Brave Just Like Me

Dealing with Your Child’s Hospitalizations and Surgery

Kim R — Sat, 02 Apr 2011 02:32:56 +0000

Remember always that you are your child’s best advocate.
Do your homework. Gather all the information you can in advance of the surgery, so you know what to expect and are comfortable with the decision you have made. Consider asking a trusted friend to conduct medical research for you, if you are not able to do so. Your hospital should have a medical library and a medical librarian. Google with caution. Don’t believe everything you read on the Internet and be aware that a limited amount of information can be a dangerous thing.
Keep a notebook and pen with you during all meetings and the hospital stay, write down your questions and take notes. Maintain a daily journal to record progress on medical conditions, medications, treatment, and blood work during the hospital stay and recovery period. Not only will this help you remember important information and recognize progress, but it will have a positive effect on the way the medical staff treat you and your child.
Keep in mind that medicine is not an exact science. It is a “practice,” which requires a series of educated guesses, trial and errors. The medical staff, while clearly experts in their respective fields, are only human and can make mistakes.
Establish a respectful relationship with your child’s doctors and nurses. Respect leads to better communication and quality care, which is in the best interest of your child.
Don’t be afraid to ask questions and to ask physicians and nurses to explain and/or spell medical jargon.
Don’t be afraid to ask for a second or third medical opinion about the need for surgery, any treatment alternatives to surgery, and the timing of the surgery.
Make sure your pediatrician has privileges at the facility where the surgery will take place. If he/she does not, ask how she will be kept informed. Be aware that you may be the one who has to keep your pediatrician in the loop.
Talk to your insurance company to ensure the facility AND surgeon AND anesthesiologists are in network. Be aware that in some cases a facility may be in network, but a medical specialist practicing in that facility may not. Confirm your deductible and any patient co-pay/financial responsibility. Determine any preliminary requirements and the need for pre-authorization.
Ask if there will be someone from the surgical team available to keep you apprised of progress during the surgery and how often you will receive updates.
Consider using carepages.com to keep family members up to date. It is less time consuming than calling everyone and it can be difficult to use your cell phone in certain areas of the hospital.
If there are complications, ask for time to make difficult decisions if you feel you need it. However, be sure to ask if any harm can occur if a decision is delayed a few hours or a few days.
Find out in advance what to expect after surgery. Will your child be on a ventilator? If so, for how long? How long before you can lie in the hospital bed next to your child or hold your child? You want to be prepared for how your child will appear when he/she comes out of surgery and any limitations.
Ask if the surgical team will allow parent assisted anesthesia, so you can be with your child as he goes under anesthesia. Ask if you can be at your child’s bedside in recovery before he awakes, so your face is the first face he sees.
Ask if you can stay in your child’s room over night. Ask how many people and who is allowed to visit. Understand there may be good reasons for any limitations.
Ask for a private room if at all possible. Determine any financial implications that may result.
Know that you are entitled to personally examine and review your child’s medical chart.
Ask if you can listen or participate in rounds or interdisciplinary team meetings for your child.
Get to know your nurses. You will find the physicians, surgeon and other medical specialists have limited information and interact with your child less than the nurses do. Nurses often have the “big picture” and have a broader range of information about your child. Also, nurses work on the front lines and are often the ones who “save” children’s lives during times of crisis. Also, if your child is in the hospital for extended periods of time, getting to know your nurses and being pleasant with them will motivate them to request your child for subsequent shifts. This gives you and your child some continuity and improves the care and attention your child receives.
Stay on top of pain management. This is the one area where hospitals routinely fall short. How will your child’s pain be assessed and managed? Who is responsible for pain management? Record in writing when pain medications are given, so you know when they have been delayed and are needed. Consider asking for Tylenol to help get your child through periods of time when pain killers are wearing off.
Consider asking for a numbing agent such as Emla or LMX before (apx. 30 – 45 minutes before) IV’s or arterial lines are inserted or before blood draws. Also, some hospitals have a freeze spray they can use to numb your child’s arm or hand right before a blood draw or IV.
Keep a list and monitor all medications and specific doses given to your child.
Personalize your environment. Bring some comforts from home for you and your child, such as a pillow, favorite blanket, pajamas or cherished toy. Depending on your child’s age, you may want to plan some entertainment to keep her busy as she recovers but is constrained to bed.
Ask if the hospital has wireless internet service available in patient rooms.
Ask if there is a laundry facility on the floor or in the hospital for patients.
Ask how you can be involved in your child’s care. Can you change diapers, clothes, potty, or bathe your child? Can you feed your child or help administer medications?
Ask your nurses about the protocol for measuring food intake, bowel movements, and urine output. Ask for guidance on how to read and understand your child’s monitor and any other equipment in the room. It will help reduce your stress if you understand what the alarms mean.
For extended recovery periods, consider asking for Child Life services. They will provide toys, art projects, and other activities before and after surgery. They can also help create a diversion during blood draws. You may also consider music, pet, or art therapy, if offered by your local children’s hospital.
Be sure to take time to eat and rest. Parents may not be allowed to visit their child at the hospital if they become sick. So, your health is very important.
If you belong to a church, keep your priest, pastor, or rabbi informed. Ask for your child to be placed on any available prayer lists. If you do not belong to a church community and want spiritual counseling or support, the hospital will have chaplains available to you.
Take any concerns about patient care to the nurse manager. If the nurse manager is unable to resolve the problem, consider asking for a patient advocate or ombudsman.
Consider writing a note of thanks or write a personal note about exceptional patient care, which can be included in an employee file. Participate in any surveys so the hospital can identify areas for improving care.

