Eek! It has been way too long since my last blog. Part of my excuse is the busy-ness of heading to hospice each day. Part of it has actually been that my mom has been home for the past week. I'd like to start this blog by noting how wonderful nurses are - compassionate, helpful, decent listeners (at least most of the ones I've met). Somewhere out there, there is someone I'd like to rip a new one for, but it is not the nurses who have been helping us through all this.So...two Saturdays ago, my sister Amanda got a call saying they'd like to send my mom home. On Monday, I talked to her hospice doctor to ask what he thought would be involved in her being home. He said she was too weak, needed her symptoms to be managed better, etc. so she wouldn't be going home on his watch. Tuesday morning, I got a prison break call from Mom saying that I needed to get down there immediately to review paperwork etc. because she was going home Wednesday. This not being her first prison break phone call (medications seem to confuse things - one sometimes hears what one wants to and not what is said), I called and spoke to her doctor. I figured it must be a different doctor. Not so...same doctor, new outlook on Mom being sent home. I couldn't come Tuesday to review things and I wanted time to set things up, so I said checking out on Thursday would be better after my appointment at WIC. I went to hospice on Wednesday to talk with the nurse about appliances we'd need and how much work would be involved in Mom coming home. We ordered the necessary furniture to be delivered and I told her I'd be back after my Thursday appointment to review medications and all that fun stuff.
On Thursday, my appointment at WIC was a three hour nightmare - no food or drink in a waiting room full of pregnant chicks and children, whose brainstorm was that? Finally at 4pm we got in the car
and headed to hospice to pick up Mom. For some reason, though, my phone kept ringing. I'm horrible at answering the phone while driving, so I ignored it. I was within a few blocks of hospice when I figured it had to be some kind of emergency if Mandy was calling me repeatedly, so I pulled over and answered. Apparently, Mom was at the house in an ambulance wondering where I was. She had been sent home without me. When I spoke to Mom's nurse earlier that morning, she asked again whether I would be picking my mom up. Mom's medications had been ordered at the only CVS that carries IV meds, but I would need to take the prescription sheets to the pharmacy in order for them to hand over the meds. I assured her I would be there to pick those sheets up and get the medications. So...I asked Amanda if Mom's meds were sent home with her since the hospice is a LOT closer to the CVS than our house is. Mandy said Mom was sent home with tons of supplies, including a shopping bag full of syringes and fluids and stuff. So I headed home.When I arrived home, Mom was sitting in the living room waiting for her dinner time medications. I think I handed the ravenous Penny over to Amanda to give her some snacks while I searched the bags for Mom's meds. Lots of empty syringes, alcohol wipes, etc., but no meds. I checked the red coming home folder - aha! prescription sheets and a map to the CVS on the opposite side of town. I couldn't fathom packing Penny up again without feeding her (now five hours without real food), so sent Amanda on the medi-quest. I saddled Penny up for dinner, assessed the supplies we DID have and had a little something to eat myself. Somewhere in there, I realized I didn't have a sharps bin to put all these pokey needles in, so I called Amanda to request that she ask for one at the pharmacy. The phone in the living room began to vibrate - of course, she had forgotten her cell. Luckily, the pharmacy called the house just a few minutes later. She had dropped off the prescriptions and the pharmacist told her to come back in 30 minutes. Sadly, the pharmacist hadn't examined the prescriptions and only noticed that they were for IV meds after Amanda left to occupy herself for 30 minutes. It was the wrong CVS - they didn't carry IV meds, though they did have just one sharps bin for sale. Two hours later (thank you, rush hour traffic), Mandy returned from the pharmacy, having stopped at several pharmacies in her search for the meds. Her quest was only partially successful as well, the drug store was out of heparin and she'd have to drive back (one hour without traffic) to get that later.
