Posts tagged ‘medically fragile’

November 24, 2019

Just Do What You Can

You don’t need to tell me to call if I need something…just do what you can! It’s been a difficult past few weeks. We received news that my 18-month-old granddaughter has developed an unexpected complication that will require a 3rd open heart surgery. On the heels of that, my elderly cousin whose care I oversaw began to decline quickly and passed away. As this next season of difficulty for my family has arrived, so have the well meaning statements to call if I need something.

I appreciate it. I know some of you will drop everything to help. I also know some of you say to call, but in reality will most likely stay too busy to actually assist. This is the nature of the ebb and flow of relationships.
hospital
So, here’s the thing. What my family knows from the past year is that when hospitalizations grow lengthy and we all grow weary, many times it is simply beyond our ability to ask for something. Our silence doesn’t mean we don’t need help. It means we need it so much that we can’t get our thoughts together to articulate anything specific. We are barely able to put one foot in front of the other.

I’ve been in your shoes, wanting to help and hoping you’d instruct me, take the burden off me, and let me off the hook instead of having to take initiative and figure things out. I’ve wondered whether I’ll be perceived as pushy or intrusive if I take it upon myself to decide what you need. I’ve worried that I’ll accidentally do something that makes you feel worse.

In spite of those reservations, I have taken the initiative to buy groceries after a phone call in which I sensed the stress and overload a friend was feeling. She had moved her mother from a nursing home into her home to die, it was her husband’s busy season at work, and one of her sons was going through a nasty break-up and had moved back home. She mentioned she was out of milk and couldn’t leave the house.

I heard her. I did not ask for a list or permission. I went to the grocery store and bought some basics-milk, eggs, coffee, cheese, crackers, a rotisserie chicken, mashed potatoes, salad mix, bananas, muffins, a loaf of bread, deli meat, paper towels, and toilet paper. I didn’t worry whether I had chosen her brand of paper towels or coffee. I just delivered enough to get the family through a couple of days, hopefully giving them a chance to rest and rally.

Similar things have happened for my benefit. A few weeks after my mom died, I cooked lunch for a friend. After lunch, I felt really bad. My stomach hurt. I had no energy. All I wanted to do was recline. My friend checked to see if I needed to go to the doctor, then she told me to lie down on the couch and stay there. She cleared the table, washed every dish in the kitchen, and wiped down the stove. She saw in that moment what I needed and did what she could. It was a kindness I will never forget.

Last weekend when I got home from my cousin’s funeral, there was a bag of warm food sitting on my porch. The friend who I had taken groceries those years ago had roasted sweet potatoes and cauliflower and steamed spinach with almonds and raisins then delivered them to my home. I had been on the road for three hours. Arriving to this gift warmed my belly and my heart. I am so grateful for friends who seem to instinctively know how to help!

But not everyone has this sixth sense. What if you don’t know how to help? I would say, just do what you can…

When you don’t have time or are too far away to clean the kitchen, call or text. If you wait for me to post something or send an update, it may not happen. It’s not that I don’t want to keep you in the loop. I’ll try, but sometimes my energy is directed toward processing the news that EM is being immobilized and put back on a ventilator or trying to get some work done in the few hours I have before picking up DJ from school. A message saying you’re thinking of us or wishing us a day without bad news is always welcome. I will respond when I am able.

If you want to help and texting doesn’t feel right, consider a gift card for an errand running service. During a 60-day hospitalization this spring, my daughter-in-law’s co-workers purchased a gift card from such a service that was well received. My DIL needed keys duplicated and distributed, but getting to the locksmith or hardware store seemed impossible. Suddenly, she had a solution!
pizza
When you live close but are really busy, think about piggy-backing on something you’re already doing. When you order pizza, pick up an extra one and drop it off at the hospital on your way home. A quick text and we can often meet you at the front door. You won’t even have to get out of your car.

Of course it doesn’t have to be pizza. If you know something specific we like, bring it. If not, when you eat out, carry away a Poke bowl topped chicken and other generally liked topping choices; a salad with a couple of dressing choices on the side; a loaded baked potato with all of the toppings on the side; a baked chicken breast with mixed veggies; a burrito bowl; muffins or croissants. Whatever you bring will be welcome. If we can’t eat it, we will share with another family. It will not go to waste.

You can do the same when you cook at home. You don’t need to prepare anything extra. Drop off leftover mac & cheese, pork tenderloin, squash casserole, chili, enchiladas, pot roast, stir-fry, or steamed vegetables. It doesn’t have to be a full meal. Your vegetables added to protein from the hospital cafeteria will still be a welcome change.

