Very, very scary day

[Donna Thomson]

Hi Everyone,
Early this afternoon I received a call from the nurse at Nick's home and apparently he had suffered a bad choking episode. At first he appeared to be alright, but then he turned blue and stopped breathing. They lifted him on to the floor and shaved his chest in a hurry, getting ready to defibrillate when he started breathing again. Ambulance called and he really was out of it after that for a few hours. Anyway, of course i jumped in the car and drove to town (two hours from the cottage to Ottawa) and met the guys at the hospital where the doctor was assessing Nick when I arrived. Long story short, he's fine now and back home. Chest X-ray clear - very lovely and smart young woman filling in today for the regular staff did not not know to put a pillow behind Nick's head when he's eating by mouth (he only eats a tiny amount, mostly he's tube fed). We nearly lost our guy today. I am so grateful he's OK. We are just lucky. Of course I changed the protocols, email alerts, photos on my iPhone to be shared of good head position for eating vs bad head position. Ahhh it's frustrating not being able to just somehow be there for him all the time. Rose, will email my friend at the ADA tomorrow! I hope your sweet Jon is not in too much pain! Love to you all.

[Tamie]

I am so glad the people were on top of it and did the right things for Nicholas. What a scare for you. It is always so hard when you are that far away. Give him a big hug from California!

[Earth Mother 2 Angels]

((((((Donna & Nick))))))

How terrifying! I can imagine how you must have been feeling driving for 2 hours to get to Nick. I'm giving thanks to God as I write this that Nick is all right. So frightening!

Do the regular staff train the fill-in staff? Do they give report to each other during shift changes? I know that information doesn't always get transmitted fully or successfully with this protocol, but it is an important part of shared caregiving to communicate about the patient's specific needs.

Your technologic communication to all involved caregivers is an excellent tool, as long as they regularly check the places where you've posted the information. In addition, face-to-face communication between the caregivers or supervisor of the caregivers (regular of fill in) further reinforces the patient's specific needs and reduces the potential for an error to occur.

Another thought that just popped into my head ~ how about a chart in the kitchen (wherever the food for Nick is kept) indicating feeding protocol for Nick? Or for any resident? The caregiver could check the chart, before feeding Nick, just as a reminder, or in case s/he is a fill-in.

Just thinking of ways to cover all of the bases. I would think that everyone at Nick's home will be advised now about the pillow behind Nick's head for meal times. Sometimes it takes a trauma like this to shake things up, sadly. But this will get them on their toes, I would suspect, and that is a positive result.

Please do not even think about writing to your friend at the ADA. You are on vacation. Vacate. Deep breath. Relax. And thank you for thinking about it for us. Just vacate.

I will keep Nick and you and Jim and Natalie in my prayers as always. May there be no more scary days. Ever.

Love & Light,

Rose

[andromeda31]

OMG how scary!!! So glad he is ok now!!! It's so hard to trust others to do for our kids....but impossible for us to be there 24/7... (((((hugs)))))

Lisa O.

[Donna Thomson]

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Hello dear friends, I'm home now and Nick is sleeping - here are two images that I took and sent to all his caregivers, one with his head tilted slightly back (he will choke) and one with his head tilted down (pillow behind his head - he won't choke). The worker today was a relief worker who had never worked with Nick before and recieved training weeks ago on a day when he didn't eat. sigh. It's always like that, isn't it? Anyway, my boy is alive, Thank God. Thank you all for your support :)

[funnylegs4]

Yikes! That was close! I kind of know how you feel. My friend with CP was physically attacked by a roommate a week and a half ago. He's totally fine now but we both know that if his other roommate hadn't been there he might be dead. Very scary to say the least. I'm so glad Nick is all right!!!!! Thank God!

[Earth Mother 2 Angels]

((((((Donna & Nick))))))

A picture is worth a thousand words! And these pictures say it all!

Perhaps you could print out the photo in an 8 x 10 format, with the words, "Feeding = Pillow," on it and place it in a location, which will be visible to any and all caregivers.

I'm a big fan of consistency of care, which is why I always hope for the same nurses, who've cared for Jon on previous hospital visits, to be assigned to him on his next visit. This last visit was the first time that I heard Jon's nurses tell aides and lift teams, as well as other nurses, "only one pillow and just a slight turn, as he can't tolerate a full turn." As well as other things unique to Jon's care. These were the things that Jim and I have been drilling into these nurses for nearly a decade now. It was comforting to me to know that they get it and are passing it on to others involved in Jon's care.

We used to write instructions on paper towels and paste them over the boys' hospital beds! "Head elevation = 30 degrees." "Hold tube feeding 1 hour before and after Dilantin dose." "Slight turn. Only one pillow." It worked!

Now, we have a white board in the room, where we write our "special notes."

Whatever it takes to grab their attention, we do it.

Because, the fact is, we can't be there every second, and we shouldn't need to be. Nor should you.

Another thought just scampered across my brain ... a caregiving video. A brief, 5 - 10 minutes video on how to care for Nick, starring the handsome and dashing Nicholas! Available to any and all who need that information, and required viewing for anyone providing direct care to Nick. You could actually have some fun with it. Nick already has one film under his belt, as the Ultimate Warrior. Just the highlights of the most important aspects of his care, pulled together in an interesting and entertaining format, might just stick with caregivers, better than words, or even pictures. Just a thought ... mull it or toss it ...

Meanwhile, I'm praying that Nick will be able to make a day trip to the cottage, as I am sure that would be a most wonderful experience for him and all of you. I completely understand your concerns about Nick's pain, and I'm praying specifically about that aspect.

Still giving thanks that Nick is all right ~ and will continue to do so.

Praying for peace and reassurance to surround you ~

Love & Light,

Rose

[andromeda31]

Hi!

I like Rose's idea of a video...I was also going to suggest a binder in his room with photos of proper postioning and other stuff like that. They have that for Caitlin at school...they took pictures of her properly positioned in all her different things (stander, w/c, posey transfer sling, etc) and on each page is the picture with written instructions underneath. They asked my permission to do that and I gave it of course as I thought it was a great idea! They get substitute aides in once in awhile so it's nice for them to have a reference.

Lisa O.