Dealing with Severe Reflux

Kim R — Fri, 02 Apr 2010 02:42:46 +0000

If you believe your child has reflux you should seek an appointment with a pediatric gastroenterologist as soon as possible.
Consider getting a videofluoroscopic swallow study (VFSS) modified barium swallow study (MBS), or endoscopy to ensure that your infant does not aspirate from her reflux.
Explore with your child’s pediatrician and specialists any potential underlying causes or aggravating factors contributing to your child’s reflux symptoms (such as a hiatal hernia or Celiac disease). Sometimes reflux can be improved with a change in diet, a change in medications, or a medical intervention.
Be aware that severe reflux can cause failure to thrive, which can lead to poor growth and development. A great deal of pressure and stress is put on parents to put weight on their child in these cases.
Reflux can also contribute to speech delays. Consider feeding therapy or speech therapy to help your child with his suck swallow reflex and oral motor development. Your state’s Early Intervention Program can provide these therapies at little to no cost to you (depending on your ability to pay). These therapists will come to your home to treat your child, so you do not have to take your child out of the home for these appointments.
Be aware that reflux can lead to other feeding problems that are not merely the result of bad behavior or control issues. Reflux can make children fearful of food because eating causes them so much pain. Keep in mind that your child’s refusal to eat or drink may be the result of pain and fear. This realization alone may help you shore up more patience and understanding when struggling with your child at meal time.
If you find yourself frustrated with your child’s refusal to eat, you may want to recruit a family member or friend to try to feed your child. This change in approach may be enough to at least temporarily divert your child’s attention away from the fear and pain she is feeling and it could give you a much needed break from stressful feedings.
Be aware that psychological problems may result from prolonged cases of reflux. Consider consulting with a psychologist or developmental pediatrician if you suspect this is the case.
There are inpatient and out-patient feeding clinics and a number of surgical interventions (such as a gastric feeding tube or nissen fundoplication) that can help your child with severe reflux and feeding problems. Consult with your pediatrician and pediatric gastroenterologist regarding the advantages and disadvantages of these options. Be aware that feeding clinics may have long waiting lists.
Also, be aware that there are special thickeners (such as Simply Thick) and special bottles to accommodate thickened liquids and formulas, which can reduce reflux and the potential for aspirating on liquids.
When considering calorie supplements such as Polycose and Duocal, be aware that the fat in Duocal can aggravate your child’s reflux.
Consider smaller, more frequent feedings to minimize vomiting and weight loss.
Consider alternative therapies. In some cases, chiropractic treatments can be quite effective at reducing the severity of reflux.
Having a child with severe reflux makes it difficult to leave the house, given the fear that your child will vomit and you will be left cleaning up the mess in the car, in the store, or at a friend’s house. Consider having friends visit you at your home, ask neighbors and friends to run errands for you, or consider having groceries delivered if you or your spouse are unable to go to the store without your child in tow. This will help minimize your stress and anxiety.
When you do leave the house, take plenty of wardrobe changes for your child and for yourself. Consider putting protective coverings over your car seat under the baby seat or booster seat. Consider also keeping garbage bags and cleaning supplies in the trunk of your car.
You may have to change your child’s bedding multiple times during a single night. Consider layering multiple sets of sheets and waterproof padding on your child’s crib or bed for quick changes.
Be aware that there are reflux wedges and slings that may be safer than elevating your child’s crib mattress.
Feeding your child over hard (tile, wood, or linoleum) floors will help reduce the amount of time you spend cleaning up vomit and the amount of damage to furniture and carpet. The kitchen floor may not be as comfortable as the rocking chair in your bedroom, but it could save you blood, sweat, and tears in the end.
There will be days when you feel like you are swimming in vomit. Admit when you feel overwhelmed and ask for a friend or family member to care for your child so you can get away for a while. If you do not have a friend or family member who can give you respite, consider a reputable respite program. Your church may be another good place to look for people who can provide respite. Many churches have special ministries and support services for families who have children with special needs. Also, be aware that there may be some family support programs in your community that can help you pay for respite services, even if the services are provided by a friend. It is very important to your mental health and your relationship with your child that you get a break from the reflux, vomiting, and feeding issues.
Recognize when you are feeling angry and upset and leave the room. Forgive yourself when you do lose it.
Consider joining a local or online support group for parents who have children with GERD. Your child’s gastroenterologist should be able to refer you to one.