Another easy contribution is a few home essentials you can add to your regular shopping list. Choose things everyone needs or can use that can sit on the porch for a few hours without spoiling – paper towels, toilet paper, trash bags, facial tissue travel packs, zip top bags or snack containers in a variety of sizes, hand soap, hand lotion, body wash, dental floss, Tylenol, disinfecting hand wipes or diaper wipes if there are small children in the household, kitchen wipes, unscented laundry detergent, dishwashing pods, a snuggly throw, magazines, trail mix, fresh or dried fruit, nuts, instant oatmeal or grit packets, cereal, microwavable rice, or a variety of pre-made soups.

Last week, a friend brought me a couple of things I requested from the grocery store. She threw in a copy of National Enquirer. It was the perfect addition! It made me laugh and gave me frivolous reading plus sudoku and crosswords to distract me from funeral planning.

When you have extra time, lawn care, plant watering, or houseplant sitting can be welcome contributions. Present them as options you are going to do unless there’s an objection rather than asking whether they need to be done. Providing pet sitting, grooming, or transportation to the vet can also be valuable services.

Other ways to help may be to take a shift sitting with the patient at the hospital or taking the other children to the museum, making a Halloween costume, delivering or decorating a Christmas tree. Keep things simple and appropriate. If the family normally has a small, simple tree, stick with that. Don’t bring in a 20ft elaborately decorated monstrosity unless the family has expressed the desire for one.

Perhaps the best thing you can do is make time to listen. Long-term illness and hospitalization are isolating experiences. Very few people know what it’s like to be in ICU month after month. There’s no need to offer platitudes, cliches, or assurances that everything will be okay. You don’t know that everything will be okay and even if it is, we’re stuck in the current moment. That’s where we need you to hear us, now, not in the future when things may be less difficult.

You don’t have to try to make us feel better. Just be there, really there, able to hear and shoulder our pain and loss. That will make us feel less alone, more connected, and therefore better.

If you’re not up to that task, it’s okay. There are many, many ways to reach out, help, and show you care. Just do what you can.

https://www.psychologytoday.com/us/blog/emotional-nourishment/201608/helping-friend-whose-loved-one-is-seriously-ill

http://www.cooking2thrive.com/blog/five-ways-cope-life-feels-like-always-someone-else/

http://www.cooking2thrive.com/blog/id-tell-you-but-then-id-have-to/

January 8, 2019

I’d Tell You, But Then I’d Have To…

I’d tell you, but then I’d have to…quit talking because you’d have tuned me out anyway! And you thought I’d have to kill you. No, you’re safe. This year, I really want to map out some expectations for the healing process. I feel like that’s a missing piece of the puzzle for many of us.

But that map will not start today. Why? Because life has handed me other priorities. I know you’re familiar. In random waves of difficulty, life can interfere with the best of intentions sapping your energy for anything other than the essential.
meds
The virus I had on Christmas lasted a good 14 days. Two days later, my medically fragile granddaughter came to stay with me while her parents travel out of state. She is sick. Her cough sounds like she has the same virus I had.

In the average baby this would not be of great concern, but this 8-month-old has spent 50 of the past 128 days in CVICU (Cardiovascular Intensive Care Unit). The last cold she got put her in the hospital so oxygen dependent that when the oxygen supply accidentally became disconnected, she coded. That’s short for they called a code blue meaning she required immediate resuscitation.

Em has a paralyzed vocal cord and has not even attempted a bottle since August. She hasn’t successfully eaten more than half an ounce from a bottle since she was 6-weeks-old. She isn’t comfortable with swallowing. That means the only way she has figured out to get rid of the drainage down her throat is to throw up.

Again, not that big a deal…except she often starts coughing during a feed and then throws up to clear her throat. (During a feed – that’s how you start to talk when you spend lots of time in a hospital.) We fill her tummy through a button attached to a gastrostomy tube (G-tube). Three times a day, we add medications to her food. If she doesn’t get enough diuretics, her lungs fill with fluid so keeping the meds down is essential.
gtube
This is my main priority – keeping meds in her. Second is monitoring her pulse ox. I’ve had to keep her on oxygen the past few days. That means lots of logistical maneuvering and plastic tubing snaking through the kitchen into the living room, dining room, and bedroom. I move the oxygen concentrator in the morning and evening, but I don’t want to have to move it all day long.

