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.


  1. I'm happy to hear things went so well.

    And I completely understand waiting for the surgeon you like to treat Tess. I remember that the heart surgeon we had selected for Lily and prayed over and met with just happened to be featured on a television special 2 weeks before he was to operate on my Bird. When it came on my TV, the first thing they showed was him sitting at his kitchen table eating with his family and joking with his teenagers. I just burst into tears and cried the whole way through the show. He was exactly the kind of surgeon I wanted for Lily's heart but he was also exactly the kind of PERSON I wanted taking care of my baby girl. Clicking with a doctor is a BIG DEAL.

    Yes, the surgery seems like a good ways off but if you're happy, I'm happy. And having a plan is always a good thing. :)

    Also? Maybe you SHOULD check out that Botox before Tess has any. I mean, just to be on the safe side and such.... You want to make sure it's really good Botox and all. The things we mamas are willing to do for our babies... :)

  2. Exactly...I should probably take the first Botox know, just to be sure it's safe for The Toodle Bug. :)