Founders and Advisory Board

'Been There, Done That' - Miscellaneous Comments from Those Who Have Been Through it Already

Another great site with lots of information about dealing with the various issues related to having a child with a medical condition can be found at Courageous Hearts .

Concerning Interactions with Doctors, Nurses and Medical Staff:

• You (the parent or caregiver) and the medical staff are a team working toward a common goal: the health of your child.
• You are a vital member of the team and have a right to medical information about your child (or yourself, if you are an older child or adult). You need to communicate clearly with your doctor(s) about the information you want and/or need to feel comfortable with the treatment plan.
• If you don't understand something, ask what it means. Keep asking questions until you feel comfortable with the explanations. You can't make informed decisions unless you understand what's going on.
• Don't forget that the pharmacist is a part of the medical team, too. You can get a wealth of information from the pharmicist including possible drug interactions (important when a lot of medications are needed), current research, new drugs on the market, and over-the-counter medications.
• In the hospital, the nurses are your family's advocate. Their role is to teach you and to help the patient recover as quickly as possible. Ask them about everything they are doing and if they can teach you how to hasten the recovery period.
• Unfortunately, there are some nurses, therapists and others who are incompetent. Do not be afraid to request that certain people NOT work with you or your child.
• If at all possible, have someone stay with your child around the clock while (s)he is in the hospital. It sounds overwhelming, especially if you have another child; however, many nurses have several patients that they are responsible for and if a monitor goes off, or your child is crying or has spit up, it may be a while until it is discovered.

  If you are in the room with your child, you might be able to prevent medicine errors (wrong dose, wrong med, etc.) and unnecessary repeated tests on your child. Also, it's human nature that a person is more careful about doing a good job when being watched, so the fact that you are in the room with your child can result in more conscientious work from the hospital staff.

• Don't be afraid to speak out. The best parents are the ones that occasionally make someone mad because they are making EVERYONE do their job and do it WELL. Remember that you are in the hospital to be the best advocate you can be for your child (not to win a popularity contest).
• Don't underestimate the value of the friendships that you can make with the staff at your doctor's office, hospital or pharmacy as well as the doctors, pharmacists and therapists themselves. By working together in a friendly manner, everyone wins! It makes the entire experience of working together much more pleasant if people communicate in a polite and friendly manner.
• You will find a wealth of information in your child's medical chart. Every hospital is different and many have rules that you must have a doctor or nurse with you to read the chart. Set up a time that will be convenient for you and the medical staff necessary to review your child's chart whenever you feel the need to do so.
• Learn the medical language used with you or your child. You can use websites, like this one, to help you understand basic terminology. You can also ask the medical team working with you to help you understand the words and phrases (and acronyms) that you need to know.
• If you ever feel uncomfortable with a certain procedure that must be done, it is acceptable to ask the doctors/therapists if there are other options available which might yield the same results.

Insurance Companies and HMOs

• You need to develop a working relationship with your insurance company or HMO. Most of the people who work for these companies are not familiar with CHDs and don't understand the complexities of what is involved in caring for someone with CHDs. Keep detailed records of who you spoke to, what was said (or promised), what you said you would do in return, if something is to be done by a certain date, etc. Keep a binder with all of this information and you will maximize the chances of having a successful outcome.
• You may have to fight to get things paid for. If so, be prepared to keep battling, because many insurance companies/HMOs won't pay until some situations have been reviewed repeatedly. You may have to contact the hospital providing treatment for your child if certain codes were used which are not commonly used by your insurance company or HMO. This is one reason why you must keep detailed documentation of any communication with your insurance company or HMO.
• Many hospitals and doctors' offices are aware that even a small percentage of costs that are to be paid by the parents can be overwhelming. Don't be too proud to ask for help. You may be referred to the social work office for additional financial help. Many institutions will reduce the cost or eliminate your obligation to them once they realize how extensive the medical issues are for your child.

You and your child

• Breastfeed your child if at all possible. Breastmilk boosts the immune system and there are other benefits as well. Some children with cardiac conditions have a difficult time feeding. If you can't nurse, you can pump your breastmilk and feed it by bottle, or even by dropper or feeding tube. While it is difficult emotionally not to be able to nurse, the most important thing is that your child gets breastmilk. However, if you are too emotionally distraught, it may not be possible for you to nurse your baby or even pump your milk. Every family needs to decide what form of feeding works best for them.
• Although you are busy being your child's advocate, don't forget to appreciate the little things. Never forget to be amazed by your child's smile (even with the nasal canula taped to his/her face). Cherish the hours you spend touching his/her hair or hand. Be grateful that you are able to give your child the medical treatment that would not even be an option in most parts of the world. Read a book, sing a song, rock him/her for hours. Tell your older children that the baby is SO LUCKY to have him/her for a big brother/sister and s/he is SO LUCKY to have such a special little brother/sister. Whatever the outcome, treasure whatever time you have with your baby.