Well, it was getting close to 8pm, the time for Mom's next round of meds. I sat down with the sack full of liquid excitement and began to read the various warnings and instructions. I recalled one of Mom's meds I trained on requiring refrigeration, so I wanted to get that put away ASAP. After 30 minutes of unsuccessful reading, though, I re-prioritized and began work on preparing her 9pm medications. I got out all the supplies sent home with her and the appropriate teeny phials of fluid. I needed to dilute 0.2 mL of medicine into the pre-filled 10mL syringe of saline. "Ok, so I'll need my pre-filled saline syringe and a teeny measuring one. Huh, looks like all the syringes in the package are 10 mL. I suppose I could suck out 1mL, dilute it in 9mL, then only inject 1mL. Wasteful, imprecise and a little risky. I think that would assume far more knowledge and precision than the nurses would allow the average family member. Something is seriously wrong with these supplies." This lovely experience, coupled with Mom falling out of her chair and bonking her head (but not letting me help her up for fear of injuring me) led to what you can imagine was a somewhat frantic call to hospice requesting that we either get more supplies and/or check Mom back into hospice. After a 30 minute wait to hear back from someone who could help us, I called again and this time received an immediate, "The on-call nurse needs to come down to hospice to pick up the supplies you need, then she'll be right over."At last, the nurse arrived with a giant sack full of everything she could think of having to do with IVs or IV meds. I was able to put together Mom's medications and finally relieve some of her horrible nausea. We got her into the lovely hospital bed since the medications often make her confused and uncoordinated. As I sat down to inject the meds into her port on her arm, I noticed that the port was not compatible with my syringe - the attachment the syringe hooks onto was missing entirely! Luckily, the nurse had brought a pack of those as well. Yay! Mom got her relief and settled down to sleep. I sat down for a few moments with the nurse to assess our supplies and discovered that between what she brought and what we had, we really didn't have enough to last us for more than a day. We knew more medications were on order, but not when they'd arrive or what they'd be (if more of the same, then likely pretty useless). We made a list of what we needed and were pleased to learn we'd have a new nurse spending the night with us and she'd be able to bring some additional supplies. Yay! The critical care nurse brought several helpful handfuls of things, but really just what was quick to hand in the supply closet.
Each shift change, the new nurse would be asked to bring a fresh batch of things we'd run out of. Many of them got grumbles and uneasy questions because the folks at dispatch just couldn't understand why we were running through supplies so quickly. We sat down on Saturday with the on-call case manager, who listened to how I had been taught to administer meds, compared that with our prescription sheet and noted that there were inconsistencies in the way the prescription sheet was written. The sheet was written as if we were pushing meds into the IV itself, when in fact the IV fluid prevents us from doing so and we must inject fluids into another port. This means we have to use lots of saline to flush every time we give meds. However, saline wasn't prescribed and we would just keep running out because the folks sending things were looking at our prescription sheet. She then came the next day and reviewed each step in our process to assess whether we really needed to use as many supplies as we did. For example, she found that we didn't need to use as much saline to dilute most of Mom's meds. She also told us we could conserve our puny sharps bins by taking needles off the syringes and just throwing those away (with syringes attached, we'd fill a sharp bin in two medication rounds). She also checked when and what would be shipped to us (meds only on Monday).I don't think we would have made it through the weekend without all the help of our dedicated nurses. We had crisis care nurses staying with us 24 hours, doing everything with Mom except administering medications. They also helped from time to time with watching Penny while I tried to maintain some semblence of sanity and cleanliness around the house. They did their best to clarify any questions we had and jumped through all kinds of hoops to get the supplies we needed to keep Mom comfortable. When it looked like we finally had the medications under control, we talked about stopping the critical care nurse visits. Mom's health seemed to decline that night, though, and the nurses just kept coming. The nurses are still staying with us 24 hours a day, now working on making sure Mom's medications are properly balanced to provide her the relief she needs. I'm not sure how long they'll keep coming, but they've been awesome. My family has also been really great about stepping in, coming over and just letting me nap periodically.
Being the only one home who can administer meds and Mom needing more because of her increasing pain and nausea, there are times where I spend almost every 2-3 hours giving meds, leaving little time for rest. So the occasional 2-3 hour visitor who can just watch Penny while I sleep has been wonderful.Speaking of which, I should give Mom her bedtime meds and head to bed. I'll try not to go so long between blogs, but no promises. Thanks for all your prayers and support. They are needed and appreciated.