Dealing with Blood Draws

Kim R — Fri, 02 Apr 2010 02:42:18 +0000

If your child has frequent blood draws or a medical condition that can require STAT blood draws, ask your child’s pediatrician or medical specialist for a standing order. In some cases, it may prove helpful to have two standing orders on hand – a short order (to cover the basics) and a long order (for more comprehensive testing). Having a standing order on hand can save you time running to the doctor’s office or waiting for the physician to fax the lab slip, and it will help ensure there aren’t any blood tests that are accidentally omitted in situations requiring a lab slip to be written up in a hurry.
Consider using Emla or LMX to numb those areas of your child’s arms where blood is taken a good 40 minutes in advance of any blood draw. You will need to cover the Emla/LMX with Tegaderm (or saran wrap in a pinch) to activate the numbing agent. Use the Emla/LMX liberally. These numbing agents will help minimize pain and suffering for your child.
Ask around and find a phlebotomist that has a good reputation for drawing blood from children. If the phlebotomist you take your child is not good at getting blood from your child on the first try, then shop around until you find a phlebotomist who can. Be aware that hospitals have some of the best phlebotomists, who are generally available 24/7 to draw blood for outpatients. Also, some hospitals and ERs have a freeze spray they can use to numb your child’s arm or hand right before a blood draw or IV.
If you take your child to a lab outside a hospital for blood work, consider making an appointment online in advance for your child’s blood draw to minimize time in the waiting room.
Try to go to the same lab every time. Be aware that labs may use different methodologies for certain blood tests. A change in methodology could make it more difficult to identify and explain fluctuations in your child’s blood work.
If you do change labs for your child’s blood work, let your medical provider know and ask whether the change in labs could explain any concerning discrepancies between current and previous test results.
Talk to and prepare your child for upcoming blood draws, even if you think he may be too young or unable to understand. You don’t want your child feeling blindsided or living in fear that he has to get a blood draw every time you load him into the car.
Try to schedule pleasant activities directly following blood draws. This will give you and your child something pleasant to talk about and look forward to during the procedure. Try to give your child a voice in what these pleasant activities will be.
If your child is fearful of blood draws and has to get blood draw while in the hospital, you may want to consider asking for Child Life Services to assist you with the blood draw. They can help distract your child, and they will find ways to make the experience more pleasant. Keep in mind that Child Life Services may also be available for ER visits and IV placement, depending on the time of day/night you are in the ER.

Dealing with Billing and Insurance Issues

Kim R — Fri, 02 Apr 2010 02:39:16 +0000

Keep yearly files for medical bills, insurance statements (explanation of benefits) and flexible spending statements. SAVE EVERYTHING!
Know your insurance coverage. Be aware of any annual or lifetime caps on medical coverage.
Do not automatically pay a medical bill that is sent to you. If the bill is more than you were expecting (as per your deductible and standard co-pay requirements), call the provider AND the insurance company to question the bill. Most insurance companies will initiate a three way call with the medical provider and you to work out any problems. More often than not there is a coding error that is the cause of the problem, and the issue will be resolved without you having to pay more than your standard co-pay.
Take notes and include the date and names of the people you talk to about any insurance or billing problems. SAVE THESE NOTES.
Don’t assume your medical providers properly billed your insurance company. Also, don’t assume your insurance company has a good reason to deny coverage on a claim. QUESTION EVERYTHING.
If you have an HMO make sure you get referrals for all specialists and pre-authorization for any special tests. Referrals will not be applied retrospectively. Request them far in advance of any medical appointments or procedures.
If you have an HMO, keep copies of all your referrals and stay on top of when your referrals expire. Don’t trust your child’s medical providers to tell you when a new referral is needed. They may not tell you and your insurance company will then require you to pay a larger portion of the medical bill. There is no way to avoid paying this larger portion in the event you forget to request a referral in advance of a medical appointment.
Don’t assume your insurance company’s requirements will stay the same year after year. To be safe you should check with your insurance company before any major tests or medical procedures. A little bit of time on the phone in advance could save you a lot of money later.
If your insurance company tells you something that seems inconsistent or too good to be true, it probably is. Trust your instincts. Ask for information to be sent to you in writing and/or call your insurance company and speak with a different representative on another day to ensure the accuracy of any information that seems questionable.
Consider signing up for a flexible spending account to help pay for out-of-pocket medical expenses.
If you don’t have flexible spending, keep copies of all medical bills and try to qualify for an itemized deduction on your taxes at the end of the year. Be aware that you cannot deduct medical expenses on your taxes that have been paid or reimbursed through a flexible spending account.
Be aware that some counties offer family support programs that will help you resolve insurance problems. Some of these programs may also help you pay for a select few medical expenses (such as respite care).