Now, you’re probably either thinking, “bless your heart, I can’t even imagine” or “yeah, that sounds awful, but you’ll get through it and everything will be better”. Either way, I’m sure you’re ready to tune out unless I get to the point.

pumpWait…I haven’t even told you how long it takes to measure out 1.6, 1.875, and 5.625 mls of 9 different medications. I haven’t explained that her thyroid medication comes in 2 different pills. Depending on the day, I have to choose a 25mcg pill or cut a 75mcg pill in half, crush the pill, add water, place the resulting mixture in a slip tip (yes, that’s really what it’s called) syringe and inject it into the button. I haven’t mentioned any of the almost daily issues with equipment – a tube that slips off the feeding syringe and soaks me during a feed; the feed pump we use at night reading NO FLOW OUT even though there’s no obstruction and I can prime out liquid; an auxiliary port on a tube that gets caught, comes open and dumps meds and milk in the crib; the pulse ox sensor that has too much ambient light to work, etc. I haven’t told you that Em has panic attacks during which she starts gulping air. That means she needs constant burping through the burp tube, but she also needs to be held close to calm down. Those can’t be done by one person at the same time. Oh, and Em can’t sit up on her own yet. She has Down Syndrome and has spent so much time in the hospital she is way behind. Because she weighs 17 lbs, that adds another level of difficulty. Yeah, I know blah, blah, blah.

But that is the point. To feel like you understand what my days really look like, I need to tell you even more details. When I do, 98% of people stop listening. I can visibly see it happen. Some people want me to buck up. Others just don’t want to think about it. Others wish I’d say something interesting for a change. Many stop me by saying something they mean to be comforting, but often reflects that they haven’t absorbed what I said.

I am lucky. For me, the relentlessness of caring for a child who can go from okay to critical in 24 hours is a temporary situation. For my son and daughter-in-law, it is every day on top of jobs and caring for a two-year-old. When Em’s in the hospital, one of them has to stay there with her.

Not only do they have the stress of the routine, they have to make some really tough decisions. Em has pulmonary hypertension. There are 12 cardiologists who consult on her case and they fall into two different camps on treatment. Half of them would have her living in the hospital right now. How do you decide whether to bring her home or keep her hospitalized when the experts can’t reach a consensus?

And to all of you who want to say, you’ll get through this and everything will be okay – yes, we’ll get through it and it will be okay, but we do not know whether her health will improve. It may not. Getting our minds around the fact that this may be our new normal is more than any of us have been able to do. It just feels too sad. And that’s when it’s not feeling too overwhelming.

When you’re up from 2am to 3am with the average baby it’s tiring, but you’re buoyed by memories of holding your baby close or hearing her laugh. When you’re up from 2am to 3am with a medically fragile baby who is sick, you worry that you didn’t spend enough time holding her because you were too busy performing the tasks that keep her alive. That is a lonely, emotionally exhausting 2am.

I think we all just want to know we’re not alone with this. We want to feel a sense of support and connectedness in this situation life has dealt us. There’s simply no way to feel that if we don’t feel seen and understood. I don’t say that just for me or my family. We are just an example. It applies to all of us. It is the real gift we want from each other.

As humans, we may be geared to need connection, but somehow at this moment in time we seem to be lacking the will to stay tuned in when things are hard to hear. That means those who most need support are least likely to get it. I don’t know if that’s why we have so many people who feel the need to escape through drug and alcohol use, but I think it may be related.

Speaking from your heart is a vulnerable experience. Listening with your heart sometimes feels even more so. When you really see people, it changes your perception and not just of others, but of yourself. Keeping your heart open requires strong boundaries and oceans of courage. This is the real work of a full life. And many of us miss out.

Em and I saw a beautiful example of connection this week. I flipped on the Ellen show during a feed. Dax Shephard was on and it was his birthday. During a segment called, “Ask Dr. Dax,” his wife Kristen Bell asked from the audience what he would recommend giving someone special like a spouse for their birthday. He answered, “I would say please, please, please give that person love and support for 11 years, give them two beautiful baby girls…and you’re good.” Kristen’s eyes filled with tears, as did his. It was a beautiful thing to see.

Not everyone has a spouse, partner, parent, or child with whom such a connection is available. Today, you may have the privilege of being the only person who can offer active listening to someone you encounter. You may be the one person who can hold the space for someone to heal. It may not be instinctive or easy. It may interrupt your busy life. You may not feel appreciated in the moment. In spite of this, should you choose to listen, you give a valuable gift when you find the courage to stay tuned in.

