Again, just a day late! There seems to be a running theme this week…
Friday was both fabulous and not-so-fabulous. I started out the morning with a raging migraine, and Kaylen started out the day just raging. Which made for a kind of crazy combo. Our nurse also decided to just rearrange her schedule in her own head, so she come flying in at 8:40, proclaims to me ‘I’m early for once, yay!!!", and then proceeds to act as if she wasn’t actually 40 minutes late. I know she was late because she was supposed to work four hours at our house and leave at NOON…but she just made everyone else fit into her schedule like it was no big thing. I’m only venting about this now because the nursing situation has been driving me even more up a wall than normal. I am not sure how it appears to people who don’t need or use nurses inside their homes to help with their medically complex kids. Like maybe I shouldn’t complain? I try not to. We have had some amazingly awesome nurses and are very lucky to be able to have the extra help with Kendall and the ability to keep her “healthy” by not schlepping her everywhere the rest of us need to schlep to, allowing her body to not expend energy it doesn’t have by running errands in the 100+degree days, having someone help us monitor all the crazy things her body does so we know when to take action and when to let it run its course. And truly, I’m not complaining about this nurse. She did a great job with kendall, for the most part. But sometimes, when you have a personality conflict with someone, it becomes very hard to have that person in your home all day every day. Especially when both personalities are quite strong, and neither is going to cave to the other.
I won’t get into a whole lot of details – but I’ll say that there have been some challenging moments over the past few weeks. It’s not a bad thing – people just sometimes aren’t meant to work together in close quarters. Not every nurse fits with every family. I have ALWAYS tried my hardest to make sure that I am not just cancelling a nurse based on some initial quirks (theirs or mine!) that can be resolved with compromise. But when things start coming into play that involve taking things out of my home, using a large quantity of things that are ours, and/or –ESPECIALLY THIS – compromising the care of our child, then it’s time to move on. This has been such an emotionally draining past few days for me. And I know that the vagueness of this is making it a hard story to follow, but I need to get it out somewhere. This is what is going on with me right now, so it’s going in the blog right now. I hate hate hate feeling like i’ve caused someone undue pain or stress. I know I talk a big game about kicking baby doclings in the shins and such – but really, having to “fire” someone from our case has never been easy. I put up with a LOT of stuff, and i’ve had this confirmed from our nursing case manager – i’ve put up with a LOT in this instance. Still, I can’t help but feel more than a little horrible about the whole situation. I wish her the best of luck finding a position that can suit her and her skill set. She CAN be a good nurse for someone. I hope she is able to find placement elsewhere soon.
And there, that’s about all I have to say about that.
It’s going to be a crazy week, or possibly two weeks, until we get some more coverage in. But we are blessed that it is “do-able”. I don’t think it’s easy to explain how a kid who “looks so good” as Kendall can require so much help to stay that way. Unless you have watched her go into and back out of a crazy “cycle” with your own eyes, you just don’t get it. Every one of our nurses has had to have their “trial by fire” of thinking why does this kid need help? And right on cue, Kendall will prove it. But right now she is in a pretty good upswing, so i’m hopeful that the next couple weeks won’t be TOO crazy. Although given that it just took me almost 2 hours to give her a bath and change all her dressings/get her meds done for the morning….yeah. it’s gonna be a long couple of weeks. But we’ll be ok. I know we are actually very lucky that Kendall is doing as well as she is, and I’m not complaining about that. Hopefully Kendall pushes through some of the “craziness” her body is trying to throw, and it doesn’t turn into anything we have to actually worry about. It’s just been one of those weeks I guess.
A week where having friends who can cheer you up with a crazy text, or a bright purple sparkly sweatshirt for your kid, or just laughing about crazy TV shows together, can make all the difference in the world. It was overall a really good week. I had an awesome dinner and talk with a good friend (who also happens to blog and whose name is Tara – we’re a match made in heaven I tell ya!), had Ben home to help with the girls all week and had a lot of fun watching stupid movies with him every night, and just got a few procrastinationy things checked off my list. (If you don’t know what procrastinationy means, then you are obviously not a procrastinator. Congratulations to you and here’s your gold star of overachieverness.)
So onward we trek.
Sunday starts Mito Awareness Week. You may remember this from last year, because it was the first time Ben blogged here on Terra Talking. I’m trying to convince him to do it this year too. (He might need a little encouragement from you all to get there – leave a comment here or on the blog facebook page to tell him you’d love to hear this thoughts again!) We will be kicking it off by attending the Chicago area Energy for Life walk to raise awareness. Hopefully Kendall will behave for the whole thing as I will be there as “official photographer”! We don’t have an official team this year (again) – but maybe next year I will have my act together so we can walk with others who support us on this journey, as so many of you do. I asked on the facebook page for any questions you had regarding mito that I can answer this week – and i’ll ask the same thing here. You can, again, leave it here in a comment or on the facebook page. I’d LOVE to hear from you – no question is too stupid or out of bounds. I may not have answers for all of them, but let me know what you want to hear more about!
I hope you all had Fabulous Fridays too! And that you all have a wonderful weekend! Thanks for being a part of what puts a smile on my face every day – just by being you, by being here, by reading along and letting me know you’re there!