Yes, it has been a while. I’d like to say that I’m sorry, but really I’m not. What I am is tired. Many times I pass by here wanting to put up an update but I just haven’t felt like it. Many times I have thought about it but I just haven’t gotten to it. Until now.
Mommy’s illness continues to progress. She is incapable of moving anything but her eyes and lips reliably. Most of the time she can move other parts of her head but not much. She has lost control of her neck muscles making it impossible for her to hold her head up on her own without supports. She is in a lot of pain and though she tries to deny their use, she needs a fair amount of pain killers to make it through the day. She cannot take anything by mouth and lives off of whatever sustenance we can put into her feeding tube, directly into her stomach. She cannot breath on her own and every breath is provided to her through a tube in her throat by a ventilator. She cannot talk but communicates with us via a computer that is controlled by her eye movements upon which she can type out letters and words and then “speak” them to us; it’s slow but it works.
Through the day. Maybe a good update would be to give you an idea of what our days look like. “Our” means those that you have come to know: Daddy, Mommy, Rebekah and Sarah as well as Jenny, mommy’s cousin who came from Arizona to live with us just as the girls started school in September. Without Jenny we would not have made it this far.
We (usually Jenny) awake at 6:30am to get the girls off to school. Like most families, this is a bit like herding cats, but it usually works. Rebekah gets on the bus at 7:45am and Sarah at 8:15. Immediately after the girls are gone mommy’s treatments begin.
We have to start with Oxycodone because there will be painful movements involved here. All of mommy’s medicines (and they are extreme) are ground up, mixed up and put in a syringe. We then put them down her feeding tube. Then I pull her forward in bed and Jenny tucks a compression vest down her back which wraps around her. After the vest is on we start an Albuterol breathing treatment to break up the crud in her lungs, following by 10 minutes of painful pounding on her chest (the compression vest does this for us) and 10 rounds of being hooked up to a cough assist machine. The cough assist machine hooks to the tube in her throat and forces air in and then sucks (hard) air out, helping us suction out the gunk in her lungs that you and I cough up and clear on our own on a constant basis. After this is done we start her on a bag of food and then some water into her feeding tube. Sometime close to 10:00am this process is done.
From 10:00am until Noon we remain available, listening for an alarm that she can trigger on her computer or a doorbell button that she can, just barely, still trigger by pushing out her chin. When she needs us (usually once or twice) we come running with pain meds, to move her around in bend, suction out her throat or her mouth or ???
At noon the treatment starts all over again and is usually done by 1:30 or so. From then until 4:00pm we listen and wait.
At 3:00pm Sarah comes home (and then Rebekah at 3:45pm) and mommy tries, with the use of her computer, to ask about their day. The girls try and talk with mommy but it is difficult to wait for her to finish questions and they have short attention spans. Mommy does have some phrases pre-programmed to help this.
At 4:00pm the treatments begin all over again. Somewhere after they start, one of us has to make dinner. Some of the time a dinner is brought to us ready to cook or even ready to eat – this is awesome! By 6:00pm the treatments are about done and the girls are getting ready for bed. Kind of a reverse of the morning rat race.
At 8:00pm another treatment and the removing of the compression vest – again very painful.
At 10:00pm the last round of medicines for the night and the changing of the bandages around her throat, tummy tube and catheter that she uses to pee into a bag.
On top of and fitting in between these we have other issues like showers and pottying. Mommy cannot move on her own at all so every movement has to be done by at least two adults. We have to lean her forward and tuck a sling in behind her back, then we lean her back and tuck the leg straps under her legs, all of which is again, very painful. An overhead lift comes in over her and lifts her into the air and slides her off to the side of the bed where we then lower her onto a potty/shower chair (or her wheelchair if we are going out – which is obviously rare) and try and make her comfortable. Whether she is showering or pottying, everything needs to be done by a helper. No matter what we do we have to deal with a vent hose attached to her throat and she can’t get more than about 6 feet from her ventilator at all times.
Throughout the night she will have her lungs periodically fill up with gunk and need suctioned out. Sometimes only once, sometimes a lot more.
Take a moment with me and put yourself in her shoes. Keep in mind that ALS only affects your muscles and not the reality part of your brain. She knows and feels everything that is going on, she just cant make her body do anything no matter how hard she tries. She hears and wants to speak only she can’t. She can cry and does a lot of that too. Put yourself also in Jenny and my shoes. Between working at the home office and taking care of the girls, mommy and the house, this is a 24 hour a day job. It is emotionally as well as physically demanding. It is draining.
We do have a couple of angels that come help us out throughout the week. One day a week we have someone here most of the day to help out with some of these things and let me work or Jenny rest. A couple of nights a week we have a person who will come and spend the night with mommy so that Jenny and I can get a full night sleep – and that is HUGE! Sometimes someone will come and read or just sit and chat or watch a movie with mommy – that too is big as it gets lonely in her ever confining world.
Every day is a challenge, but even more so every day is a blessing that we wouldn’t trade for the world. As you go into your Christmas time please disregard the secular bustle and keep us in mind, praying for us as well as being thankful for all that you have, for all that REALLY matters. Mommy and the Girls at Rebekah's Birthday