve still got to pack the car…” or otherwise.
This experience has been quite a different one in terms of the waiting period. My son’s surgery date for the fontan, a complicated heart surgery, was scheduled 2 and 1/2 months ago. That is a LONG time to wait for anything. So in the true spirit of journalism I took this question out to a variety of people “How do you survive mounting anxiety like this and still manage to not completely lose it?”
A number of families who I correspond with on the pdheart mailing list said “drugs.” Yes, drugs, the legal kind that is. It actually surprised me the sheer number of responses I got on various anti-depressants and their efficacy, whether Xanax was okay to take short term or would you really get addicted. Some people only needed a sleeping pill, others needed anti-anxieties like Buspar, others hoarded a bottle of valium and used it only during hospital stays. One woman wrote that the only thing her husband takes is a drug called “D Nial” (okay bad joke I know). All he needs is a dose of reality to fix that up.
Many wrote that such things were positive “life-savers” while still others said they couldn’t feel a difference one way or the other. All were in agreement, however, that should you choose to try any number of different prescription products for anxiety, that you do so under a doctor’s, and preferably a psychiatrist’s care.
In a recent chat with Judith Laughlin, LCSW, at UCSF, she mentioned that this is her preference when she counsels parents on this topic. In her opinion, a general practitioner may not be able to significantly recognize the psychological let down if after making a decision to try a drug, the drug doesn’t work as you hoped. The doctor can then prescribe something else, but does he or she understand that the patient may really be suffering for having “failed” with the drugs. By combining both medicine with psychology, as in psychiatry, the doctor is then able to address not only what may be the most appropriate choice of prescriptions (if any) but also psychologically assess the effect the drugs are having on the patient.
Others absolutely scoffed at the idea of using any kind of drugs and found different ways to beat the stress. Many relied on prayer for comfort, and some used meditation techniques to try to remain calm during the “difficult times. Many parents suggested that therapy was very helpful, in both individual and couple’s sessions. Parents with older children also involved them in play therapy sessions where the whole family could work out some of their angst about upcoming surgeries. For other families, just getting on the phone and talking to friends, and having a safe place to call (even if very late at night) kept them going.
Michele Rintamaki of Kids with Heart (Greenbay WI), says she gives parents the following advice: “Prepare yourself through educating yourself about your child’s condition and by asking as many questions as you can. At the same time instead of focusing on the surgery, focus on the positive outcome of the surgery, the things your child might then be able to do. Plan activities for after getting out of the hospital like a trip to a fun family location (with doctor’s approval of course). And keep in touch with others who have been through it. They will be the most patient listeners of all, because they know how hard what you’re doing is.”
Another mom suggests also that seeing a therapist is a marvelous help in lifting some of the stress. And further cautions that she believes any type of medicinal solution (anti-depressants and such) should definitely also mean seeing a therapist as well. She suggests: “Find someone whose area of expertise is in working with families who have children with chronic illnesses.”
Another mom who shall remain nameless swears by consuming vast quantities of Ben and Jerry’s ice cream as the real stress breaker. Unfortunately that also means you may have to shop for new clothes before your child’s hospital stay so you might want to use this method with care.
Being the true investigator, I have tried all the above methods (unfortunately could never get the D NIAL to work for me at all). I’ll tell you what frustrated me about the methods proposed. There is no one location to call to FIND a good therapist with the type of specialties Lisa suggested and there is no RIGHT way to get through this. I am painfully reminded here of my love for the “Star Wars” trilogy, when Yoda says to Luke, “Do or Do not, there is no try.” How apt! Like it or not whether we walk into this peacefully, or are dragged in kicking and screaming, there is no choice but to “Do,” as Yoda puts it, once we have decided that our child’s life has value and is worth saving.
I’d like to make a few suggestions then on how to “survive” these high stress events based on the collective knowledge of the parents and doctors I’ve spoken with:
1) Start out by educating yourself so that you feel included in the decisions being made about your child;
2) Reach out and touch someone. Find internet groups or local support groups to help you through this time;
3) If, in spite of this, you still find yourself really stressed out, make direct contact with a social worker at your children’s
hospital and ask for recommendations of therapists and or psychiatrists to help you with either traditional therapy, medicine or a combination of the two;
4) Keep tabs with your new support system and be honest when something isn’t working for you. And Don’t, if you and your doctor decide to use a medication, feel that you are somehow guilty and aren’t strong enough. As I put it to my general practitioner, choosing the pharmacy path was like making a choice between walking up 25 flights of stairs or taking the elevator. Why must I make it harder on myself by always choosing the stairs?
5) Bear in mind that this EXTREME stress is directly related to an event which will occur, your child’s surgery. On that day many of our unanswered questions will be answered. We may not have fixed everything but we have MADE it there. And as we spend these days in the hospital helping our children to recover, we can still rely on the above methods to keep our stress level down.
In the pre-surgery stress dance, we all learn the steps. Each of us learn a slightly different dance, shape the music to our own mood and come up with our own beat. Our dance shares in common that when we live through these hellacious moments we have INVENTED and PROVED a coping method. And this is not a dance competition by any means. There are no judges except our inner judges. Sometimes these inner voices are harder on us and ask more of us than we can really give.
Accepting that you are not attempting to come up to some definitive standard that has been designed by the greater world, will give you more freedom to move in this dance. Catastrophy, fear,worry, stress are part of our lives , as are love, friendship, miracles and joy. That moment will come when you once again hold your child, whole and well and together can begin a new dance: one that speaks not of what will be, but of what is.
