Home Health Nursing

When my husband an I found out that our daughter, Elizabeth, had this horrible disease one of the biggest issues we had to tackle was how to care for her once we were discharged from the hospital. Our first thought was that I would quit my job and stay home to care for Elizabeth. Neither of us was particularly happy about it. I like my job, I have the better insurance plan through my job, and the idea of caring for Elizabeth all day by myself with all of her needs was terrifying and overwhelming. Thankfully we had a terrific support system at the hospital and a GI doctor who has treated MMIHS patients before and had an idea of what sort of home support we would need. Both of these teams recommended that we look into a home health care company.

A week or so before discharge the care coordinator at the hospital came to us and said she had found a company that was covered by my insurance and asked if we would be interested in meeting with them. They came to the hospital to meet with us and explain how their company worked. They have a mix of LVNs and RNs who work for them. The company is responsible for doing background checks on employees and ensuring that they are certified to perform the duties that Elizabeth requires. Any scheduling requests or issues we have with nurses go through the company. The company sends out a schedule at the beginning of each month that lists all the filled shifts. They fill in any gaps in the schedule as the month progresses. If a nurse needs vacation or calls in sick, the company is responsible for finding a replacement for those day. This takes a tremendous burden off of us.

When we first met with the company our insurance had not approved the amount of nursing hours that our doctor had prescribed. The company agreed to take us on for one month at the number of weekly hours or doctor prescribed without the insurance approval and eat the cost of any unapproved hours. We do 7a-7p/7 days a week. On weekdays I have a few minutes in the morning to talk to the nurse before I take out older son to school. We get home around 5:30 most days. We use that hour and a half or so to get homework done and make sure everybody is fed before the nurse has to leave. On weekends we use the time to recharge and do things around the house that don't get done during the week. Because caring for Elizabeth demands so much time during the week, once or twice per month we take our older son out for something fun on the weekend. Our nursing company takes care of all of the insurance and medicaid billing which is another headache we don't have to worry about. Overall we've been happy with the company but if we had to do it over again there are some things I'd do differently.

At the hospital I would have asked to meet with at least one other company. We were still overwhelmed at that point and just happy that anyone could help us I never thought to ask to speak with another company. Even if we'd had the chance, I wouldn't have known what questions to ask. While we were told that our nursing company had several nurses who were qualified to work the central lines and TPN we soon found out that wasn't exactly the case. I would know to ask how many "TPN" nurses they had on staff. I would also find out what their policy is in regards to having nurses connect and disconnect TPN and IV medications. Every company and state has different regulations. Our company does not allow nurses to set up or connect TPN without direct supervision. This has caused some issues in the past.

Our experience has been that most pediatric home health care nurses have never worked with central lines outside of a hospital. Most of them are used to working with tracheotomy and respiratory patients. Be prepared to do a lot of in-home training. Nurses at the hospital will teach you how best to care for your child at home and you will be responsible for passing that knowledge on to your nurses. A good nurse is flexible and willing to do things the way that you request as long as it does not compromise the health of your child.

I've lost count of the nurses we've had through our home. Some were not a good fit personality wise, some were not able to care for Elizabeth properly, some we had communication issues with, and some just weren't interested in the job. You should be prepared to have a few nurses in before you find some who work best for you and your family.

Many pediatric home health nurses are used to working with patients who confined to bed or have other physical limitations. MMIHS kids have lousy guts but in most other respects they are typically busy kids. Some nurses are not interested in or able to care for an active child. We've had nurses who were physically unable to carry Elizabeth up and down stairs, who couldn't get in the floor to play with her or bend over to pick her up off the floor, and who couldn't pick her up because of shoulder or back injuries. These are abilities you need to make sure that your nursing company understands.

• Provide written information for the staff including:
  • A list of expectations so that the standards are clear and you can eliminate confusion.
  • Explains the diagnosis
  • Daily schedule
  • Description of the child’s personality
  • Line care instructions
  • Tips about the child’s mobility and cautions about potential dangers in the house (like stairs) when applicable.

• Remember: You and your child is the client, you have the right to reject any nurse for any reason.
• A good company will work with you to figure out what you need and want in a nurse.
• Have 1-3 “core” nurses and several who are good for filling in weekends and days when the “core” nurses are sick or on vacation.
• New nurse orientation is helpful, one family does a minimum of a 4 hour orientation where the new nurse comes with one of the regular nurses.
• Spend a day one-on-one with a new nurse if you can to observe and answer questions.
• It’s better to ask than to assume so be open to nurses calling or texting if needed.