Thursday, April 28, 2016

The Special Needs life, Game of Thrones style...


For years my dad has tried to get me to watch The Game of Thrones and I just didn't think it was something I'd enjoy. It sounded too intense, too violent, too everything I tend to dislike in my TV viewing. Then Blake and Ellie joined the bandwagon and my interest peaked a little. They both loved it but still, I was hesitant. Finally, when the excitement for the new season on pretty much every social media platform, as well as within my own family hit a fever pitch, I caved.

But as Frank Sinatra sang, "I did it my way."

I read the books first.

You see, anyone who knows me knows I am a bookaholic. Cannot get enough books. Ever. I even bought a shirt that reads, and I quote,

"My Patronus is a bookworm."

oh yeah, I totally own this most awesome shirt.


If you can't place where the word Patronus comes from, here's a hint, start reading Harry Potter, stat.

But I digress.

I LOVE this series. L. O. V. E. it. The word obsessed comes to mind.

So the other night as I was reading the report of Tess's initial trial with an eye gaze talking device after a most successful second trip to Boston for Tess to work with it again at the Augmentative and alternative communication (AAC) clinic, my mind flashed back to the report that the Maine AAC "guru" had sent us after he had evaluated her for the same program last October. Let's just say that his report was less than enthusiastic about her cognitive abilities and overall level of awareness (a totally opposite report than what I was reading from the Boston clinic-yet another reason we go to Boston instead of staying in-State-not to mention that it didn't jive at all with the smart kid that I know),  and I immediately thought of a quote from my new fave series, The Game of Thrones, which then led me to placing other famous/infamous GoT quotes with other situations I tend to find myself in within this special needs journey.

Here's my special needs life summed up in Game of Thrones quotes:


What I want to tell the AAC "guru" from Maine:



What I think after IEP meetings:



My reaction when the school fails to follow thru on IEP promises:




How I feel when other kids hit big milestones (walking, talking, sports, school plays) that Tess won't:



When I'm trying to make myself be brave when Tess is sick or having seizures:



And again, oftentimes a daily struggle of bravery and faith vs. fear:



How I feel when making major decisions for Tess:




Any time the mama bear in me has to come out:





How I feel when I fire someone from Tess's "team".




                                                 
And lastly, because we live where we live and I dread the rough ferry weather. My thoughts at the end of every September:



And there you have it. My special needs life summed up in Game of Thrones memes. I would apologize to those of you who are reading this that aren't at all familiar with the show except I'm not sorry. I just love it too much. And I did sort of warn you.

Obsessed. Remember? 

Saturday, April 9, 2016

Catching up...

Hold crap on a cracker! It's been three months since I've written a blog post!

I guess time flies and all that.

Let's see...when I last left you way back in January, Tess was having difficulty at night with her breathing as well has having an increase in seizure activity.

Three months later and we're in the same exact place except things are rapidly escalating. And bonus, getting any rest at night, just...no. It's not in the cards and hasn't been for a while. Toodle Bug's alarms are literally screaming at least twice an hour every single night. Sometimes it's her oxygen alarm, sometimes her heart rate alarm. So it's just been a barrel of laughs here at the ol' Reidy Homestead. Because nothing makes you feel like laughing more than fear mixed with lack of sleep.

Tessie has been officially diagnosed with Severe Obstructive Sleep Apnea and it was noted on her report that she is having as many as one hundred forty three episodes per night. Yes, you read that correctly, on average, 143 times a night she has an apneic episode and her oxygen drops down to the low eighties (and yes, she has her mask oxygen and it's dumping some much needed o2 into her but it sometimes isn't enough even with that to keep her o2 levels up) , her heart rate and breathing spikes due to the amount of hard work her little body is doing to simply breathe, and the alarms scream.

Oh, and the dog whines. This past week especially. Coincidentally this past week has been the worst one yet as far as Tess's apnea goes. Ya think she's onto something? And Oreo doesn't whine with the alarms. No, it's during the silence. So, really, very very little sleep for me lately. Charlie meanwhile hears no alarms, no dog whining. Sleeping like a baby as I go into full on martyr mode with a dash of the Little Red Hen thrown in for good measure. "Fine! I'll just do it myself!".


Side note: can you guess what Charlie DOES hear? Anyone? Anyone? Bueller?

If you guessed "Joanna's bitching and moaning", DING! DING! DING! You got it!

But I digress.

