For 12 years I have been administering medication for my children. There have been seasons where one or two medications were only needed. Seasons where all the medication administered would need to be liquids to dispense through nose tubes or gastrostomy tubes. And seasons that have seen me give medication all throughout the day, and night.
I now manage and distribute over 420 medications per week to my two children, who cannot survive without them.
There are a few things that I have learnt along the way to help make managing this load a little easier.
Start With A List
For me, getting anything down on paper visually frees it from my over-crowded mind and makes it more manageable. When you are discharged from hospital with medication the pharmacist of the hospital will come and have a discussion with you. If they don’t, make it a priority that you see them. You can request a spreadsheet with names, times and doses of medication all in easy-to-read and follow instructions.
With this spreadsheet I record any useful information that I need, or that someone else can follow if I ever get a night off. I print two copies for each of the girls and laminate one copy. I put one copy in the girls’ hospital folders, which you can read more about in my upcoming post on how I manage appointments and information. I put the other copy where the medication is taken.
2. Designate An Area
When we moved into our new home we moved with one seriously ill child, and another on the way. We returned home after spending months in the hospital and we needed to create a ‘med room’. After trying a few different locations, I resolved to use the benches of my new walk-in pantry as the med room. Not exactly what I had in mind when we built, but very grateful we have it. I use a large tray to put the girls' medications on and make sure I keep one girl to the left, and the other to the right. I velcro the spreadsheets to the pantry wall above where the girls' meds are, so it's easy to change, or pull down if needed.
I put two pieces of paper towel down, one for each girl and lay out the meds at the times needed to be taken and the girls take them from here.
I then had to organise the excess medication. As we need hundreds of medications on hand at all times I found a drawer for the remainder of the medication. A drawer is a lot easier to clearly see the medication, how many bottles, and to organise by date that the medication has been made. Most medications have an expiry date, so when new medication comes I make sure I move the current medication to the front so that can be used first.
3. Fill a few weeks at a time
As the girls started to require fewer liquids in replacement of more tablets, I moved to the pill cases. By using the medication cases I spend several hours on one morning filling cases, but only have to do this every two or three weeks. I much prefer knowing that there are med cases waiting to go, so it takes more off my plate from my weekly to do list. It can also depend on the medication whether this can be done or not. Some medication can break down when exposed to air, and the med cases are not airtight. This is also a service that any pharmacist will offer, at a price, to do for you. So if it's too much for you to find the time, or too overwhelming, you can outsource this.
Once the medication cases are filled I put them on the tray on each side. I can then just open the time slot and leave the meds on the paper towel for the appropriate child at whatever hour it is needed. The tray where the medication is taken is beside a sink, so all syringes, or med cups then go straight into the sink and washed every night as part of my nighttime routine, which you can read more about here.
Making sure you have the prescription to fill a medication can be more problematic than the administering itself. For us to just get in to see a GP is filled with complications from exposure to new bugs, or just an overload with already existing appointments that we tend to try to avoid it.
Luckily for us with today’s technology it isn’t too difficult to stay on top of this. The first prescription you receive is always in a paper from. From here there will be a certain amount of repeats on them. The paper prescription needs to be collected from a GP or a specialist, but the repeats are then just collected at whatever pharmacy you leave the initial prescription at. Depending on how or where you like to keep your prescriptions depends on what technology may be available for keeping track of the extra prescriptions.
Some of the medication we need we can only get at the Royal Children’s Hospital in Melbourne, and the system I use there is different from the local pharmacy. I keep prescriptions at both the Children’s Hospital, and also at my local pharmacy. I don’t retain any paper prescriptions- as it’s unnecessary paperwork for me to be storing.
At the Children’s hospital I can find out what prescriptions we might need via email. Using the laminated sheet or the second copy, I can see quickly and easily the list of medications that I need and then check with the hospital. Or a quick check in with the Hospital pharmacy before an upcoming appointment, means I know exactly what prescriptions I need to ask for while in the appointment, and this avoids any unnecessary trips to the GP. If any doses or new medication are prescribed I always ask for a new prescription to support either the change or the new med.
Local pharmacy prescriptions
Our local pharmacy is a Health SAVE pharmacy and they use an app, which is extremely helpful. Not all pharmacies have an app, but it is worth asking if they do, as it can help streamline all prescriptions in the one place. The app tells me all the info I need to know, such as:
the remaining prescriptions ,
when it was last administered, and
how many days are left on the medication I have at home.
This makes it really easy for me to see what medication prescriptions are running low, and what might need renewing.
Another tip is to make sure your GP is up to date with all prescriptions. As mentioned earlier we try to avoid GP visits, but when we do visit, it is important to make sure they have all the current medications on file. As we see so many different specialists the meds are not being prescribed by the GP, so it can be tricky if you need a prescription urgently and they don’t have it already on file. This is more of a safeguard, so the team you have around you are all on the same page, and you are able to access what you need, when you need it.
Some of the most important medications that the girls need can take up to seven days to make. When our season was at its most chaotic, I developed a simple way to make sure I was on top of reordering, as running out was not an option.
Start with a budget - I budget every month for the funds necessary to pay for the girls medications, as some are not covered by the under Pharmaceutical Benefits Scheme (PBS).
Do an audit - the app from the local pharmacy allows me to see when I need to reorder, the hospital system does not. I order once a month on the app at the local pharmacy and I know it will see me through to the next month.
Collection - every month I also collect medication from the Children’s Hospital. When I collect the medication from the hospital I rebook the pick up
Requesting new prescriptions - when collecting the medication from the hospital, it gives me a chance to also check what prescriptions I might need to drop off in the meantime, or ones that were coming close to running out. I would make a list, and request the needed prescriptions scripts in the next appointment.
This process took me a little while to work out, and more time to make it a habit. Making the organisation of the girls’ medication, medication they need to survive, a well established habit has significantly reduced my stress, workload and given me peace of mind that we always have on hand the medications the girls need.