Dealing with Low Tone and Motor Delays

Kim R — Fri, 02 Apr 2010 02:38:27 +0000

Contact your State’s Early Intervention Program as soon as you bring your baby home from the NICU. These programs offer physical, occupational, and speech therapists (who can help with feeding problems) at little to no cost to you (depending on your ability to pay). These therapists will come to your home to treat your child, so you do not have to take your child out of the home for these appointments.
Early intervention will provide therapy services to your child until your child is old enough to access therapy services (for free) through your county school system.
Determine what therapy services your insurance company will cover and how long they are covered for. Most insurance companies limit therapy services, although you may be able to file for an extension of benefits due to medical necessity, particularly in cases involving congenital/birth defects. This extension of benefits is not widely advertised, and you may have to call the insurance company a few times to find someone who knows (or will admit) this is even an option. Check with your insurance company as soon as possible and ask for any information they provide in writing.
Consider your child’s therapy needs when shopping for an insurance policy. Also, depending on your child’s underlying medical condition(s), you might consider applying for SSI Disability and Medicaid to help cover your child’s therapy expenses.
Be aware that waiting lists can be quite long for physical, occupational, and speech therapists, particularly for those who accept insurance. Put your child on a waiting list as soon as you can. Be aware that it could be a year or longer before your child ever gets in to see the therapist.
Do not substitute Early Intervention services with therapy services covered by insurance. Use them both.
Ask your pediatrician, OB doctor or other parents for the names of therapists they would personally recommend. Sometimes your pediatrician can get you further up on the waiting list than you can on your own.
Ask your therapists for “homework” so you can work on low tone, oral, fine, and gross motor delays in between appointments. Be aware that while low tone and motor delays may not be the most pressing medical issue facing your child, they can have serious and long term implications. For example, your baby’s inability to suck on a bottle can delay her ability to eat, and eventually her ability to speak. The earlier you obtain treatment for these problems the better.
Find ways to make therapy homework fun for both of you. There is no reason why it can’t also be play time for you and your child.
As difficult as it may be, try not to measure your child’s progress based on the developmental milestones established for healthy children. Rest assured that your child will make progress in his own time and based on his own ability.
Depending on your child’s health issues and limitations, you might want to consider enrolling her in a children’s gym, gymnastics, or dance class to improve balance, coordination, and core strength. You can start at a very young age with “mommy and me” classes, which are offered by the county or local recreation centers.

