Organizing My Medical Task List

I realize this photo isn't great, but you'll get the idea.  In August of last year we finally hit our breaking point and hired a nurse that we paid out of pocket.  I don't know why we waited so long.  It was worth every penny and sacrifice.  We kept her hours to a minimum, for grocery shopping, parent - teacher conference, and the occasional date. Then in December we got the news that Maaike had made it on the Travis C. Waiver, the Holy Grail for Utah's technology dependent children.  The programs vary by state (and hopefully country), some being much better than others, but thankfully there is help out there.  In Utah there is a 2 year waiting list, in some states the moment you are trached the calvary arrives, in some cases it might be worth it to move.  The Travis C. Waiver covers only children who are dependent on machines for survival.  It works as a secondary insurance, so we still pay for our regular insurance for Maaike and then the Waiver picks up what's left over.  It also pays for 50 hours of nursing!  Absolutely amazing!  At first I didn't know what to do with all that time, but now I am finding endless uses.  I stay at home most of the time the nurse is here, but now I am actually able to get through daily tasks and even adding back in some hobbies without having to compromise Maaike's care (a trach child should always have eyes on them).  I've even been able to do a little sewing again.  :)  

But with new blessings come new problem solving.  Between the nurse, my husband, and I it became a little confusing who was doing what and what had and hadn't been done.  Light bulb.  Make a medical task list calendar.  Problem solved.  Its so simple, but so effective.  I've hand written what needs to be done each day and then we cross it off as it happens so the next person knows what is left. 

I put everything on the list, from trach changes to emptying the diaper pail, from changing out the suction catheter to signing the nurses time sheet. Revolutionary.  I need one for each kid.  You can also see I've got Maaike's going to bed instructions, suction depth, and important phone numbers on her board.  I hangs on the wall by the changing table (aka trach command center). I am patting myself on the back for this one.  Occam's razor wins again!

Organizing Medical Equipment

On July 2nd we will have our 2 year anniversary since being trached, and by saying "we" I am absolutely implying that it happened to our whole family.  It really has changed our lives in so many ways, but I assure you that one of those ways was better.  Our lives are indeed more scheduled and at home, but we are happier than we have ever been.  I remember the night we got home from the hospital and all of Maaike's gear came in the door and I wondered if we would ever find normal and happy again.  I wish that me could see us now, because she would have known that everything was going to be alright.

That first night home we didn't even have a home.  I went to my mother-in-laws and had planned on putting Maaike in a port-a-crib.  When the RT showed up will all the machines he looked at me very lovingly and broke it to me that this was not going to work.  An army of family was instantly mobilized.  One brother-in-law ran to Walmart to buy a crib mattress.  Two others went to a storage unit to find their crib and changing table for us to borrow.  My mother and father-in-law started clearing space for the crib and gear, while the RT started spewing out pressure gauge numbers and temperatures in Celsius.  

With time and patience we have found our system.  Thankfully we are in our own home now and life has settled into our current norm.  Here is what works for us:

1. movable machines

In the beginning Maaike could only tolerate short breaks away from her machines.  In order to help her and myself come out of her room and be more a part of the family we put everything we could on her changing table that we fitted with wheels.  Late one night there was a crash as her machines fell through the thin board shelf of her changing table. the next morning we bought plywood and metal L brackets for a new heavy duty shelf. I later covered that shelf with some laminate stick-on tiles for easy wipe up. Here's how we position it all:

1. humidifier - positioned closest to the bed so we get the most reach with the blue tubing
2. air compressor - turned sideways so that Maaike can't pull out the filters as easy
3. pulse-ox- faces the door so I can see her numbers with only a crack in the door
4. suction-on the bottom shelf so that any residual fluids can drain down
5. ambu bag- I always keep it in this same spot for emergencies
6. oxygen concentrator tubing- the concentrator is the one thing that doesn't fit on the changing table.

2. moving parts

1. a double hook- first it serves to hang the inhalation fluid bag and it also neatly holds the suction catheter (hanging it higher than the suction machine serves two purposes: 1. it allows for any residual fluids to work their way down 2. it is in a handy spot :)
2.  inhalation fluid- it in needs to hang just higher that the humidifier chamber (mine is about a millimeter higher, but it is sucked dry every time) 
3. suction machine- I have it apart from her other machines because for us it is the only one that moves one a regular basis.  I have easy access to it here and don't have to fumble with the other machines.
4. wheels- these were a life saver in the beginning when Maaike was on the machines all day and we would wheel her out for family time, but they continue to serve us now when we travel.  The machine stay on the changing table as we roll them out to the car, drop the whole thing in the back of the minivan, and then roll them right into our room (photos here).

3. the 5th wheel

The poor oxygen concentrater is the only one that gets left out of all the changing table fun.  One, its too big. Two, it generates so much heat that the girl's room was becoming a sauna.  I've attached the tubing and the plug to the door frame with crescent shaped cable hooks so that they don't interfere with the door.  The only down sides are that the noise and vibration of it aren't contained behind a closed door and on occasion the filter on the back goes missing, but on the up side the girls are no longer drenched in sweat so that I have to wash their sheets far less. :)

Organizing Medical Supplies

This post is the first in a three part series on organization.  Some of you will instantly know that traches and organization go hand in hand, or at least that is the goal.  For those of you who are scratching your heads let me explain that every month I get a delivery of roughly 256 medical thingies. That is counting Q-tips, artificial noses, and saline bullets individually, but there are 15 different types of thingies in there.  My system works great for us, it may not for you, but hopefully some idea may be helpful in devising your own strategy. 

