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