Dealing with Immunosuppression

Kim R — Fri, 02 Apr 2010 02:38:00 +0000

Keep a supply of children’s and adult masks, urine collection containers, and prep towelettes/wipes in your home.
In the event your child has to go to the Emergency Room, call ahead. Tell them your child is immunosuppressed and cannot wait in the lobby. They will have an exam room waiting and should take you directly to it when you arrive. Put a mask on your child before entering the Emergency Room, particularly during cold and flu season. Try to potty your child and capture a urine sample (a clean catch to be on the safe side) at home, so you do not have to use the public bathroom in the Emergency Room.
If your pediatrician is part of a large practice, ask if you can have two or three pediatricians become familiar with your child’s file, and if you can regularly see one of those three pediatricians. This will help ensure that the physicians making medical decisions for your child are fully briefed on your child’s medical history, restrictions, and needs and can reduce the chance of medical errors.
Even if sick, an immunosuppressed child should never go into the “sick room” in the waiting area of the pediatrician’s office. When you call the nurse line to make an appointment explain your child is immunosuppressed and ask to have an exam room waiting for you. Do not wait in the lobby or waiting room. Put a mask on your child, particularly during cold and flu season.
Many pediatric floors in hospitals have a “clean floor” and a “dirty floor.” The clean floor is for children who undergo surgery and who are not contagious. The dirty floor is for children who are sick and contagious. Immunosuppressed children pose a dilemma when they are sick, because they should not be on the dirty floor or the clean floor. Should your child be admitted to the dirty floor, ask your nurse what precautions are going to be taken to protect your child from other illnesses. Ask for a private room. Also ask if the medical staff can glove, gown and mask up before entering your child’s room if they are going to be working with other potentially contagious children. Avoid taking your child to any play areas or in the hallway.
Immunosuppressed children generally require a lot of blood draws. Consider using Emla or LMX to numb those areas of your child’s arms where blood is taken a good 40 minutes in advance of any blood draw. You will need to cover the Emla/LMX with Tegaderm (or saran wrap in a pinch) to activate the numbing agent. Use the Emla/LMX liberally. These numbing agents will help minimize pain and suffering for your child.
If the phlebotomist you take your child is not good at getting blood from your child on the first try, then shop around until you find a phlebotomist who can. Be aware that hospitals have some of the best phlebotomists, who are generally available 24/7 to draw blood for outpatients. Also, some hospitals and ERs have a freeze spray that can be used to numb your child’s arm or hand right before a blood draw or IV.
Immunosuppressed children are exempt from school immunization requirements. All you need is a letter from your doctor.
Have your child’s physician write a letter for the school that specifies when and what illnesses you need to be alerted to, should another child become ill in your child’s class or if there is an outbreak in the school. This letter should establish a protocol for your child’s teacher and for the school nurse to protect your child.
You should also have a health plan on file with the school nurse that details your child’s medical issues, medications, and medical needs.
In the event that there are mass immunizations at your child’s school for the regular or H1N1 flu, ensure that your child is not in school that day or for 2-3 days following the immunizations. The majority of school age children are vaccinated with a live vaccine, which can shed and cause your immunosuppressed child to become sick with the virus.
Similarly, your entire family should get the “dead” vaccine for the flu, so you don’t risk getting your immunosuppressed child sick. Consider asking for the dead vaccine for any immunization you or your family members need. If a parent or sibling requires a live vaccine, try to make arrangements to have the vaccinated person stay at a friend’s house for a few days directly following the vaccination to protect your immunosuppressed child.
Do not trust the pediatrician to remember that your child cannot have live vaccines at well child visits when your child is getting vaccinations. Ask in advance of all well child visits whether a live vaccine is scheduled – not just for your immunosuppressed child but for any siblings as well.
Keep in mind that your child’s immunosuppressant drug levels can be affected by diet. Try to maintain some consistency in the food and liquids your child takes when he takes his medication. Alert your pediatrician or treating physician to any changes in diet.
Be aware that your immunosuppressed child will be sick a lot and she will miss a lot of school. This will be “normal” for you. Develop strategies for minimizing the cabin fever that results from being housebound during cold and flu season and carve out time to work on your child’s academic skills at home to help make up for the time being missed in school.
Your child quite likely has an Individualized Education Plan. When your child misses a lot of school, consider asking the pediatrician to write a request for homebound instruction, so you can request that your child’s school have a teacher and all physical, occupational, or speech therapists come to your home.

