Keep a hospital bag ready to go; don’t wait for an emergency to pack a bag. I have done that before and when I got to the hospital, I had a bunch of random stuff in the bag. I ended up having to use the strap for my heart rate monitor as a hair tie.
Have a plan: Who is going to take care of your other kids? Are you going to stay at the hospital with your child every night or is there someone else who can give you a break?
Make a list of things you can grab before leaving the house, such as a phone charger, cash, and other things that you don’t store in the hospital bag.
DURING THE HOSPITAL VISIT:
Respect the nurses.
Sometimes parents get confused and think the nurses at the hospital are there to take care of the parents. No, they are supposed to be taking care of your child. Don’t complain to them about the wait time, the food, insurance company and anything else that has nothing to do with the direct care your child is getting at the present moment.
I have a lot of bad memories of my daughter being in PICU, but I laugh when I think about some of the nurses. I will never forget the nurse who let me sneak out late one night just so I could buy a box of Peppermint Joe Joes.
Don’t make major decisions.
The following things are some of the things I have thought about doing or have done while my daughter was hospitalized:
- Cutting my long hair super short
- Converting to Judaism
- Moving to another state
- De-friending all of my in-laws
- Picking out a name for my unborn daughter …
A lot of things can be undone, but just to be on the safe side, wait until you are out of the hospital.
Keep yourself busy during the day.
Welcome visitors, but set limits. Know when you are too tired and need down time. Try to get out of the hospital one hour a day. This is hard to do, but it’s important to step away and have an hour outside the jail… I mean, hospital.
Instead of sitting in a chair, watching TV and eating junk, try to go outside and get some fresh air. Yes, you are there for your child, but remember: you have to stay mentally and physically strong in order to be a good caregiver.
Have a routine.
The hospital has its own schedule: the lab people coming around to annoy you at the crack of dawn, the nurses changing shifts, the important specialist walking around asking if you want them to check your kid out (and then billing the insurance company $$$ just so you can hear them say, “Follow-up with her regular doctor when you leave”), the food trays being brought to the rooms… you get the picture.
Here is my routine:
- Open my eyes, make sure I am wearing pants and start searching for a cup of coffee
- Breakfast for my daughter (if she can eat)
- Eat my own breakfast, drink more coffee, call and check on my other daughter
- Call my husband and remind him of what a sacrifice it is to sleep on the bed/couch thing
- Figure out who is coming to stay for an hour so I can sneak out
- Read, visitors, lunch, workout, shower, more visitors, dinner, TV, read, get my daughter ready for night time, get myself ready for bed, read
- Call my husband and remind him what a sacrifice it is to be sleeping on the bed/sofa thing
- Ear plugs, melatonin, eye mask, sleep until the lab people come and wake us up
AFTER THE HOSPITAL VISIT:
It’s important to rest and get used to your new normal before getting back into a busy schedule. In the hospital, we are so worried about our child that we don’t have the time to properly process what is going on.
The way we handle extreme stress is different for every person. My husband loses his cool during an emergency, but once it’s over, he does not think about it anymore. I stay calm during the storm, and insist on staying in the trauma room when they are working on my daughter. When we get home, it’s a different story. Once I have the chance to process what we went through, the sadness and the anxiety takes over.
Several years ago, a doctor explained PTSS to me. I asked her if she was telling me all of this because she knew I grew up in a developing country during a revolution and a war. She said no, it’s because your daughter was close to dying last month. That put things into perspective for me. All the stress I had experienced previous to my daughter’s illness was nothing compared to the scared look in her eyes when she was hospitalized.
Depression, anxiety and PTSS are real, but it does not mean you have to live with it daily. You can learn to recognize when you need help and stop and ask for help. Make a list of things that help you heal and look at that list when you are getting close to your breaking point. My list: praying, Texting or talking to (insert name of a VIP). The comfort of my forehead resting on my yoga mat. The burst energy I feel when my hands are on the rough part of the barbell. Breathing after a long run.
When I get home, I get into a routine: rest, write thank you notes, write down the things I learned and what I can improve for next time, do something special with my other child, and remind my husband what a sacrifice it was to sleep on the bed/sofa thing.
The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to help celebrate the human spirit? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.