Monday, January 18, 2016

Dream a little dream of me...

Last night when I put Tessie to bed and I, ahem, PUT THE OXYGEN ON HER, I looked at her alarms like I always do before leaving her room and noticed that her heart rate was quite elevated. Tessie usually has a higher heart rate than most people but this was high even for her.

"Great, she's coming down with something.", I thought to myself, because for Tess, a higher heart rate is one of the first symptoms something is happening to her.

I stayed up another couple of hours to watch the Democratic debate then checked in on Tess again before going to bed. Heart rate was still too high. And she was sleeping which meant that it should definitely have been lower. A lot lower. Like at least 30 beats per minute lower.

Sigh.

I fell asleep but woke up a few times and made sure I didn't hear any alarms. I knew that if things were getting worse for her, the oxygen alarm wouldn't go off unless she was in big, bad trouble because I had actually PUT THE OXYGEN ON HER like a good mother, but that her heart alarm would go off once it hit 140. It was 130 when I went to bed so I had legit reason to be a little more vigilant.

No alarms.

Well, good. I went back to sleep and then dreamt that Tessie was getting quite sick and that I should have known it was coming because the night before last, Oreo was freaking out over Tessie and trying to get my attention and do something by whimpering and prancing in front of Tess, looking hard at her, then almost stamping her paw at me as if to say, "Come ON, lady! Something's not right with my girl! Do something!" (this part of the dream had actually happened in real life the night before last).

Then, in my dream, Tess had a big seizure. Like the kind of big seizure she used to have a few years ago. Scary big. In my dream I remember thinking, "Oh no! Not you again!", and just being really upset.

Just as I was explaining to Charlie (still in my dream here) about the whole Oreo thing and why I should have known a something was coming, I woke up. I was so relieved to realize the seizure had been a dream but then immediately remembered that her heart rate had been elevated when I went to bed and that she actually could be sick.

I got right up and went to Tess to check on her and her heart rate. It was totally back to normal.

Phew!

But wait. Now I had to puzzle out why it had been so high last night for a while. And why had Oreo acted so bizarrely the night before.

It came to me soon enough.

I assumed that Tess must have been having some type of seizure as she slept. That would explain Oreo and the high heart rate and maybe even my dream of her seizing, because subconsciously I might have had that in the back of my brain all along when I went to bed last night.

But it gets a little more odd here. This morning, as Tess started to watch her movie and I was wasting time on FB, it dawned on me that her breathing sounded weird. Almost like panting. You know, like it would sound if she were having a seizure.

Sure enough, I looked over and my stomach did that old familiar flop it does when Tess is in trouble. I jumped up and took the two steps over to her wheelchair to try to get her attention. No dice. Rigid mouth, clenched fists, dilated pupils, stiffened legs with curled toes, breathing change...all meant one thing.

She was in the middle of a seizure.

And it was the kind of seizure that I hadn't seen in a long time. Like a few years. Like I had dreamt about last night.

Luckily it didn't last as long as the old ones used to but my 'Tessie Radar' is way up and on the lookout. And luckily for me, I know that Oreo's is as well.

As far as the dream goes, I don't know what to make of it but I do know that it is really a weird coincidence.

And hoping I don't have another one like it for a while.

"But in your dreams
whatever they be
dream a little dream of me"
-Ella Fitzgerald 

PS Tess is currently just fine and happily watching Frozen. :)


Thursday, January 14, 2016

Every breath you take...

...and every move you make
Every bond you break, every step you take, I'll be watching you.
-The Police

Such a good song and one that has been stuck in my head (and now yours, you're welcome)  pretty much since Tessie came home from her spinal fusion surgery in November. 

You see, since that surgery, when Tess sleeps at night, her breathing is...weird. Loud. Alarming (literally). 

When we first noticed it, we had the most awesome "Dr. Jen" come check her over because this was something we had just never seen, or heard before, not to mention the oxygen alarms that were blaring about every fifteen minutes all. night. long. I even managed to get it on video so Jen could see and hear for herself the symphony of noises that Tess was making as she slept. 

It was like listening to the worlds most annoying tight rubber band being rubbed one minute then would switch over to what I could only assume was the spirit of a departed truck driver who hadn't slept in days and was using Tess's little body to get some much needed rest. Because there was no way the noises that were coming out of her little mouth could be those of a twelve year old girl.

I mean, people, she was giving her dad a run for the money in what was the worst contest ever created: Who can snore the loudest for the longest period of time. 

Well I am here to tell you that Daddy won the 'longest time event' but my Toodle Bug for sure won the 'loudest and squeakiest' event. 

At any rate, Jen thought all those noises were just as odd as I did and called Tess's pulmonologist in Portland. Since she was still on higher rates of pain meds at the time from her surgery, that was thought to be the culprit because she takes so many meds anyway, that more on top of that was simply depressing her breathing too much. He also suggested we put her on oxygen at night to help her breathe easier.

Well, we did pull her off of the pain meds and she went back to her normal pre-surgery med routine and seemed to be doing better so I didn't bother with the oxygen because she absolutely hates it and I figured it wasn't worth the battle for the smaller amount of snoring and alarms.

Cut to the past two weeks and we are right back to square one. The loud, rumbly, wake herself up with a snort, snore. Then the tight, squeaky rubber band noise kicks in. Then, God help me, the alarms start blaring. For hours. All. night. long. 

Now one would assume that her mother would haul herself up out of bed and go put oxygen on her child.