Dealing with In-home Dialysis

Kim R — Fri, 02 Apr 2010 02:37:28 +0000

Rest assured that your child’s kidney doctor (nephrologist) and dialysis nurse will provide you with extensive training before you begin dialysis at home. If at all possible, have two adults available for the training.
Find comfort in the fact that a dialysis nurse and/or nephrologist will be available to you 24/7, should any problems arise.
You will need to clear a large, clean storage space for dialysis equipment, which will be shipped to your home on a regular basis (sometimes once a month).
You will need to stock up on a large quantity of paper towels and soap dispensers, because you will need them to wash and dry your hands every time you connect and disconnect your child from dialysis.
Keep your face masks in the bathroom where you wash your hands and in your child’s bedroom. You don’t want to forget to put the mask on until after you wash your hands because you will have to do another full scrub after you put the mask on your face
Keep an egg timer in the bathroom to ensure you wash your hands and forearms for the full time required.
Consider investing in a microwave cart or some other small cart with wheels that will stand at crib/bed level for the dialysis machine and solution. Your child will be on dialysis for quite a few hours and the tubing that connects your child to the machine is very short. A rolling cart will allow you to move your child to other areas of your home if need be.
You will need to put a gate in your child’s doorway to ensure that no siblings or pets enter the room when you are connecting and disconnecting your child from dialysis. Only you and your child should be in the room when you connect and disconnect from the dialysis machine.
Even when your child is off the dialysis machine, keep tubing up and out of the way so that your children and pets do not mess with it.
Consider everything you will need in your child’s room so you can tend to or entertain your child while on dialysis, such as a rocking chair, books, toys, television, or DVD player. During the hours your child is awake you will need to keep him occupied so he doesn’t try to pull on or pull against the tubing.
Consider training a trusted friend or family member as a back up on dialysis, in part as a precaution in the event something happens to you and you become unavailable and in part so that you and your spouse can have some respite from dialysis or a date night. Make regular practice runs.
Consider making a video recording of the process of connecting and disconnecting your child from dialysis. Ensure the recording is marked and kept near the machine in the event that someone has to unexpectedly take over dialysis for you.
Keep a notebook by the dialysis machine to record the required numbers and ensure there is a list of important phone numbers at the machine for the dialysis nurse, the nephrologist on call (in the event the dialysis nurse does not answer her page), and the hospital. You should take this notebook with you for all appointments with the nephrologist.
Make sure there are multiple clamps located near the dialysis machine in the event the tubing or dialysis catheter break. You need to be able to quickly clamp off your child to reduce the risk of infection and clamp off the tubing to the machine. Be aware that you will have to take your child to the emergency room in the event this happens.
Moisturize your hands frequently. They will crack and bleed from all the hand washing that is required for dialysis.
Dialysis will seriously undermine your ability to get a full night of sleep. This will affect your stress level, your coping skills and the relationship you have with your spouse. Establish a plan in advance with your spouse, so you both know who has to get up when the alarm on the dialysis machine goes off in the middle of the night (as it frequently does). Will you alternate nights where you are responsible for the alarms or will you take turns with each alarm each night?

Accessing Medical Records

Kim R — Fri, 02 Apr 2010 02:36:55 +0000

You have the right to request your child’s medical records for your own use.
Make your request for medical records far in advance of any meeting or appointment where you might need them. It can take weeks, if not months for a facility to process a request.
Submit your request in writing, and save a copy of your request. Typically you need to include the patient’s full name, date of birth, social security number and dates of service along with a very specific list of the types of documents you want copied and the reason for requesting the copies. Note that requirements may vary from provider to provider. Check with the medical provider in advance of mailing the request to ensure you have met all their requirements. Failure to do so could result in significant delays.
Don’t think for a minute you can walk into a medical office or medical records department and request copies of your child’s medical records on the spot. You have better chances of winning the lottery.
Be aware that you will quite likely pay a very large fee for copying medical records. While you aren’t likely to notice it at the time, given all the documents you have to fill out, most medical providers make you sign an agreement to pay these fees at your very first medical appointment. This fee can cost you over $1.00 for each copied page, in addition to postage, shipping, and delivery fees.
Doctor’s offices often contract out with private companies to fulfill requests for medical records. You will have to pay those companies directly, and they will quickly turn you over to collections if you don’t.
Be aware that different rules may apply depending on who needs the medical records and the type of insurance you have. Your physician may be required to provide copies of your child’s medical records free to other physicians. So, if you have a new physician or specialist request copies themselves, you may be able to avoid the fees that you would incur if you personally requested the records to take to the medical appointment with you. It is unlikely you can avoid copying fees if you want copies of your child’s medical records for an attorney or for your own use.
Think ahead. Ask your child’s nurses for copies of blood work or test results during your doctor’s appointments and hospital stays and collect them as you go. Odds are high that you won’t have to pay for these copies, and you will then have these documents available to you (should you need them at a later date) to make copies yourself at a local copy shop for pennies on the dollar.
Consider keeping copies of recent medical records (including blood work) in a binder that you can take with you to medical appointments, the hospital, or emergency room. You don’t want to remember something incorrectly in a stress-filled emergency situation, and you would be surprised at how often doctor’s offices misplace documents. If your child has a complex medical history, his files (note the plural) are likely quite large, particularly at the local hospital and at your pediatrician’s office.
Keep in mind that there are some medical records that your provider is not required to release to you, such as notes or minutes from a surgical or medical peer review committee. These types of records may be considered confidential and may not be subject to court subpoena or other discovery rules. Consult with an attorney for additional guidance in this area.

