Looks like I’m right in the middle of another 36 hour shift. Our nurse called out last night to tend to her sick daughter. I can only hope that doesn’t happen again tonight, else I’ll be in for 60 straight hours with Sue out-of-town until tomorrow night.
I’m happy to say Ryan had a good night. He made it as easy on me as possible. That’s my boy! As it turns out, we are roughly an hour ahead of our daily schedule. He is currently finishing percussion therapy in his bed. I should have him up and about a little after 6:00 AM. I plan on opening the blinds to see if we might get favorable weather to catch the sunrise together. We have a great view, as it rises over the lake. Some day I’ll need to build a deck off the kitchen…
It always helps when the sun is up. In many ways. Today it will wash the tiredness out of me… for a while. But, I know, eventually I’ll be dragging. Not sure when or how I figured it out, but I can put myself into “the zone”. No kidding. I can run on autopilot. It’s almost hypnotic. I suppose all married men can function on this level to some degree. 🙂
Our call with IBRF went well. What’s nice is we learned the team will be visiting us toward the end of the month. This is the time when they’ll repeat their tests (e.g., qEEG, BIS, etc) and see what progress was made, if any. I both look forward to and dread this at the same time.
Ken, I hope you keep your strength and can catch some cat naps to get by. Sorry your nurse is not always reliable. Hang in there, Ryan is blessed to have you as his father. Praying to God for Ryan and you.
Hope you get some rest soon, Ken!!
Still here…still thinking…always sending positive energy Ryan’s way…
In my heart!!!
Ken isn’t that frustrating when the nurse’s call in, do you have an alternate nursing care provider that you can call as a backup by any chance?? I visited my Dad around 11:15 am today (he is 96 years old), and the woman whom we pay to stay from 9 am to noon was no where to be found, so I call her she says she had to leave to take care of a Dr. appt for herself, so I said could you maybe call me first? ack!! and the unmitigated nerve of the woman to think that is ok anyway, well the point is YOU are phenomenal for being so reliable and present for your dear son Ryan, just incredible your dedication!
I’m sorry you had to be up all night. I hope tonight is better. Wishing Sue a safe trip home tomorrow, hopefully by train? Sending strong thoughts your way…..
We have six private-pay aides for my mom and also use an agency. In addition, we have a couple of back-up folks we can call. All this, and we still have occasional call-offs. I’d better not get started about the support that caregivers (don’t) get.
With you in spirit.
Glad to hear that the call went well. Hope you Both have a Great Day!
Wishing you sunshine, warmth, rest, and prayers. Even on the worst of days, remember the SON is always shining on you and your family. I’m praying you and Ryan have a great day together. Hang in there, Ken. You are awesome!
Ken…hope you soon are able to sleep. You continue to amaze me. I have nothing but the utmost admiration and praise for you. I am still here. Sending you love and a hug today and every day.
Ken, thank God you are who you are — I mean, you are one strong human being. And Ryan — like Father, like Son. I think this siuation with the nurses needs some tweaking. I know it’s difficult to find people you trust and feel comfortable with. I think the agency, however, needs to have qualified back up nurses available for you. The agency needs to know that if a nurse doesn’t show up, this will have a serious negative impact on you — and that is not right, nor is it fair to you or to Ryan. The agency also needs to know that sending one of the “naughty nurses” over is unacceptable too. I know there are skilled, responsible nurses out there — it’s the agency’s job to find them, this is what they are getting paid for. Does anyone else out there have experience with this — how can this situation be remedied? Ken doesn’t get enough sleep as it is; having to go through this is not okay. I’m not blaming the nurses at all, I’m saying the agency that employs them needs to be prepared to handle these “call outs.” Basically I’m going to be praying for you all day, Ken — especially now that the sky has turned gray. Ah, what a blessing you have to be able to see the sun rise over the lake — that has always been a dream of mine, to live where I can watch the sun rise above the water, be it a lake, an ocean or a bay. And yes, a deck would be a wonderful thing for you and Ryan. It would be so nice for you and Ryan to be able to sit in the privacy of your backyard and just enjoy nature. On a separate note, if you need us to bring lunch/dinner for the IBRF team’s visit let us know. Meanwhile, I’m going to go through my house for donations for the sale. I heard a celebrity is coming to town — from Oprah’s OWN channel no less. Hey Ken, do you know how much your family is loved? “Winning.”
Hi Lady, if Oprah is anyway involved, only good can happen that woman has more power and $$$$ than the U.S. Gov’t!!
Let me know if I can bring you a Starbucks Latte or Cappuccino. I’d be more than happy to drop one off to you.
Starbuck’s home delivery — what a concept!!
That is very kind of you to offer Ken coffee, I think he needs some coffee and redbull combined 😀
I’m glad the call with IBRF went well. I agree, we get pretty sunrises, I can catch a good glimpse as i walk through my upstairs hall to start waking the troops in the morning and i always stop and marvel for a few before hurrying on with “hurrying up” to get ready and get everyone off to school. Sometimes it’s nice to just take a minute to appreciate the beauty in something as simple as the sun rising to greet the day. You probably “get that” more than most.
Caffeine is probably in the plans today. Make yours a double.
I hope the nurse shows, we will keep our fingers crossed for you.
Have a relaxing day, Ken.
XOXOXOXOXOXO
Checkin’ on you this morning! Is it possible to have a back-up nurse? Probably not, or he/she would have been called. I feel for you, Ken, and hope with lots of caffeine you can get through the day. Caffeine isn’t a bad thing unless we’re talking 2500+ mg. at a time that is in some of those tiny little bottles that are showing up on store shelves — scary! I’ll be thinking about you today and checkin,’ checkin,’ waiting for the expected rain and flooding. I don’t know how much more the ground can take! Our streams are almost up to the banks already. Our rainfall stats should be about up to snuff after this one! Still here, hoping, praying and with you in thought. Love
Dear Ken…Glad Ryan had a good night and sure hope you can get some rest today…….those are long working hours~. Also happy the call from IBRF went well and things hopefully will get going soon … Praying all is peaceful and quiet today for you both. SHSP. God bless. Gail