Discharge Day is Coming
Discharge. Going home. Finally!
When these words start to float around towards the end of a hospital stay, you might be flooded with a complicated mix of emotions. There’s relief – finally, after living in the hospital for their entire life, your baby (and you!) will get to experience the comforts of home. No more middle-of-the-night vitals to check or days that feel entirely out of your control. But there are also no more healthcare providers within a few paces to check on things, no more monitors queuing each minor change, and that can be scary to come to terms with. Then, last but certainly not least, comes the feeling of overwhelmedness – how do I manage the transition home with a medically complex baby?
You can do this! Believe it or not, weeks or even months in the hospital have prepared you for bringing your child home. Between the explicit education from your medical team and the implicit learning you have done just watching and absorbing what they do, you have learned a ton! And you have what no one else does: the instinct and unshakeable bond with your child. You can do this!
There are four main areas to take into consideration as you plan to go home, and here are some tips for each. It is important to keep in mind that discharging from such an extensive hospital stay is a process. As you navigate the below, remember to take your time, give yourself some grace, and ask all of the questions you need to ask of your team to make yourself comfortable.
Follow-Up Care:
There are many things to organize as you prepare to leave the hospital, but it is absolutely doable with some organization and preparation. To help keep all of it straight, one thing to try is to get a fresh notebook and on the top of each page, write down one task. Only look at one page each day, figure out what you need to do to accomplish that task, and use that page to take notes. Consider asking your healthcare team for a notebook – there is a good chance they will have some they can give you! If you’re more of a technology person, you could organize a document in a very similar fashion. This is a list of common follow-up care items for CDH babies to help you get organized. It may not be comprehensive, so add tasks that you have discussed with your healthcare team as well.
Pediatrician: This person will be the nucleus of all of your care when you come home, so having someone you trust is important. They will also be facilitating many of the steps that follow and will most likely want to see your baby within a few days to a week of coming home. Keep in mind that they may not have other CDH experience. If that is the case (and even if it isn’t), you may want to ask them about their willingness to communicate with your hospital team for CDH specific issues that might pop up. Some parents need to search for other pediatricians who have CDH experience or pediatricians who are more willing to listen to their child’s hospital team.
Medical Supply Providers: Your hospital team will likely initiate your contracts with these companies, but it will be up to you to follow up to ensure ongoing deliveries or any continuing education you might need. For most CDH babies, that will mean relationships with one or both of the below types of supply providers (also known as a DME, an abbreviation for durable medical equipment):
Feeding Supplies, if your child is coming home with a feeding pump.
Oxygen Supplies, if your child is coming home on oxygen support.
Pulmonologists: This will likely be established through your pediatrician, but it is important to make sure this gets set up and any referral process running, especially because establishing care with specialists can take longer than with primary care providers. If your child is going home on oxygen and/or will need Synergis after discharge, establish this relationship early. Ask your pediatrician the best way to facilitate this care.
Gastroenterologist: As with the pulmonologists, this will also likely be set up through your pediatrician’s referral if your child is coming home with a feeding tube. Even those without a feeding tube are recommended to establish with a pediatric GI to keep an eye on your child’s intestines - due to the anatomy changes CDH brings to the table, CDH kids are more susceptible to bowel obstruction or malrotation.
Cardiologist: Not all CDH babies need a cardiologist as well, but if yours does, this is another important specialist to establish care with as soon as possible.
Prescriptions: If your child is coming home on prescription medication, those meds will most likely be available through your local pharmacy. However, some less commonly used medications may only be available through specialty pharmacies. Be sure to clarify where your prescriptions will be coming from prior to discharge and establish those fills and refills early in the process.
Therapies: Physical, occupational, and speech therapies each require referrals from your pediatrician, but it will be beneficial to establish this early as well. Typically your local children’s hospital will have a standard protocol to be set up with all three evaluations shortly after discharge if that is what your child needs. There are also many government programs to assist with this (more details below).
Health Management at Home:
As you transition to caring for your baby full-time at home without hospital support, we recommend, as with everything else, writing down your home regimen. For example, many parents recommend writing down each step in the process as you are learning how to administer medications through your baby’s g-tube, then you can ask a nurse to proofread it so you can feel confident in your ability to do it seamlessly at home. Be sure to write down times and dosages for medications on a schedule and keep it where you will have consistent and easy access to it. Many families use a series of alarms on a cell phone, a written planner, a Google Calendar with alerts, or a displayed schedule on a whiteboard or refrigerator at home. Trust that your baby will thrive at home under your care, and remember that your healthcare providers are only a phone call away.
Financial Considerations:
Bills can rack up with a medically complex child in the mix, but aside from your insurance, there are other resources that can be hugely helpful in lessening some of the burden. Be sure to check if your state has a Medicaid waiver for children with special needs. Most states do, and any child requiring long-term care will likely qualify, but each state will have different processes and requirements for applying for services. With this waiver, Medicaid does not go by the parents’ income for eligibility purposes and would act as secondary insurance to whatever insurance your family has currently. Medicaid will pick up whatever your primary insurance doesn’t cover and can potentially save you thousands of dollars very quickly.
As with Medicaid, each state has its own version of an early intervention program that will provide free or discounted physical, occupational, and speech therapy services. These services can take a while to set up but can be huge difference makers when it comes to your child’s motor and intellectual development. Ask your pediatrician for an early referral and refer to the CDC’s website for more details for each state. This often takes some time to get set up, so don’t wait to get the process started. You can often times set up the intake appointment long before you are discharged, so the appointment can happen shortly after you get home.
Self-Care Considerations
Many parents experience mental health struggles when bringing home a perfectly healthy new baby, and you have been through much more. Whatever it means to you to take care of yourself, please take the time to establish those things as well, be that establishing care with a counselor or therapist in person or online, a regular visit to your favorite massage parlor, stocking up on the breastfeeding or pumping supplies that make you feel comfortable and pampered, or setting up a grocery delivery service to your home.
Most importantly, be patient with yourself and give yourself grace. Nobody will tell you that taking care of a new baby is easy, especially a Tiny Hero, but yours is worth it. And remember, you’re not alone!