Preparing your child for surgery or a hospital stay

• Start reading books like "Franklin Goes to the Hospital" -- a very good one that even goes into some detail about anesthesia -- and "Clifford's Hospital Visit." The Clifford book is about visiting a grandma, and isn't as helpful, but it's funny, so I think it made the hospital not such a scary concept.
• Find a thrift-store suitcase (a little one) and spray-paint it, then decorate it with the child's name stenciled on and pictures of all her favorite story characters and pictures of her family. Make this the "hospital suitcase," and let them pick videos and toys to bring in it.
• See if the hospital has a "play therapist" who can work with your child on the pre-op day - showing a little operating room with bears for the doctors and patients, or letting them see what the doctors masks look like, use a stethoscope, etc.

Dealing with Fear

Having a critically ill child is extremely stressful. The fear and uncertainty can seem overwhelming at times. One of the ways that parents can deal with these issues is to write everything down. Having your feelings written down can help to clarify things a bit, when everything is so confused and conflicting in your head.

"When Time Stands Still"
by Debbie Hilton-Kamm

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still

In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?

All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home

This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware

And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes

Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime

And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days

For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

"What I learned from the Fontan"
by Debbie Hilton-Kamm

1. A few weeks or months prior to surgery, get your child used to drinking and eating "clears" such as water, juice, jello and chicken broth. These are the only things allowed for several hours prior to sedation for the cath, echos and surgery.
2. Prior to the surgery, find out what type of sedation and pain meds they use, what the possible side effects are, and if there's anything that can be done to prevent the side effects. Also, find out if there are alternatives in case you're not comfortable with the choice of meds. Morphine can cause severe itchiness - so ask that Benedryl be administered at the same time to counteract it - and make sure the child's nails are clipped! Morphine can also make the child nauseous.
3. If your child has any problems keeping oral meds down, ask if there's a different version of that medication. Often, they offer different flavors, or a pill form that can be dissolved which may have a completely different taste, and may make it easier for the child to take.
4. Prepare yourself for listening to the possible negative outcomes when signing the consent. No matter how many times you've been through it, it is difficult to hear.
5. It's easier to hand over your child for surgery when they use Versed (I think that's what it was) -- Braedon laughed and giggled like a slap-happy drunk as he was carried back to the OR. Ron and I were actually able to smile as we saw him go. However, he also had Versed for his sedated echo and became a whiny/UNhappy drunk for about two hours as he came off of it. It was a VERY long two hours!
6. No matter how many times, and how many people you tell that you will be waiting in the hotel room during the surgery for updates - they will be surprised not to find you in the ICU waiting room - and they will not look at the notes for a phone number to call you.
7. If the baby can't take ibuprofen after surgery (he's not eating much or not keeping things down) an IV form of ibuprofen can be given called Toradol which is wonderful.
8. I never thought I could look at a child of mine in the ICU, just after open heart surgery, still on the ventilator, and say, "wow - he looks really good!"
9. Being in the room as they pulled the chest tubes was nothing compared to watching Braedon velcroed to the wall for the chest x-ray.
10. It's critical to keep on top of the pain medicines (and the nurses who administer them.). The pain can creep up and by the time it's obvious the child is uncomfortable, it's much more difficult to control.
11. Keep a running tab at the bedside of when each pain med was given. It is especially helpful if you are taking turns watching the child with someone else, and when the nursing shift changes happen. It's also helpful in the middle of the night when you can barely remember your name - let alone what med was given when.
12. It's amazing how much better the kids feel once the chest tubes are pulled. Braedon slept off the sedation in Daddy's arms and when I returned about an hour later, I expected to see him still sleeping. I had to do a double-take as Braedon came running down the hall towards me holding Daddy's hands - with the biggest smile I've ever seen!! That is an image that I will never forget!! (PS - Discouraging your child from running up and down the hospital hallways an hour after having the chest tubes pulled is probably a good idea - but good luck!)
13. Participate in studies only if you fully understand the risks and benefits. Do not participate in "studies of studies" - those that want to (supposedly) monitor how well a study was explained -- especially if it includes a 79 question survey with questions like, "Do you need security in your life? Do you consider yourself a generous person? Do you have trouble trusting people?" (What the heck was that?? I think they had the men in white coats waiting outside the door to come get me!!)
14. Keep nurses with thick glasses and scissors away from your child at all times.
15. Getting a private room - or at least one that is away from the noisy nursing stations makes a huge difference in getting some peace and quiet.
16. The parent beds at U of M ( note from editor - and many other hospitals! ) are made for those under four feet tall.
17. Start ordering full meals as soon as you are moved to the floor - one of the parents can at least have free meals if the child isn't eating yet.
18. With a fenestrated fontan, a smaller fenestration takes a little longer to adjust to, but there is more of a chance of it closing on it's own.
19. Oxygen sat levels are important - but not as important as the output: having high sats if the blood is not getting out everywhere is not as good as having lower sats that are reaching all parts of the body.
20. With the fenestrated fontan, the sat level doesn't increase a lot immediately after surgery - many kids sat in the 80's, and as the fenestration closes over a few months time, it usually goes up into the 90's.
21. After the fontan, follow ups include only echos, x-rays, and EKG's - nothing invasive like a heart cath unless there are complications or problems in the future. YEAH!
22. Get a picture of your child with your surgeon - hopefully it will be the last time you will see him!!
23. There's no substitute for being in contact with parents who've been through this - you are all wonderful! (Well, I guess I didn't just learn that, but it was definitely confirmed!)