What I’ve Learned Over Five Years at Five Different Hospitals

7 Jul

Before I had my precious, high-maintenance children, I lived in a world that only had adult hospitals. We’re talking elbow surgery, bringing babies into the world or the occasional heart attack. Children’s hospitals only existed in commercials in other states where the sick children lived. You know, away from here.

Now that I’ve spent the last five years going in and out of children’s hospitals, I know there is this whole other world that exists. A world of bravery through pain, laughter under Mickey Mouse masks, playing cars with chemo and singing clown doctors. Bright-colored walls and red wagons, visting pets and holiday scrubs.

From the age of 13 months to 28 months, Jackson had a combined stay of 100 days inpatient at various hospitals through his treatment, which included Children’s Hospital of the King’s Daughters (Norfolk, VA), Memorial Sloan Kettering Cancer Center (NYC) and New York Presbyterian Hospital (NYC). CHKD served as our home hospital and we mostly stayed on the eighth floor hematology/oncology unit. Some parts of Jackson’s treatment, like immunotherapy, necessitated very close monitoring only available in the PICU (Pediatric Intensive Care Unit). Radiation, which requires young children to be sedated to remain still, was an outpatient experience.

Abby’s hospital stay, though longer, was completely in the NICU. She spent 104 days growing from a one-pounder to a more substantial five pounds and two ounces at discharge. The neonatologists oversaw her care, but coordinated with in-house specialists for issues as they arose (like laser eye surgery for retinopathy of prematurity, adrenal insufficiency and neurosurgery for her hydrocephalus). Once she was home and her hydrocephalus became acute, we traveled to Children’s Hospital Boston where she stayed on the neurosurgery floor while she recovered from the ETV/CPC surgery.

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Me and Abby at CHB following her neurosurgery appt

So, all in all, I’d guess you’d say I sort of know what it’s like to stay in a hospital.

My back, neck and heart hope none of you ever have a child that requires a hospital stay. But if we’re being realistic, some of your children will. Kids break arms; they have asthma attacks or get stomach viruses that require an overnight stay with fluids. Sometimes there are things that happen that are worse, like an emergency appendectomy or a bad car accident. Sometimes…they even get cancer.

I decided to put together a preliminary list of things I learned from my varied experience. I have all this knowledge that I need to impart on someone! I hope you find it helpful if you’re facing an upcoming hospital stay with your little one, or if one happens when you least expect it.

  1. Take it one step at a time. Sometimes your situation can seem so tense or uncertain that you can barely see straight for all the worry. Take a deep breath. What’s gone well today? What’s your goal for the day? Focus on things you can control. Take it day by day, hour by hour or minute by minute, if necessary. I always spend more time worrying about what the future will hold than actually living that future once it’s here.
  2. You are your child’s number one advocate. Moms and Dads, you know your child better than anyone in the world. You can often recognize a problem in the early stages. You know whether he/she has a bad reaction to that medication, or if he/she does better with that treatment if it’s given over four hours versus the suggested two. Don’t EVER, EVER be afraid to speak up when it comes to your child’s health and what you feel in your gut.
  3. Take notes. It’s really hard to remember everything, especially when you’re going through something traumatic like a hospital stay. Keep a note pad to write down your questions or keep a list in your phone. That way when the doctor comes in unexpectedly, you can get all your answers at one time. Some doctors got to know me so well, they’d just come in and take the questions out of my hand to start answering. Our hem/onc nurse would know to alert new specialists that “mom likes to ask questions.” Notes, people!
  4. Make friends with your nurses. I could speak forever on this topic. Nurses are your lifeline. They are the heart and soul of the operation. There’s nothing like watching a good nurse in action. She will teach you to do things on your own, she’ll hug you when you cry and she’ll let the doctors know when she thinks they’re wrong. Plus, your nurse won’t hesitate to become gatekeeper for peace and quiet, visitors and sleep. If you are expecting a long stay and have fallen in love with a nurse, ask her to go steady with you. Primary nurses provide unparalleled institutional knowledge. If for some reason you and your nurse don’t work out well together (and that’s only happened twice in my five years and five hospitals), you can speak to the Charge Nurse to explain why and request to not have her anymore. Remember, you are your child’s number one advocate, even when it’s awkward.

    Make friends with your nurses so they'll give you extra kangaroo care time!

    Make friends with your nurses so they’ll give you extra kangaroo care time!