My mother-in-law is famous for sharing the adage: "A place for everything and everything in it's place." So here are my places:

1. under crib storage

I built this drawer one late night when my husband was out of town and couldn't see the mess.  I measured the crib size and then made the drawer 4 inches smaller in both directions.  I had the person at Home Depot cut everything for me in the store so I could go home and assemble. Some day I would like to stain it to match the crib, but by the time that happens Maaike will be ready for a bed and then it wont match.  So for future matchiness it is all natural wood. Three points of interest:

1. low profile- if you make one of these I would recommend keeping the height minimal for that it will be versatile for crib or bed.
2. long handle- having a long handle really helps in a one-handed pull out.  All those supplies get heavy and you don't want to accidentally ram it into your crib legs or the wall.  This handle is actually a towel bar from Ikea for $1.99
3. wheels- for an easy glide in and out, wheels are a must, but don't get swivel ones or the drawer will go all crazy like.  I strongly recommend the straight forward and back wheels to ensure a clean roll out every time.

2. storage bins

I always envisioned that I would make some super cute, fun, and colorful canvas totes for my storage bins.  I even went as far as to buy some canvas, but the pink throw-up bins from the hospital do work and will probably always work. Here's what's in mine

1. saline bullets
2. mouth sponges- my favorites are the green Toothetts, but insurance pays for these pink ones
3. trach ties, pulse ox probes, and trach masks
4. artificial noses
5. suction catheters
6. suction catheters
7. inhalation fluid for humidifier
8. portable oxygen

3. the basics close at hand

I saw a blog post sometime, somewhere, that used an over-the-door clear shoe storage sorter for small toys. I'd like to thank whoever that was for this inspiration.  Maaike's changing table is right next to this door so that as I do her trach care, change her diaper, get her dressed, you name it, I've got everything I need within arms reach and ready to go.  Here are my everyday go to's:

1. small lingerie bag for dirty trach ties- I try to use a trach tie 3 times before pitching it and have found that they do much better in the washing machine in a lingerie bag than if I hand wash them. (hang dry)
2. Passy-Muir valve
3. spare traches- I keep them in small Tupperware containers (Ikea) to keep them clean and from being damaged
4. clean trach ties
5. trach tools- pipes cleaners for cleaning, scissors, red permanent marker (for marking suction depth on the catheter)
6. sleeping supplies- trach mask, Posey wrap, elastic wrap to secure Posey wrap and pulse-ox probe
7. sterile Q-tips
8. Snug hug and shoulder roll (I use a swimming noodle cut in half)
9. dental care- pink Toothette sponges, tooth brush, training tooth paste
10. first aid- pediasure mix (for after throwing up), thermometer, infant Tylenol, moisture barrier for stoma
11. sterile water and hydrogen peroxide for trach care
12. hand sanitizer
13. artificial noses
14. essential oils- I use Burt's Bees for after her baths, Doterra's Breath blend on the bottom of her feet and Frankincense mixed with pure coconut oil directly over her cysts 
15. saline bullets
16. sterile water for suctioning
17. hair stuff
18. non petroleum diaper ointments (petroleum and oxygen are combustible) 
19. diapers (I can fit 5 per pouch)
20. shoes!

The next two organization topics will be medical equipment (aka the machines) and medical tasks (the daily trach to-do list).  Questions? Comments? Concerns? Talk to me.

News Interview

One of the things that really surprised me in having a special needs child is the heavy responsibility and even obligation I feel to educate others.  I am sure not every special needs parent feels this and I at times have felt resistant to it.  When Maaike was still struggling and life was full survival I had another special needs parent  encourage me to take my heath care concerns to our state representatives and that maybe I should be the one to "lobby in your state for the rights of these little kids."  At the time I felt resentful.  I battled within myself that just because Maaike came to our home doesn't mean that I have to be the one to change the world.  Then Puj called me.   

Puj was an answer to prayers in so many ways.  It was a miracle for bathing and it gave me the perfect platform to share our story and let someone else do all the work.  Its a product and a company that I believe in and all I had to do was sit in a chair and talk. I felt stronger after that interview.  It was wonderful to be able to literally see how far we had come.  It propelled me to start this blog.

So when a call came from our interventional radiologist asking us to take part in a local interview it felt right.  Still my husband and I poured over the decision before agreeing to take part.  Amazingly there are children coming forward with lymphatic and vascular malformations who have never received treatments or knew that someone could help them.  Sadly some are past the point of response.  So once again the opportunity to educate and hopefully help others fell into our laps.

 

(to watch the interview of us and another LM/VM family click here 

and then select the 10PM Vascular Anomaly Patients)

What's next?  I don't know.  I still don't feel strong enough to march on capital hill, but I appreciate the confidence that other mother has in me and hope to be there some day. And when someone throws out hurtful things about exploiting my child I may roll my eyes, but will walk away unscathed knowing that they have no idea what my life is like and that we will continue to do or not do whatever we feel is best for our family and right and good.  And so we march on.