By all indications, it seems we are without a nurse again Saturday night. Un-freaking-believable! Because of this, my plans to see Kari at WVU this weekend and attend the benefit for Ryan are scrubbed. I am so disappointed. On top of this, Sue is angry with me that I’m not going. But… I can’t leave in good conscience. I’m needed here. It’s not fair to leave the burden entirely with her. I have a problem with walking away from a known issue. I’d rather just lean into it and plow through. So, I’ll accept her anger (not to say I like it) knowing it’s done with her best interests in mind.
I did this once before, although I didn’t expect no coverage, and simply can’t when I know she’s without a nurse. She spent the entire next day tired as hell and never really bounced back for a week. In effect, she was as I am now… sluggish and cranky. You know, generally not pleasant to be around.
It’s particularly challenging this week because Sue left this morning (5:00 am) for three days in Atlanta on business. She’ll return home very late Friday night. Then Saturday night it’ll start all over again. It’s the cold truth that we will need to make it through ten days before having a realistic chance of catching up on sleep. It really is too much.
I know I’m on a binge with this whole topic lately. Lack of sleep can do that to a guy.
Ken, I work from 5am til 1pm, so if there’s ever a time you need some help, I can come help directly after work. Even if its for you to take a long nap! I’m not a nurse, however. Just let me know!
This just ticks me off to read your post today. This is inexcusably bad service on the part of this nursing group. I can’t believe with 2 or 3 days notice that they can’t find a substitute nurse for you and Sue. This is just crap.
Ken, I am sorry for the unreliable service you are so dependent on. You, and Ryan, are in our prayers and we ask God to give you the strength to make it through these tough periods. Looking forward to the day when you can report back that you got a solid night of rest.
Hang in there. We’re paryig for you.
That is awful, surely they would have to find a replacement! If i wasn’t working all weekend, I would drive there to help you and be your nurse. Take care! Keeping my fingers crossed for a nurse. SHSP
What a bummer! Praying for a small miracle so you can go to wvu.
I am so annoyed for you. Maybe an ignorant question, but, with this many days notice why can’t the nursing agency find another nurse to cover the shift? Seems like a HUGE flaw in the the home care nursing industry. I would think that there would be a protocol already in place to protect patients and their caretakers from something like this…especially multiple times over! If the answer is that there are not enough nurses to go around to have a protocol such as this, then perhaps Nursing Agencies should limit the number of chronic/long term patients they take on dependant on the number of Nurses they have working for them; or perhaps Agencies should share their patient cases with other Nursing Agencies to help cover any overflow. I’m aware that I’m probably oversimplifying this, but I’m really frustrated that you have to deal with this on top of what is already on your plate. In my opinion, you’re taking on an insurmountable and unjust load by having to step up as Ryan’s Doctor, Nurse and Dad–might I add that even so, you’re doing an over the top, EXEMPLARY job. Having said that, it is only my opinion based on my own experiences, that you have taken on this role, because as his Dad, you see that this is the ONLY way Ryan will receive the very best of care ensuring him every opportunity to recover. Reason being… if his care were left solely at the discretion of the insurance company, you would not be left with a whole lot of viable and/or worthy options. There. I think I covered everything but probably not… 🙂
If anything, I’m praying that by validating your frustrations I’m helping to lift some of it from you. You have enough to contend with already.
In the meantime, please know that I will be praying that you’re provided with some relief (a flipping responsible nurse that shows up) :0 providing Ryan with the care he rightfully deserves and you with the ability to get some sleep and/or restore your spirit.
I will be praying that you’re able to attend this weekend’s benefit in honor of Ryan, while enjoying the company of your daughter, Kari.
If this unfortunate situation remains know that I will be praying for your ability to endure these difficult days… praying for “low key days” with recognition that YOUR “low key days” are high maintenance to most.
And most importantly, as always, I will be praying for Ryan’s continued and complete healing.
With love and in prayer,
Keri, My Frankie and Family
Ken,So sorry to hear this. Hoping and praying one of the nurses that know Ryan will somehow be able to make it. You sure need to relax and get some sleep for a couple of days too. Thinking of you all always, and again ,really wish I was able to help with Ryan. He is a VIP to me and know things will someway get better.. Love Gail
Ken, I’m glad you tell us what’s going on. I too am so very disappointd that there isn’t a nurse available to cover this weekend — I know how much the fundraising event (and being able to see your daughter) meant to you. Not to mention, you really deserve and need a break. I do understand your reluctance to leave Ryan. He is your priority, and you have always put his and your family’s well being over everything else. I am still praying a miracle happens and a nurse becomes available. Please rant as much as you want about this situation. Your strength is an inspiration to others who are in a similar position. If you can power through this, others can find the stamina to make it through too. People do look up to you.
In the dark, I see light, just a hand’s grasp away; day looks stark, but hold on tight, love will find a way.
Hugs, prayers, love always
Paula
So, so sorry. Will be praying for your sustenance and rapprochement between you and Sue. Also, of course, for a smooth weekend for Ryan.
So upset to see this entry…..I hope something works out. A call to tell the agency there is a benefit for Ryan and how can they fix this? My heart feels for you Ken.
Oh wow. Just wow. Silly question, and probably annoying too, have you called the nursing agency. Hoping a nursing miracle pops up……you must be very disappointed. And angry. And sad.
Oh man, I am so sorry to hear this… How disappointing that you’re not able to get away this weekend to spend precious time with Kari and attend Ryan’s benefit. Whether or not you can (or should) go, is there any chance that another nurse can be found to cover that Saturday night shift? You’re right — this is just too much for you and Sue. We are here for you, whatever we can do to help. Please, let us know. In the meantime, we will continue with our love and prayers for you and your family, Ken.