If you have made it this far, thank you for listening.

https://pedsurg.ucsf.edu/conditions–procedures/gastrostomy-tubes.aspx

https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

https://www.cdc.gov/ncbddd/heartdefects/coarctationofaorta.html

https://www.mayoclinic.org/diseases-conditions/atrioventricular-canal-defect/symptoms-causes/syc-20361492

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070778/

https://www.psychologytoday.com/us/blog/emotional-nourishment/201612/why-we-need-each-other

https://armchairexpertpod.com/

https://www.youtube.com/watch?v=2cF-PXWt_bQ

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

November 19, 2018

Cough Drop Pep Talk for Thanksgiving?

Do I really need a cough drop pep talk for Thanksgiving? Why does my cough drop wrapper say, “A PEP TALK IN EVERY DROP” anyway? If I have fever high enough to think cough drops talk, I need something besides a pep talk. The pesky little ovals don’t stop there. They advise me to “Buckle down and push forth!”; “Power Through!”; and “Seize the day.” Whaaat?
coughdrop
Maybe I’m just in a bad mood because I can’t sleep, my throat hurts, and my ear is full of fluid. Eating green beans, cauliflower, sweet potatoes, and oranges may be culinary medicine, but they aren’t doing the trick to kick this virus. Now, I’m out of food and I don’t want to get out in the cold to go to the store.

Should I take the cough drop wrapper’s advice and power through? After all, I just have a cold, not the flu. OMG, I’m rhyming in a blog post – I must be sick. That aside, I don’t like clothes with affirmations on the tags or wrappers that tell me what to do. It’s not that I mind affirmations, I just don’t like them in my clothes. It makes me feel like a walking fortune cookie. And it’s not that I don’t sometimes need to be told to buck up, I just don’t want that advice from something I take when I’m sick. It seems inappropriate.

If the wrapper said, “A delicious complement to hot tea.” or “Stay home and sleep.” or “A warm snuggle for your throat!” or “Take time to heal.”, perhaps I could get behind wrapper advice. But telling me to be unstoppable is really bad advice when I’m ill.

The people following that advice are more likely to go to work, church, and the store, sick. They’re more likely to stay stick longer. They’re more likely to be too tired to do their best at work or be as safe a driver as usual on the road. And no doubt they will contaminate the air on my next flight. So stop encouraging them already!

Most of us have been programmed to keep going when we would get well faster if we went to bed and got some rest. We feel like we can’t miss work or class, a family birthday, or a soccer game. Many bosses are happy to reinforce this belief.

And then there’s all of that holiday cooking to be done! That’s certainly something we shouldn’t be doing when we’re sick. Seriously, preparing food for others when you’re sick can expose them. Most states have food prep guidelines for restaurant employees that include restrictions for those with cold, flu, and bronchitis as well as more serious illnesses.

I know it’s tempting to minimize the risks when we think of beloved holiday traditions, but if someone in your family has a compromised immune system, exposure to the flu could put them at serious risk even if they’ve had the vaccine. Having a medically fragile grandchild has increased my awareness of the need to be mindful about spreading germs. It also means I felt the frustration of missing out when the family welcomed her home from a recent hospitalization.

Perhaps those cough drop pep talks are meant to encourage malingering patients to get back to the business of every day, but they’re most likely to feed the determination of those who won’t stop in the first place. If we want to assist our immune systems, it is important to recognize the value of down time. Resting leaves our bodies with more energy available to fight off bugs and rebuild cells.

So, if you’re sick this holiday season, forget the cough drop pep talk! Eat some soup. Order food. Go to bed. Take time to heal. Not only will you get well faster in the long run, you’ll help contain the spread of viruses and/or bacteria.

Now it’s time for me to follow my own advice and take a healing nap!!!

http://www.moodmaybe.com/2016/05/flax-affirmations.html

https://www.gethalls.com/

https://www.cdc.gov/media/releases/2016/p0215-enough-sleep.html

http://www.health.state.mn.us/foodsafety/dwi/eicondguide.pdf

http://www.cooking2thrive.com/blog/easy-gluten-free-thanksgiving-menu/

http://www.cooking2thrive.com/blog/small-crowd-small-bird-cornish-game-hen-thanksgiving/

http://www.cooking2thrive.com/blog/hosting-thanksgiving-easy/

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”