One would assume wrong.

What this awesome mom does instead is sigh heavily, very martyr like, look in the monitor to see if Tess 'looks' okay, and waits for the alarms to stop which they always do very quickly. Then mommy rolls over and goes back to sleep and starts the process all over again about thirty minutes later. 

Good times. Good times.

I finally have gotten sick enough of the alarms, as well as concerned enough as to why this is all happening again, that I myself called the doc which totally seemed to surprise his receptionist.

Her: "You want to speak with Dr. W?!" 

Me: "Yes, please. Or I can leave a message with you and you can have him call me when he has a free minute."

Her (still not sure how to handle the clearly odd request): "Can I pass you along to the nurse?"

Me: "Only if by nurse you mean the doctor. I need to speak with the doctor myself. Not his nurse."

Her: "Okay, I'll give him the message." (still confused that a parent had the gall to ask to speak directly to the doctor)

Anyhoo, he very nicely called me back the following afternoon and chatted with me at length about what he suspected was going on. He told me that due to Tess's pretty profound scoliosis prior to surgery, muscles that wouldn't normally be needed to help a person breathe had had to step in because the muscles that she should have been using were compromised and not able to work due to the scoliosis and now that she was straight, the breathing muscles had, in a sense, atrophied and needed to build their strength back up and the other muscles were now in different positions and weren't doing the same jobs anymore. So basically, Tess is having to work really, really hard while she sleeps just to breathe. He also made the very good point that our bodies repair and rejuvenate themselves during sleep and she wasn't getting to do that because she was almost working harder during her sleep. Poor kid. 

So he gave me a plan and can you guess what it starts with? 

Anyone? Anyone? Bueller?

Yup. Oxygen! Imagine that!

Plus he is ordering another sleep study for her and he strongly suspects she will test positive for obstructive sleep apnea and will be put on a little bit of bipap at night to help her. 

So that's the latest with the Toodle Bug. 

Oh, and she's getting the oxygen put on now. ;) 

Cheers to a (hopefully, please God) good and restful night's sleep for all of us! 






Thursday, January 7, 2016

Her Person..

Ellie left the island today and flies to London tomorrow.

For almost five whole months.

I had all I could do all morning to not burst into tears in front of her so instead I joked and trounced her and Hunter in one last game of dummy rummy, which I must confess that since I do love to win, was really the best way she could have left me. But then, at the ferry as we said goodbye, I could feel the tears coming so I jokingly grabbed her in one last big hug and said, "I'll never let go, Jack!", which is a Titanic reference and one that we always joke about because let's face it people, there was room for two on that damn door and Rose basically killed Jack out of selfishness. But I digress. I just didn't want to leave her with my tears so I left her with a laugh instead then cried in the van on the ride home. What can I say? I'm not as strong as I pretend and I'm going to miss her.

And then there is Tessie. Last night, Ellie was explaining to her that she was going back to college but that she would be further away and so wouldn't be able to come home at all for quite a long time.

I literally watched Tess's face change from happy to unhappy with furrowed brow and frown as if she were going to cry at any minute, as Ellie was talking.  We finally realized this morning, as Ellie snuggled in with Tessie one last time before she left, that Tess didn't think Ellie was ever coming home. As she and Ellie were laying there, Tess just refused to smile until Ellie hollered to me that she couldn't make Tess happy which is so unusual that I went in to make sure Tess wasn't sick. I then started talking to Tess and said, "Yes, Tessie, Ellie is going away for a while but she IS coming home again!". When I said that Tessie gave out a huge, shaky, sigh and got all happy again. We just have to keep reinforcing to her that Ellie is coming home again. In the meantime,  my heart now hurts not only for myself, but for Tessie as well. Because Ellie is her person. And I am clearly codependent. Anyway, for any Grey's Anatomy fans, you'll get "her person" reference, but for those of you who aren't quite as, well, we'll just say, into, TV as much as I am, here's a few memes that should help explain what I'm talking about:


Replace Cristina with Tess and Meredith with Ellie 



Or if she needed a slumby buddy-you know, something a tad less dramatic but just as important



I'm sure Tessie told this to Ellie today...at least with her heart if not her words






See what I mean?  Perhaps a tad dramatic but that is how having a person feels and Ellie is Tess's person. I'm mama and yes, Tess loves, wants and needs me, especially when her life is scary or she is in pain, but Ellie is her person. There's just no other way to put it. And her person will be gone for five months and she will miss her so so much that my mama's heart breaks for her even as it leaps in joy and happiness for the experiences that Ellie is going to get the chance to have. Because it is going to be such an amazing time in Ellie's life. Of that, I have absolutely no doubt.

Ellie will have her semester abroad with one of her very best friends, Kaitlyn, and another really good friend from Wagner and will get to study at the University of Westminster (which I believe is located near Parliament and Buckingham Palace-eek! Exciting!) in one of the most amazing cities in the world. They are hoping to be able to travel around Europe some during their Spring break while they are there as well. Maybe Ireland, Italy, & France or even just one of those countries would be incredible. It will be an experience she'll never forget and her dad and I are just thrilled she's taken this opportunity and running with it.

And Tessie will get thru it. With facetime and letters, along with a calendar marking off the days until Ellie returns, Tessie will get thru it.

At the end of May, Ellie will come home and Tess will have her person back and all will be right in Tess's world again.

yup.





Her person. 

My world too...