Wednesday, January 11, 2017

Helping through a Health Emergency

 OK, This actually was drafted last February. The chaos of caring for two teen girls with serious illnesses knocked a lot of my plate last year and one of those things was blogging. But as 2017 roles around and I am getting a brand new lease on life, I am returning to writing. So I am adding this intro, and at the end, I am telling you about my year. But the advice I am writing here, I can still say is accurate. Especially the pjs. 

Last month, my 15 yr old daughter had emergency brain surgery to remove a cyst in her brain. 4 days ago, my 17year old one daughter had a nonfunctional gallbladder removed. Both of these events has led me to write this newest blog....Helping in a Health Emergency. 

1. Offer to pray...and do so. I cannot tell you how much prayer made a difference. In keeping me calm, in speeding recovery, in helping me stay upbeat. Prayer is so highly effective.

2. Respect family privacy. Ok, this doesn't apply to me at all. I posted on Facebook several times a day. I was probably the person that everyone thought shared too much info. But not everyone is me. Many families would prefer to go through these moments quietly. They may share when the journey is done, but not at the beginning. They may share only glimpses into their world. Respect that. Don't push for information. You are not going to get it and you may ruin a friendship over it.

3. When you make an offer to help, be specific. Can I bring you dinner tonight or tomorrow night? Can I stop and buy milk and laundry detergent for your house? Can I drive your other kids to school? The more specific you are about the offer for help, the more likely you are to get a positive response.
In my case, when people offered to make dinner my response was "my kids all cook and they often are working through dinner time, but if you would drop off nonperishables, fruits and vegetables, they would appreciate not having to go to the store." Please don't do the "let me know if I can help" line. I'm not likely to call even if  I realize I need help. 

4. Hospitals are expensive. Never mind the medical costs. Food in the cafeteria, parking, gasoline back and forth. Consider a gift card for gas, or buying a meal plan on the hospital dining rooms. Ask at the nursing station about local restaurants that deliver and buy a gift certificate to that restaurant. 

5. Consider the gift of time. Visiting for 15 to 30 minutes is great, but by day three I wanted a shower and she still didn't want to be alone. Offer to come for an hour or two and sit with the patient,so the family member can go home and take a shower. Or take one there and then read a book in a nearby waiting room. Tell the family member you are coming so they can leave the room if they want. 

6. Think outside the box. One of my favorite things a friend did was send my girls new pajamas. She said they should recuperate in something soft, warm and new. So much more practical than the traditional stuffed animals. 

7. If the treatments are expensive, their health insurance isn't the greatest, or they are taking time off from work, consider a fundraising event. Fundabilities.com in my area is a local online fundraising source. There are lots of them. My friend set one up for me (with my permission), then sent me all the links so the money went into my bank account. It saved me from worrying about the time I was missing from work.

I cannot emphasize the fundabilities  account. Not only did I have the time in the hospital, but all the followup appts. As it stands right now, Brain Cyst Child is better, but in the last year we were in PICU on an overnight hold twice more due to mild headaches that didn't respond to medication, we had probably 15 followup appointments and we also discovered she has tonsil stones. She will be seeing an ENT soon to get those removed.Gall Bladder Girl has also had repeated visits to gastroenterologists because while her gall bladder wasn't functioning, that did not turn out to be the  only source of her pain and bowel difficulties. We are still on the journey to figure out what sends her system into periodic spasms. 

So here I am 1 year and 1 day from the day my youngest had her cyst removed. We survived this year. We pulled together as a family. We had scary miserable days. We had angry jittery days. We had days of amazing family harmony. Appreciate your life. Your kids. Your Health. 

Over the next few weeks, I am going to write about things you need to know to stay healthy in 2017. Here's to hoping my kids and I can do so too. 


Thursday, January 5, 2017

How Can I Help? What NOT to do?

Last month my family had a pretty serious health moment with one of my kids needing emergency brain surgery. I am glad to report that the surgery was a huge success and she is doing fantastic!
In the process, everyone and I mean everyone, asked what they could do to help. My next article will give you some ideas of what to do, but this one is what NOT to do.

1. Do not ask how the patient is doing. No, I don't mean don't ever ask, I mean respect the family's way of communicating and the info they are giving out. I shared on Facebook my daughter's journey and I posted several times a day. I am sure many people thought it was TMI (too much information), but still a few people felt the need to call, text, and Facebook message me asking how she was doing. (One person asked 17 times in the first 24 hours.) Families are overwhelmed with the information they are being given in the hospital and are doing their best to process that info with the people who need to know the answers. Not you. No matter who you are. (My brothers who do not live in town and are rarely on Facebook didn't find out til the 13th. I felt horrible that I didn't tell them earlier, but they understood.) 

2. Don't bring flowers or giant stuffed animals. Flowers are not allowed in ICU units in case of allergies with anyone on the unit, and giant stuffed animals take up valuable, limited space. Also, don't bring candy, food, etc unless you know the patient can have it. The best way to know? Call the nursing station and ask questions. Don't ask the family. (See above). 

3. Don't ask what you can do to help. Again, this isn't about not helping. It's that processing more than what is directly in front of you isn't happening. Ask a specific question... Can I sit with the patient while you get a shower? Can I bring you a healthy lunch tomorrow? Can I babysit for you on Thursday morning? I am going to the store, do you have a favorite snack or toothpaste I could pick up for you? (The more specific your question is, the more likely the family is to take you up on the offer or modify to their need.) My kids all cook and often eat dinner late at night. They didn't want homemade dinners delivered at 5. But when someone offered to deliver dinner, I gave them what worked for my kids. "Because of their erratic schedules, they are asking that you drop things off that they can cook with. Nonperishables that can sit on the porch til they get home. Fruits, veggies, pasta, sauces, potatoes, things like that." 

4. Don't assume the patient will want visitors. Don't assume the patient won't want visitors. Each patient and their family will have different opinions. My orders to the nursing station. "If anyone shows up to visit my child, let them come in." I posted and encouraged people to visit. But again, don't contact the family to make arrangements or find out where the patient was. Call the hospital. Ask about visiting hours and any limitations. In the Pediatric ICU, my daughter was only allowed 2 people in the room at a time. Some nurses would allow a third (occasionally even a 4th). Some were very insistent on two.  I also had access to a Ronald McDonald family room that allow the people who were waiting to see my daughter to be comfortable. I didn't like to leave her alone, but I also knew for her mental health, it was important she see others. So when we got overcrowded, I left the room. Not all moms will do that. 

5. Don't stop caring just because everyone left the hospital. Extra doctor appointments, patient care, and parental concern still inhibits my functioning some days. Dinners may still be appreciated, flowers and giant stuffed animals brought to amuse my house bound teen would be great. Visitors are still welcome and there is no more limit of two. Now without a hospital staff to help guide you, you will have to communicate with the family, but again.... be specific. Can I bring dinner on Tuesday night? Would you like to get out and grab a cup of coffee on Friday? Do you need someone to sit with the patient while we grab that coffee? 

So that is my "What NOT to Do" rant. Thanks for listening. Next week, look for the list of all the amazing ways you can help out. So you won't have to say, "What can I do to help?"

Be Healthy!