Thursday, January 31, 2013

Following up

The appointment at Children's went pretty well, all things considered. 

I met with one of the docs who will be a part of Tessie's team for the surgery who handles the muscle/tone issues that kids with CP are known to have. 

A big part of Tessie's pain is coming from muscle spasms. Of course this leads to the question; is it the hip being so out of socket that is causing the spasms, or the spasms that are pulling the hip out of socket? Either way, it really makes no difference because it all leads to the same result. 

Bilateral hip surgery. 

I really like Dr. Q and she was very patient about answering my many questions, especially my concerns regarding the amount of pain Tessie is in, even with attempts already being made at pain management, and then having to listen to my concerns about medicating Tess even more for the pain. She had some ideas on how to better control the pain, one of which includes Botox injections to freeze the muscles that are spasming and thus, help them relax.

I am waiting for Dr. M's (the surgeon) OR (operating room) scheduler to call me with a definite surgery date which will be sometime at the end of April or beginning of May.

Yes, that is way farther out than I would like but Dr. M took quite a bit of time, unscheduled for him-we were not on his books to be seen (yet he came in and sat down to talk to us as if he had all the time in the world-awesome), to explain why.

Basically it is because he is booked already but, he did, very generously, offer to fit Tess in sooner if his scheduler could get OR time in the hospital. He even offered to cancel his clinic if it happened to fall on a day when he had to see patients, in order to accommodate us. That is a big deal because this man is crazy busy and it would really throw a monkey wrench into his regular schedule to do this for us. It is hard to get the OR time however, because it is a long surgery and to get an OR slot that allows for that amount of time is tricky. He also offered to see if one of his colleagues had any time sooner to perform the surgery but I quickly vetoed that. Like I said to him, "As a mom, when you meet a Dr. that you instinctively trust and like, you don't want someone else. Especially for something this huge. And I met you first, you lucky duck!" (yes, I actually said, "lucky duck"). And you know what he responded with (after he laughed)? He said, "I am lucky. It's my privilege to get to help her." And he was just so sincere. I tell you, I love this doctor.  

Then he assured us that if we could not effectively manage her pain, she would be considered an emergency and would get priority. That would mean canceling someone who has been patiently waiting, (like we are now) and taking their slot. Great for us; really, really crappy for someone else and not something I felt was necessary to do to another child who was probably just as uncomfortable as Tess is, with parents just as anxious as Charlie and me. 

So I am good with the plan we have in place. I am very happy with how the appointment went.  I felt that they not only empathized with my frustration at having Tess be in pain, but also that  my opinions and concerns were respected and taken seriously by them. And they were very quick to reassure me that, like me, they don't want her in pain and that they are not trying to put off her surgery. 

Dr. M also made the very good point that he doesn't want to go "barreling" into such a major surgery until everyone (including all the specialists that Tess sees) has had a chance to address any concerns that may have about Tessie undergoing such a major surgery. He wants to be aware of any and all potential problems that could arise and be ready to address them if need be during the operation. 

They actually have a plan and know what they are doing if I just trust them to do it. 

Imagine that. 



I will admit, it did cross my mind that maybe there could be some way that my forehead could accidentally get in the path of that Botox needle...just for a second or two. Or three or four.



Sunday, January 27, 2013

Working some magic

Remember the old Rolaids commercial, "How do you spell relief?"

Well, around here it is spelled A-P-P-O-I-N-T-M-E-N-T!!

That's right, people. After much wheedling, whining and downright persistence in phone calls every day to the nurses and schedulers in the CP Clinic at Children's Hospital (not to mention working a little magic), I managed to get Tessie put into an "emergency slot" so she can be seen. This Wednesday. As in, only three days away!

To quote Tessie's beloved Cowboy Woody from Toy Story, "Yee-haw  Cowboy!!"

Of course now the nerves set in. It's all becoming very real. Tess is going to be having major surgery sometime soon. The brochure from Children's Hospital says that we will most likely not see her until about eight hours after they wheel her in to the OR. EIGHT HOURS! I cannot begin to imagine what that wait is going to feel like. I mean, we've waited for her in surgery before but that was like an hour and a half tops and even that felt like forever.

It's a good thing I am not prone to panicking. Oh, wait...actually, I am. Crap on popsicle stick.

And then there are all the other things that are going on around here. Namely Ellie's basketball team (hopefully) making it to the tournament and the Community play she has a big part in. I am already sweating it out over the scheduling.

As it is, I am going to miss the last home basketball game of the season because it is scheduled for, can you guess? Yup, Wednesday. Sigh.

If only that Time Turner Kris brought me back from Harry Potter Land was real I would be all set.

               Just a few turns back...that's all I would need.

Alas, until I can be magically transported back in time, I will just try to look at the bright side. At least Ellie has another year of playing basketball so it's not like I will never get to see her play in the school gymnasium again and I got the appointment that I was praying for which means I will get to say in person to the very people who need to hear it,

"MY KID IS IN PAIN! NOW HELP HER!"

And if that doesn't work, my niece, Drey, has Voldemort's Wand. I just may need to ask her if I can borrow it for a minute.


"CRUCIO!"










Sunday, January 13, 2013

Grrr

Clearly I have not written a post in a while. It might even be the longest I've ever gone without blogging  since I started nearly three years ago.

I suppose you could call it "writer's block" but that's not exactly it.

The real reason I haven't written any new posts in so long is a bit more complex. And for the sake of honestly here it is...

I didn't want yet another post about how hard things have been with Tessie. I mean, they must all start to sound the same after a while. So instead, I have been patiently waiting for something to write about that would be funny. Light hearted. A little anecdote to maybe make you laugh. Something that I could say to myself, "Aha! This would make a funny post."

And so, my little blog has been very quiet.

The last few weeks have been brutal in regards to Tessie. As in, I want to bawl my eyes out and/or smack-the-ever-loving-crap-out-of-someone, brutal.

Remember a couple of posts ago how I talked about Tess needing bilateral hip surgery sometime in the next six months? Well, the next appointment she has with the Orthopedic Surgeon is not until April and even then it is only a consult, which wouldn't be a big deal except now my little Toodle Bug is in pain. A lot of pain. Wake up in the night, sobbing her little heart out pain. I can actually watch her pupils dilate from it. She cries some during the day as well but it mostly hurts at night. Which makes for long nights and a third person in the bed. Which makes for a tired mama and daddy. And you can imagine how happy being over-tired and over-stressed is making us.

The docs in charge have tweaked her medications a few times to try to control the pain and right now, finally, it seems like it might be working.

But here's my beef. WHY aren't they just scheduling the GD surgery?!?! WHAT reasoning are they using that tells them that it is better to ADD medications and drug the kid up for the next THREE MONTHS AT LEAST rather than deal with the problem?

I just don't get it.

But I will. Because tomorrow I am calling Boston and I refuse to give up until I speak with her surgeon.

No kid deserves to be made to live in pain. Especially pain that the doctors already know needs to be addressed with a major surgery. Especially when the wait for an appointment means three more months of pain and the side effects of the medications used to treat it.

Especially Tessie Toodles.

In the words of her pediatrician, "You don't want to bring mama bear out of the cave."

Well guess what?  Grrr.