Let the Adventure Begin!

DRT  My most basic form of communication is with my eyes- open for YES, closed for NO. My best way to communicate is when I am on my eye-gaze computer. But if I am not on my computer, and you need more than yes or no, use the SPELLBOARD.  The colored side faces you.   Important! You only get 3 chances to guess what I need - after that get the spell board. Please don't waste time especially in the middle of the night guessing.  During your counting with the numbers when I close my eyes it means you are on the wrong side. For example when you say 1 and I close my eyes go to number 5.  The following are also some communication shortcuts using my lips and/or eyes- LIP READING Lips open and closed quickly = chapstick  When I chew = that means suction please When I feel pain, I will make an ugly face.  There are a few words that you must learn that I try to do with my mouth. For example, off and up. These require serious lip reading.Unfortunately new people might think it

DRT  How to Do Mouth Suction The Routine Start on either side. Go deep into my cheeks outside my teeth. Do both sides. When I open my mouth go for the roof of my mouth. Never put the wand on my front teeth, go in from either side. I have a chip in my front tooth from the wand. Don’t put it in past the bite marks on the wand. Hold the wand vertical. If you angle the wand it doesn't suck effectively. Here's a picture of wand placement during roof:  I’m having trouble when you first put the wand in my mouth because of my mouth muscles are getting weaker, especially during the end of the day. Sometimes I almost have to teach my mouth muscles how to form a vacuum around the wand. That takes a few seconds. So just put the wand in my mouth towards the roof. Hold it lightly and don’t move it around in my mouth.  I must form a vacuum between my lips and the back of my mouth. When I open my mouth again, go under my tongue, don’t dig deep. That hurts. Just go in a little b

DRT  I would like to start by saying that I’m glad that I made the decision to continue to fight this horrible disease by getting a trach. A few of my friends (PALS-People with ALS) when confronted with the inability to breathe, decide to hang it up. I choose to LIVE! WATER MANAGEMENT Every time you come, do water management on both vent tube at 11 AM and 7 PM. The key points are: Empty both tubes of excess water. Always empty water AWAY from me, NOT into me. Remove clear tube from PEEP valve and drain water into wash cloth. NEVER allow the PEEP valve to get wet.  Separate the white tube from the peep valve. Don’t twist the peep valve. Hold the white tube in two places, up by my belly and down by the peep  valve.  Pull hard on the white tube while holding the other end that will empty the water out. Do it twice.  The blue tube is different. Tap the blue tube starting up at my chest and continue down to the bottom. Never pull the blue tube because of the wires.  Carefully d

DRT  The basis of Don’s Diet is to make everything with Bone Broth and only the best quality organic foods. 7am- BREAKFAST- large shaker 16 oz bone broth 2 Tb warm coconut oil 1 Tb Flax Seed Oil 1 Teas Liquid Multi Vitamins 1 raw chicken or duck Egg 20 grams (1 scoop) Whey 20 grams (1 scoop) Protein powder  2 capsules Butyrate Breakfast Supplements include-  Electrolytes  Probiotics  Herbal laxative  Vitamin B1 (50mg) and B12  Vitamin C (2000mg)  Vitamin D (2000 IU)  Rosemary  A-F Betafood- Vitamin A, B6, and Iodine  Plus prescription Baclofin, Rizuole and Metroprotol 10am- Snack- leftover breakfast     Add 2 scoops Fiber (psyllium husk) Noon- LUNCH- Blend (takes about ½ for lunch) 16 oz Bone Broth 2 Tb Flax Seed Oil 1 Tb Liquid Multi Vitamins 8 oz fish/chicken/meat 1 C cooked green leafy veggies  1/2 bunch Parsley 2 Tb Extra Virgin Oil Olive 2 Tb Lecithin 1 scoop Whey  1 Teas Creatine powder Lunchtime Supplements  Electrolytes  P

DRT   How to Transfer  WHEELCHAIR Hints: Wheelchair should have 4” ROHO cushion. Plus a blue or green chux to protect ROHO if I leak. I have weak stomach muscles, so be sure my arms are always on the arm rests to prevent me from falling forward. It is very painful on my PEG tube when I’m leaning forward unsupported. It's very important to turn the front WC wheels before transfer so you can move the WC with ease.  BED to WHEELCHAIR or SHOWER CHAIR - for my CNA Use the PIVOT DISK for transfer to and from bed. Always transfer me with my shoes or slippers on. With shoe straps behind my ankles. That way I won’t slip off the disk.  If I am shaking help me to put my heels on the disk, that way I am not on the balls of my feet. Push your hands on my knees to make it stop. When you lift me, don’t give me a bear hug, it hurts my PEG tube. Lift me using my rib cage with your arms on my back or under my armpits. NEVER PICK ME UP WITH MY ARMS OR SHOULDERS Pay close attention to w

DRT  ON ARRIVAL TASKS Wash hands at start of visit. Greet Don. Water Management needed? Suction needed? Read the latest reports, cross off your name.  Read and follow the caregivers white board.  Check Current Calendar for your schedule, and update Draft of Next Months Calendar. Does posted Staff Chart have your most current phone number and address? Do you have all of the caregivers phone numbers in your cell  phone?  ROUTINE DUTIES DURING YOUR PA SHIFT- Feed Don food and "meds" (see menu chart in kitchen) Suction and/or burp as needed Assist Don with communication computer set up and use  Important, if Don is in his wheelchair and starts coughing out of control, do the following quickly:  Clamp burp tube  Put shoes on  Raise feet up all the way  Do mouth suction  Driving to doctors, errands, and for outings. Going on walks with Don. Help CNA with transfers, ROM, comfort breaks, and shower as needed. Shower days are Sunday, Wednesday and Frid