  5. Ask about every medication your child gets before they get it. Humans make mistakes and even the very best medical professionals have an off day. I’m not going to lie; this personal policy came after a medical error happened with Jackson. It was something that ended up not being a big deal in terms of his health, but it really scared me. Ev and I requested to not use that nurse anymore. Since then, I’ve caught a handful of other medical errors with my kids and so I repeat, double check. Ask the dosage. Ask why it’s being given if you don’t know. Ask if it’s been checked by a second nurse to verify the right dosage. It may slow the process down just a bit, but it may mean more than that if you catch an error.
  6. Two strikes and you’re out. In essence, you have two shots at getting an IV in my kiddo before we switch to a new person. Jackson had one clinician go through both hands and feet trying to get an IV in. It just wasn’t her day. But you know what? It wasn’t his either, especially once he was sweaty and sobbing being held down by three people. Nope. Two strikes and you’re out. It’s a good rule for everyone. For really tough sticks, the hospital has a VAT team of specialists that can stick even the smallest of babies. They are really talented.
  7. See if you can sit in when the doctor “rounds” on your child. Every hospital has a different policy, so you’ll have to ask your nurse about the possibility of sitting in while your child’s case is discussed. This is what they call “rounds,” in case you didn’t know. If you’ve made friends with your nurse already, you’ll have the inside scoop.
  8. Ask if you can go. Scans, surgery, IV sticks, elevator rides…whatever it is, your child will feel better if you’re right there with them. For Jackson’s major surgery at Sloan Kettering, I suited up in a surgical bunny suit and walked him into surgery. I held him as the anesthesiologist knocked him out, and I prayed for everyone in that room as I walked out. It was a blessing for him and for me to ease that transition without having a scary “time to leave mommy” moment. With Abby, I literally rode flat on my belly into the MRI machine with her, held her pacifier in, sang to her and patted her while she had a 45-minute scan of her brain.  Ask if you can go…what’s the worst they can say? No?
  9. Take a break. Even if it’s just to go downstairs to get a quick coffee, you need time to see the sun and to think clearly. Being in the hospital with your little one is probably the most exhausting experience I’ve ever had because you are ALWAYS on. Take a few moments for yourself. If you can come back feeling recharged, then you’ll have more patience and compassion when your sweet child “accidentally” hits the nurse call button for the 700th time.
  10. Throw out all your normal TV/computer rules. I remember one doctor in New York who called television “the great anesthetic.” A doctor with a dry wit…what are the odds? So, take his advice like it’s a prescription and watch movies, browse online, play video games, use the iPad…whatever passes the time and keeps your child happy and occupied. It’s really OK. No permanent damage done, I promise.
  11. Try to keep to your schedule. I know my kids felt more comfortable with a routine, whether it was keeping to Abby’s every three hour nursing sessions or making sure we scheduled Jackson’s Benadryl around afternoon naptime. It really helps because you won’t always be in the hospital and you’ll need to transition home.
  12. Ask to meet with childlife. Chances are, they’ll come to you first. Childlife specialists take care of your child’s need for fun. They have movies, toys, coloring books, play ideas for bedridden patients and can secure a clean, empty playroom for a child that needs to be in isolation.
  13. There’s always someone to talk to. Social workers are assigned to each department, and can help lend an ear at anytime. It can just be someone to be there for support during test results or a major help in dealing with a delicate issue with your child. Social workers also have a list of resources for financial aid, which is sometimes one of the biggest burdens of a sick child. Did I mention yet that my sister is a social worker at our local children’s hospital?
  14. Have a game plan for pain, before the pain hits. This requires a conversation with the doctor before any procedures start, so you can have prescriptions written (and filled if heading home) well in advance. It’s OK to give pain medicine when you’re child is in pain! Throw out the conventional medication thought process during a hospital stay and pay close attention for your child’s cues.
  15. Bring things in from home. Don’t forget to pack favorite blankies, pacificers, stuffed animals and plenty of backups. With Abby, she had a favorite glow worm that played music, and with Jackson, we actually brought the glider in from his home nursery! Most hospitals have a washer and dryer on site, and you’ll probably find yourself using it often if your child’s favorite blanket hits the floor. If it hits the floor – wash it!

If you can add to this list, feel free. I’d love to hear your input on the things that helped your family survive hospital stays.

6 thoughts on “What I’ve Learned Over Five Years at Five Different Hospitals

  1. Oh, Jessica. I hardly got through the first 20 seconds of the video of Jackson running after the cars before I started balling my eyes out. It reminds me of my little angel cousin, John, and his treatments. I’m so glad that you started this blog. I think the world needs constant reminders of how much work still needs to be done in pediatric cancer research. Thank you and you are amazing.

    • Thanks Jo Lynne! That video brings back lots of memories for me too – I’m sure there was a lot that was similar between John’s treatment and Jackson’s. It’s really terrible that kids have to go through any of this. Hope you’re doing well – it’s been a long time!

  2. Wonderful, wonderful advice. Not that you need something else to occupy your time, but have you thought about writing a book on this vitally important topic? You exhibit an amazingly clear and creative perspective.

    • I appreciate the compliments. I’ve always thought about writing a book, but I really have no idea how to start. I have so much experience and giving support to other families, in hopes that it eases their way even just a little, is what I find I’m most passionate about. Thanks Howard!

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