Tuesday, April 9, 2013

I want to go to bed

I feel like a kid who is overtired, cranky and whiny. I want to kick my feet and throw myself down on the floor and and cry and basically have the ultimate little kid temper tantrum. Gross, runny, snotty nose included.

But I won't.

Because I have to be a grown up. Whether I like it or not. And right now, I can assure you, I do not like it. Not. one. bit.

In case you couldn't tell, today has really been a poopy one (yes I am purposely using the word poopy because I am still in little kid temper tantrum mode).

My day started with a phone call from Boston telling me that Tess could not get her botox injections due to her recent pneumonia. That's right. I found out TODAY, two days before the appointment, that because Tess had pneumonia within the past six weeks, she can no longer get the Botox injections that she was scheduled to get on Thursday after MONTHS of waiting, not to mention that she was diagnosed with pneumonia ten days ago and they got the doctor's notes in Boston right away so they must have KNOWN, not to mention they have already been rescheduled TWICE and her hip surgeon really wanted her to have it done prior to surgery. And let's not even get started on how it would have drastically helped to decrease the pain that she has been in for the past, oh, I don't know, ten months or so. 

This all led to the conversation of her surgery. "You need to keep her well", the nurse all but scolded me as if I have any real control over aspiration pneumonia. Now I will be a bundle of nerves if someone even sneezes within a five mile radius of Tess. I plan on building her her very own plastic  bubble out of Saran Wrap and Duct tape. Not sure how she will be able to breathe in it but at least no germs can get through if no air can, am I right? Can I get an "Amen!"? 

I'll make sure it's a Toy Story Bubble. Because I am a good mother like that.

Yes, I am kidding. And clearly going insane which I am willing to bet is more fun than being a responsible grown up.

Then there is the issue of one of her feet getting ice cold and turning a lovely, dusky color. How bizarre. No answer as to why this has been happening so a doppler study has been scheduled for both of her legs tomorrow in Boston to make sure her circulation is okay especially given that she has a major surgery coming up. 

Oh, and have I mentioned the small issue of her "slight heart arrhythmia" that was found after her most recent cardiology appointment? No? My bad. Yes the EKG showed a little blip that requires further testing so we just finished up a twenty four hour Holtor Monitor EKG test last night. I am Fed Ex-ing the results tomorrow.  The cardiologist isn't too worried and suspects that, per usual, it's just Tess being Tess.

My poopy day got even poopier when Tess started cycling in and out of seizures around two o'clock and didn't stop, despite all the meds I dumped into her little body, until nearly three. During this time I made a frantic phone call to Boston basically telling them that I would be there tomorrow for a different appointment so PLEASE PLEASE PLEASE fit Tess in for an appointment with her epilepsy specialist!

And like my very own fairy godmother ready to grant my wish, the nurse called me back and said the doctor wanted to fit her in.

One appointment granted.

                             *fairy dust*fairy dust*fairy dust*

Then she ordered more meds for me to give to Tess tonight, a "loading dose" they called it, along with directions to get her off the island if she seizes anymore tonight (uh-huh-no sweat-yeah right) and now we have to take the first boat rather than 8:45 in the morning in order to make it all work.

So for my next wish, Fairy Godmother...

Can today please be over with already? Pretty please with a cherry on top?


                       *fairy dust*fairy dust*fairy dust* 


  1. I'm having a glass or wine or four for you. I love that you were told to keep her well as if you'd never thought of that. I'm so glad you got an appt for tomorrow and I hope you get some helpful answers. Tantrum away - this sounds very much worth it.

  2. You are the most amazing person I know. I am in awe.



  3. OK - I've fallen behind again with all this. So you've already left the island, had appointments and perhaps have gotten those heart test results? Update, please??

    Praying as always....