Managing Your Child’s Health Care Needs

Kim R — Fri, 02 Apr 2010 02:34:38 +0000

Keep in mind that you are your child’s best advocate. Don’t be afraid to question your child’s medical providers or seek second or third opinions when you feel conflicted about the medical advice you are receiving.
Keep in mind that medicine is not an exact science. It is a “practice,” which requires a series of educated guesses, trial and errors. The medical staff, while clearly experts in their respective fields, are only human and can make mistakes.
Establish a respectful relationship with your child’s doctors and nurses. Respect leads to better communication and quality care, which is in the best interest of your child.
Purchase a fax, copier, and scanner so you can have lab slips, referrals, and other medical information faxed to your home and so you can fax insurance and payment information to medical providers and your insurance company.
Take a notebook with you and keep notes (as best you can) at medical appointments.
Keep a Daytimer/appointment book to record all your child’s medical appointments and the names and contact information for all medical providers. Keep the book open in a convenient place (on a desk, counter or dresser) and make it a priority to review the schedule for each day the night before. Keep copies of referrals and other important medical information in this book. Take the appointment book with you to medical appointments.
Establish a single page medication chart for your child that can be posted to your refrigerator and placed in a wallet and/or purse so it is easily accessible to you. The medication chart should include the name of each medication your child is taking, the approximate time it is given (morning, afternoon, or evening), dosing (including milliliters and milligrams per milliliter), the purpose for the medication, and any special instructions. Include a list of all medicines your child is allergic to or prohibited from taking. Also include contact information for important medical providers (to include in-office and after hour phone numbers). Note any requirements that warrant calls to medical providers or emergency room care, (such as specific temperature or blood pressure readings). Be sure all adults in your house are familiar with this chart.
Establish a routine for administering medication and stick to it. This will help you avoid any confusion about who is supposed to administer morning, afternoon, and evening medications. It is equally important to maintain good communication with your spouse or in-home nurses to ensure there is no duplication or missed medications. Consider maintaining a checklist where each medicine is checked off as it is administered in the beginning, until the routine is firmly established.
Try to request copies of test results or other important medical records at each appointment. Keep yearly files for research, medical information, medical bills, insurance statements, explanation of benefits, and flexible spending statements.
Be aware that it can take six months or longer to get your child in to see a specialist as a new patient. Ask your pediatrician to help you secure an appointment whenever she refers your child to a new specialist.
Talk to and prepare your child for upcoming medical procedures, even if you think he may be too young or unable to understand. You don’t want your child feeling blindsided.
Consider purchasing a child’s doctor kit and a doll that will help you explain surgeries or medical procedures to your child. You can purchase dolls that are made to look like your child and which can include hospital masks and gowns and medical equipment (such as g-tubes or dialysis catheters).
Try to schedule pleasant activities directly following any unpleasant activities, such as hospitalizations, emergency room visits, shots and blood draws. This will give you and your child something pleasant to talk about and look forward to. Try to give your child a voice in what these pleasant activities will be.
Try to give your child a voice and some control in his medical care. For example, allow your child an opportunity to answer questions from medical providers before you do. Allowing your child to administer his own medications (with your supervision) may help reduce power struggles and control issues.
Try to piggyback medical appointments so you have less outings.
If your child has frequent blood draws or a medical condition that can require STAT blood draws, ask your child’s pediatrician or medical specialist for a standing order.
Consider ordering your child’s medications through mail order programs. It can save you money and time at the pharmacy. Put any medications at your local pharmacy on “auto-refill.”
Ensure there are other people in your life who know how to care for your child in the event something happens to you and for respite purposes.
If you travel out of state or out of the country for business or vacation and have to leave your child in the care of a family member or friend for an extended period of time, consider drafting an Authorization for Temporary Guardianship of Minor or Parental Medical Consent Form to ensure your child receives any needed medical treatment in your absence. This is equally important for healthy siblings. Also consider writing an “instruction manual” with detailed information about how to care for your child.
If you don’t already have one, have a will drafted that will provide a guardian and establish a trust to care for your child in the event of your death.
As difficult as it is, you need to take time to take care of yourself. You need to maintain your own health and well being in order to effectively manage your child’s care.

