Surviving extended hospital stays
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Care Issues
- Some hospitals may have a "continuity of Nursing Care" list or similar in which you can request preferred nursing staff while inpatient.
- Feel free to request that nurses follow your practicies of line care, ostomy care, etc. Most are very receptive to do care in a way that you are comfortable with. Some parents have found it helpful to post instructions and expectation at bedside.
- If you are in a double room, you can ask if there is a single available or request that you be moved into a single once one opens up.
- Care issues can be a problem. If the nursing care isn't satisfactory, speak up and ask to talk to the charge nurse. You can also request to do your child's line care, meds, etc. yourself (might have to bump up your request to a nursing supervisor or patient advocate).
- You typically aren't able to use your home equipment or TPN once your are officially admitted to the hospital. If you are admitted too late in the day, TPN might be d/c and not reordered until the next day. If this is a problem for your child, consider requesting to spend the night in the ER, where you are typically allowed to use your home equipment and TPN.
- A friendly reminder for medical staff and visitors to wash. We have a sign with a smiling photograph of Austin that states, "Help keep me smiling! Please wash your hands and sanitize equipment prior to contact." It really helps.
- Request that staff always wash their hands. Alcohol based hand sanitizer is not effective in killing C-Diff.
- To help prevent your child from picking up new illnesses, you can ask that your child have their own personal thermometer, blood pressure cuff and stethoscope for staff to use. If nurses and doctors insist on using their own, request that they wash down their equipment prior to using it on your child.
- Don't try to be a super parent and be with your child 100% of the time (even though you want to). Give yourself a break to sleep outside of the hospital and accept offers from others for help.
- Use care pages [http//:www.carepages.com] or similar to provide updates and keep in touch with families and friends.
What to Bring
- A memory foam mattress topper or an egg-crate foam mattress can make the chair-bed much more comfortable.
- The velco straps you can buy for keeping cords organized are very helpful for hanging toys from the crip railing and for keeping tubing attached to the stoller, etc.
- The XXL zip lock bags are handy for storing items from home.
- Keep Purell at bedside.
- Leaving your baby in the NICU (most don't allow you to spend the night) can be really hard. We made a recording of ourselves reading our favorite stories on a mini recorder. The nurses played the tape to Austin when we weren't there. They said it really helped calm him.
- Have baby/child friendly music to play.
- Bring in toys, clothes, blankets, wash cloths, etc. from home to use with your child. It makes it feel a bit less like the hospital. Clothes with snaps down the front are easiest.
- A universal remote allows you to change the TV channels without being tied to the corded TV remote.
- A pillow and blanket from home.
- Ear plugs.
- Alarm clock.
- Toys that can be easily sanitized if they fall on the floor.
- Tylenol PM allowed me to get a few extra hours of sleep.
- Bring a camera and take pictures.
- small flashlight, so late-night vitals are less likely to awaken child.
