July 8, 2025

Don’t Lose That Number

When you are the advocate and caregiver and making the appointments, attempting to make sure the medical recommendations are followed by the patient at home, you are also likely the person who knows who all of the providers are that examined, treated or operated on your loved one. BUT, can you find the phone numbers of every provider? The correct ones? Trust me, you obviously don’t have a direct line to any provider unless you are extremely well-connected so do you know the office number of each provider, each specialist, each lab, each home health agency, each therapy program, each rehabilitation facility, and on and on and on.

You need some kind of organized system to keep track of all of these providers and their phone numbers and the other facilities phone numbers. Trust me when I tell you that while some of it is fairly straightforward and easy to search for online, a lot of it (especially anything that began in inpatient) is not easily located with a simple online search. So often I’ve found what I thought was the number and then spent hours calling more numbers given by those who answered the phone when I called the wrong number until I finally get the right person to put the information I want to communicate into their system and then Inevitably comes more waiting while they have to call me back or have someone else call me back. Guess what often happens then? I either have to repeat myself yet again, after already repeating myself multiple times before that, or someone else has to call back Again. This round of medical issues hit the fan in mid-October 2024 and hasn’t quick since (though there are semi-calm moments in between, before the next storm) and I honestly have not had the time to put everything together well in a portable system in one place. I am much more of a pen and paper girl than a user of electronic systems, but they certainly have their place and portability is definitely tally mark for technology on the Pros/Cons list.

For Mom there have now been two hospital systems that she is being treated by just since she and Dad moved in with my husband and I four years ago, leaving behind the county where she lived most of her life (besides her time in college) to live two hours away. Prior to that there were two hospital systems that treated her, with primary attention from one of them. These hospital systems do not share the same electronic medical record systems and while I am thankful that my husband knows how to “link” the different portals from the different hospital systems, it’s still a pain to try to get information from one hospital system to another. It’s definitely not a game of them playing well together. That’s for sure.

So sometime last week (or sooner) I was warned that the home health agency of the small hospital system who had been coming to our home for Mom again for several weeks was down to providing PT (first OT did what they could do and then discharged her, then eventually nursing did as well, and then PT was talking about it) and I was told that when PT discharged Mom from home health then the mobile lab would have to go away also. Why? The surgeon at the big hospital wanted Mom’s bloodwork every two weeks to show whether or not she is nutritionally sound for surgery. Surgery is coming up. I took her to our local lab the first time which was a fiasco I wrote about previously because I took the handwritten prescription from the big hospital and handed it in at the lab and the PA or NP from the big hospital who works with their surgical team had never done a handwritten prescription for anything before and she did not include all of the necessary information so we had to call to get her to fax a new one and come back hours later, but we got the bloodwork done. Then before two more weeks past a very warm home healthcare nurse told us at our home that while home healthcare was working with Mom they could get us a mobile lab. I was thrilled because it’s one less thing I have to drive Mom out to and I have very little time available not to mention the fact that Mom’s bone on bone knees make getting in and out of the house and in and out of the car very challenging. The home health nurse said that she could call to get us a new order (yep, even though the outpatient lab we were using was part of the small hospital system AND those home healthcare nurses were from a group from EXACTLY THE SAME hospital system (the small hospital system) there is no way to go in their computer system to find the order faxed to the outpatient lab. No No No, instead we have to get a new order for EXACTLY THE SAME bloodwork as we had taken last week because now the mobile lab (who works for EXACTLY the same hospital system) is now taking the blood. The mobile lab drew Mom’s blood twice I believe and as we anticipated being discharged from home health and losing the mobile lab I talked to that friendly RN case manager who works on an outpatient basis from home and mentioned that I believed this was going to be an issue. She confirmed that a new order would be needed but made it seem easy and encouraged me to call her if there was an issue. Well, home health PT discharged my mom two days earlier than expected because Friday was July 4th, essentially ending my mom’s connection to home health on July 2nd. I called that RN case manager right away and left a message, but I haven’t heard from her since (and I did have the right number for her). I assume there is a holiday catch up back up. Anyway, on Monday I called the mobile lab and they said they need a whole new order so take the same blood work (which was ordered to be taken every two weeks and wasn’t “unordered”) from EXACTLY the Same Patient at our home because she is now needing it under “home bound status” rather than as part of services being provided for her from “home health.” I asked if the woman from the mobile lab would call the surgical team who ordered the bloodwork to get a new order. Nope, they don’t do that. My job. Just like everything else.

I was fed up with being behind with my work and with everything around the house and I am packing for our family vacation with the kids so I asked Mom to call for herself to the outpatient lab in town to make sure they had the previous order for bloodwork which worked just fine before they dangled the shiny carrot of the mobile lab. So since we switched to the mobile lab, now there’s no order at the regular lab. We don’t have home health (so No Moblie Lab for us) and we ALSO can’t just go to the outpatient lab this week like everyone else. The bloodwork was supposed to be taken today and there was no one to take it.

The number I couldn’t find was the outpatient office of the surgical team for the large hospital. I couldn’t find it easily online either and ended up leaving a message just after 4 PM today when they had just closed for the day asking if Mom still needs the bloodwork anymore and, if so, could they please send updated orders. I left the message on the voicemail of the surgery office that I know was across the hall from the one where Mom was seen, but I can’t find the right number so I am hoping the office where I did leave the message calls me back tomorrow so I can get the number for the correct office and in the meantime the days will tick by past when Mom was supposed to have the bloodwork. Very much hoping that none of this causes the surgery to be postponed. These days I am relating to the phrase “I can’t ‘adult’ anymore” right now.