Surviving The NICU

Kim R — Fri, 02 Apr 2010 02:32:09 +0000

Know that you are your child’s best advocate and only voice.
Keep in mind that medicine is not an exact science. It is a “practice,” which requires a series of educated guesses, trial and errors. The medical staff, while clearly experts in their respective fields, are only human and can make mistakes.
Establish a respectful relationship with your child’s doctors and nurses. Respect leads to better communication and quality care, which is in the best interest of your child.
Keep a notebook and pen with you, write down your questions and take notes. Maintain a daily journal to record progress on medical conditions, medications, treatment, and blood work. Not only will this help you remember important information and recognize progress, but it will have a positive effect on the way the medical staff treat you and your child.
Ask for guidance on how to read and understand your child’s monitor and any other equipment around your child’s bedside. It will help reduce your stress if you understand what the alarms mean.
Don’t be afraid to ask questions and to ask physicians and nurses to explain and/or spell medical jargon.
Don’t be afraid to ask for second and third medical opinions on difficult matters.
Know that you are entitled to personally examine and review your child’s medical chart.
Consider using carepages.com to keep family members up to date. It is less time consuming than calling everyone, and it can be difficult to use your cell phone in the NICU. Also consider having a close friend or family member keep the site updated for you.
Consider asking a trusted friend to conduct medical research for you, if you are not able to do so yourself. Your hospital should have a medical library and medical librarian. Google with caution. While the Internet can be helpful, don’t believe everything you read on the Internet and be aware that a limited amount of information can be a dangerous thing.
Talk to your insurance company to ensure the facility AND neonatologist AND specialists are in network. Be aware that in some cases a facility may be in network, but a medical specialist practicing in that facility may not. Confirm your deductible and any patient co-pay/financial responsibility.
Most medical updates are given at your child’s bedside. If a private group meeting is called by the neonatologist or medical specialists away from your child’s bedside, then ask for a trusted friend, family member or minister to attend this meeting with you. These meetings are often called to deliver difficult news and may require life and death decisions to be made. A spiritual counselor or friend can help you understand and digest the information. They can also serve as another set of ears to help you remember what was said as you sort through things later.
Ask for time to make difficult decisions if you feel you need it. However, be sure to ask if any harm can occur if a decision is delayed a few hours or a few days.
Ask a neighbor, friend, family or church family member to take care of any siblings, your home, pets or other issues, so you can maintain your presence at the NICU.
If problems arise with medical staff or you have concerns about how your child is being treated, then ask to speak with a nurse manager, patient advocate, or ombudsman. The patient advocate or ombudsman may also be able to help you work through insurance problems.
The NICU is noisy given the sheer volume of alarms, machines, patients and parents. Consider asking Child Life to bring a music mobile or CD player to play lullabies and to help build a more comforting, home-like environment for your baby.
Personalize your child’s environment. Ask if you can bring a blanket or cap, or booties from home. Also, taping family photos to the isolette personalizes and distinguishes your child from the other infants being treated. It also maintains a connection to family for those medical professionals who care for your child while you are away from the NICU.
NICU staff are going to be focused on the most pressing and most life threatening issues affecting your baby. They may not be focused on pain management. Ask if your child is in pain and what can be done to minimize pain and suffering. Find out who is in charge of pain management.
Consider asking for a numbing agent such as Emla or LMX before (approx. 30-45 minutes before) IV’s or arterial lines are inserted or before blood draws. Also, some hospitals have a freeze spray they can use to numb your child’s arm or hand right before a blood draw or IV.
You may not be allowed to hold your child if he/she is on a ventilator or has an arterial line. Ask if you can still touch your child. Be aware that too much stimulation may be painful or upsetting to your child, so simply resting your hand above her head and at the base of her feet may bring more comfort than caressing her.
Read and talk to your child. Let him know you are there. Your presence and your love will give him something to fight and live for and it helps build the bond you both need.
Ask your nurses how you can help care for your child. You may soon be able to change diapers, take a temperature, help with tube feedings and medications, bathe, and swaddle your child.
Don’t be afraid to ask for what you want multiple times. If you want to hold your child and the answer is no, the answer may become yes in a day or two, or after the next nurse shift change or when a different nurse is involved with your child’s care. Older, more experienced nurses are far more likely to grant this request. Their experience makes them more comfortable with these types of situations.
Get to know your nurses. You will find the neonatologists and other medical specialists have limited information and interact with your child less than the nurses do. Nurses often have the “big picture” and have a broader range of information about your child. Also, nurses work on the front lines and are often the ones who “save” children’s lives during times of crisis. Also, if your child is in the hospital for extended periods of time, getting to know your nurses and being pleasant with them will motivate them to request your child for subsequent shifts. This gives you and your child some continuity and improves the care and attention your child receives.
Consider writing a note of thanks or write a personal note about exceptional patient care, which can be included in an employee file. Participate in any surveys so the hospital can identify areas for improving care.
Be sure to take time to eat and rest. Parents cannot be in the NICU during a nurse shift change, so use this time to take care of yourself. If you become worn down and sick, you will not be allowed in the NICU. Your health is very important.
If you don’t live close to the hospital, inquire as to whether there are any sleeping rooms in the hospital or a Ronald McDonald House near the hospital where you can stay.
If you belong to a church, keep your priest, pastor, or rabbi informed. Ask for your child to be placed on any available prayer lists. If you do not belong to a church community and want spiritual counseling or support, the hospital will have chaplains available to you.