Hospital Stay Musings and Advice

For those of us with multiple unusual and/or invisible illnesses, diagnosing a new condition can be difficult. Many times symptoms can be attributed to several of the conditions we already have so it's hard to tell if a given symptom is related to the new problem or a chronic one.

My mom is one example. She has many autoimmune disorders as well as some other life-impacting medical diagnoses, but for the purposes of this blog, I'll include only the most significant ones.

History: A few days before Christmas this year, she started showing symptoms of bronchitis. She gets bronchitis very easily and said it felt like when she's had it before. But because the family was coming over on Christmas, she wanted to be safe. She went to the doctor to get tested for flu and COVID.

COVID was negative, flu was negative, but she was right and was diagnosed with bronchitis. A couple of shots and a few new prescriptions later, my whole family was relieved that she wasn't contagious and that it was something easily treatable.

Fast-forward to two days later... she felt worse and the family was supposed to come the next day. Knowing that COVID rapid tests aren't always accurate, she decided to be tested again, just to be sure it was safe for the family to come over.

She didn't even make it to the doctor, as she almost collapsed getting ready. As she was somewhat unresponsive, I decided to call 911. 

When she arrived at the hospital, they tested her again. She was still negative for COVID, but this time was positive for flu. The bronchitis diagnosis was also confirmed.

That explained her feeling worse but didn't explain how bad off she was before the ER visit. They did a full workup and found out her blood pressure was high and her sodium was low.

This is where some of her chronic conditions first came into play. She has stage 4 kidney disease as well as POTS (Postural Orthostatic Tachycardia Syndrome - a form of dysautonomia). She has battled low sodium for years and was even hospitalized once to figure out why - to no avail. The POTS means her blood pressure is all over the place on a regular basis.

It takes a lot to communicate that to the doctors and nurses. They don't understand that it's okay to not treat her for higher than average blood pressure readings because she's so sensitive to the medicine that could drop her BP to dangerously low levels. They don't understand that her body doesn't respond to the typical treatment for low sodium. 

I know it's human nature to apply a standard treatment first. I also know sometimes patients or family members don't know the medical history well enough to communicate these types of issues. But I simply don't understand why a patient's doctors aren't consulted more when it's a complicated case.

Mom ended up having seizures from the low sodium level. As of today (her 10th day in the hospital), she seems to be doing better. However, her sodium level has a long way to go - and they won't let her go home before both the sodium level and seizure activity gets back to normal.

So... I wanted to share some of what I learned during this hospital stay to hopefully help someone else who is in the same situation.

- Document. Document. Document. 

If you or someone you love has complicated health issues, start documenting (or ask someone to) from the moment you start getting reports from doctors and nurses.

Document... 1 - anything unusual that you are seeing. For example, I didn't know that one strange behavior I noticed was actually a seizure. It would have been so helpful if I had kept a log of anything different she did. 2 - Document anything you need to ask the doctors and any request you made to a nurse or hospital staff. 

Make sure you add dates and times for all of this information. When a hospital stay starts, you think you can remember it all. But the stress of a loved one being sick, doctors and nurses coming and going, and not getting enough sleep yourself, makes the days and everything else blur together.

The advantages of doing this include being able to report accurately to family and friends (dealing with so many doctors makes it hard to keep everything straight). It gives you more information to tell the doctors about things that they don't get to see. But most importantly, it helps you remember to double-check that anything you asked about. Nurses are overwhelmed and it's easy for them to miss something. On the other hand, it's easy to ask about those things...and then because you become overwhelmed, you forget to follow up and make sure it was done.

- Advocate for the patient.

Like I mentioned earlier, nurses are overwhelmed. They mean well and are often extremely nice but they have too much to do. Things get overlooked. Doctors assigned to a case don't have a full picture of the history of a complicated patient. 

Some of the issues I've had to deal with for this visit:

• I suspect that my mom hasn't gotten all the meds she's supposed to take. I've asked for a list of what they are given her more than once and still haven't gotten it (but I'm still asking). 
• Mom has now been in here for nine days and hasn't been given a shower. I'm still working on that.
• Because of a possible injury to mom's shoulder while here, I asked for an x-ray. I had to ask 3 times before she got one.
• She was extremely uncomfortable due to having an NG (nasogastric) tube. They had to do it because after one seizure she was too out of it to eat or take meds. But when she started feeling better and could swallow okay, they left it in "just in case". I pretty much demanded that they take it out as it was causing her major comfort issues which stressed her out. As you know, stress can make it harder to heal.
• Ditto for her oxygen cannula, pulse oximeter, and blood pressure cuff. After a certain point, it's obvious that her vitals are doing well, even through events like seizures. All they were doing at the point I asked to have them removed was causing her stress.

- Take breaks.

I'm the only daughter, the one who lives with mom, and the one who has the most flexible schedule. My dad wants to be here, but he is showing signs of dementia and gets confused easily. My younger brother is a nurse and is helpful in interpreting what the doctors say but doesn't have time to help with day-to-day care. My older brothers work regular, 9-5 full-time jobs. Plus, all four men are, um, men. Yes, it's stereotypical to say,  but not one notices all I do about mom's needs and symptoms.

All this means I'm the one who primarily takes charge during a hospital stay. Even when others can come and visit, they can't tell the doctors how she's really doing, as they haven't been here the majority of the time. I need to be here each day until all of her doctors have made rounds, at least. If she's not doing well, I need to be here all of the time.

But even though I technically need to be here all of the time, I know my limits. I can't do that. I have to leave for a few hours (at least) each day and take a good nap in my bed, take a bath, and do a few work-related or personal-related things at home. I know myself well enough to know that it's extremely important for me to be at my best when I'm here, and if I get burned out, it won't happen.

- Keep an ongoing list of things you need to bring to the hospital and have a central place for those items you need to take back home.

As I've been the primary caregiver for hospital stays (some prolonged) with my dad, mom, boyfriend, and daughter, I now know what to bring. Here is a list of things to possibly take with you if you are in my situation.

• laptop and/or tablet
• cell phone
• charger(s) for phones, tablets, and laptops
• cubes for USB to outlet conversions
• an extension cord for all of the above
• paper and pen to take notes
• drinks and snacks; Mio or something similar if you want to drink the water they provide but want something different sometimes
• cash (small bills) for vending machines
• medicines if you plan to spend the night
• lotion, eye drops, and/or lip balm as hospitals can be dry
• a jacket or sweater as hospitals can also be cold
• a small suitcase or bag for going-home clothes for the patient
• hand sanitizer, as the patient may not be able to wash hands before eating
• comfort item from home

- A couple of other tips I've found to be helpful. 

• I brought a backpack initially with what I needed at first. I leave it at the hospital. Then I have a smaller bag to take back and forth for daily needs, like snacks, drinks, or papers I need for work.
• Keep things like the big cups or other containers to keep extra straws, ketchup, salt, etc in. There have been several times things have happened like there is not nearly enough ketchup for a meal. You might drop a straw If you get extra of anything, save it for those times.

I hope that you are reading this because you think it's interesting and you don't need the advice right now. But if you do become a caregiver for someone who has to stay a few days or more in the hospital, I hope something I've said helps.