One night, after my third time down to check on her and readjust her oxygen mask, I had just gotten back into bed we the alarms rang out. I did make Charlie get up then to deal with it. He came back to bed and pretty soon, more alarms. What the what?! I looked in the baby monitor and her mask was on. I just couldn't figure out why she was alarming so bad with oxygen on. Even the dog was whining. Cut to the next morning when I go in to check on Tess and see that the tubing running from the oxygen mask is hooked up to....wait for it.....NOTHING. It had fallen off the oxygen concentrator onto the floor, and in our exhaustion in the night, we'd never noticed.

Holy Morons, Batman! Yup, we're idiots. Or just really really sleep deprived. I'll let you decide.


Tess is scheduled for a bronchoscopy test in a couple of weeks to see if they can find a reason for the obstruction and hoping that it will be something a minor procedure can fix. Otherwise, more breathing equipment will be coming. Ugh.


And just for fun Tess decided to totally freak me, and a few other people completely out yesterday while she was at school.

As I was dropping off Tess in the morning, I noticed Oreo alerting. Well, Oreo alerts A LOT so I told Tess's nurse just to be a little extra vigilant and off I went. A few hours later the nurse called from school concerned that Tess was very sleepy, hard to wake up, and that Oreo just wouldn't stop alerting.

Hmmm...mildly concerning but we agreed that she would just keep an eye on Tess and call me right away if anything else happened. Not thirty minutes later the phone rang again. I picked up expecting the nurse and got the Principle requesting that I come right to school because the nurse wanted me to come check on Tess.

Naturally  I wasted no time in getting there and found them in the Principles office. The nurse looked upset and the Principe seemed quite concerned. Tess looked ok. Not great but not bad. Then they told me what had happened.

They had managed to wake Tess up and were sitting in the cafeteria during lunch and Tess went from totally awake to totally asleep in the snap of a finger. When they tried to wake her, she was hard to wake up and once awake, pretty out of it. This was also apparently what she had done a little earlier in the morning.

We agreed I'd take her home and the nurse rode in the car with me so I wouldn't have to be alone with Tess. The Principle sent someone to my house to pick up the nurse once Tess got settled. And on the way home, I got to see for myself what they had been talking about and let me tell you, allllll the bad and scary thoughts went thru my mind when I saw that. SUDEP. Cardiac issue. Some type of new Seizure. Sudden drop in blood pressure. Lack of oxygen. All of the above. I just didn't know. all I  did know was that it wasn't right. And I don't know how to explain why is felt so wrong except to say a mama knows her kid and literally has a physical response in her own body when their kid is in any kind of trouble. Needless to say, my whole body responded.

We got Tess into her bed and by this point, she seemed pretty happy again and quite pleased to have gotten to come home, lay in bed, and, gasp, even get her movie! She does crack me up even while she's in the middle of giving me a heart attack.

I spoke with her pediatrician that night and told him all of my worries about her sleep apnea, seizures, and those two weird "sleep/fainting" episodes at school. He didn't like it and wanted to see her but also understood my reluctance to bring her over only to have her totally rebound and be like nothing is wrong, doc. Just my crazy mama. Because she's been known to do that to me many a time. So we compromised and agreed I'd bring her to see him on Sunday if she had a bad weekend or any more of those weird episodes.  He also told me to call her pulmonologist on Monday to tell him how bad her sleep apnea has been and to try to push up the testing if possible or at least get her some help for her ragged nighttime breathing and not to wait two more weeks for something to help her. I did make the mistake of asking him if I should be very worried and he told me I should be "concerned". And me being me, just about shrieked at him, "That's not what I wanted from you! You were supposed to tell me I was overreacting!"

I know, he's so lucky to get me as a mom to have to deal with on a regular basis. I'm sure he just counts his lucky stars every night for that.


As usual our phone call ended with us both agreeing that Tessie was pulling a Tessie and then he laughingly said, "This is what my girlfriend likes to do. She'll go along pretty good for a while and then decide she wants to shake things up and throws a bunch of issues our way just to keep us on our toes."

Truer words were never spoken.



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...





Monday, November 16, 2015

She survived!!!

Hello my friends! When I last left I was freaking out over the fact that Tess's spinal fusion surgery was only twelve days away.

We are now fourteen days POST-OP and all I can really think to say is....

SHE SURVIVED!!

I know, dramatic. But seriously, the hubs and I were unimaginably scared that she would either die on the table or from a post-op pneumonia. So much so that we weren't even sharing with each other how truly scared we were. When we got home the hubs looked at me and said, "I was about 65% sure she was going to die. I feel like I can breathe again.". I looked back at him and replied, "I was 75% sure she was going to die. No joke. I can't believe this is behind us." Because when you live with a fear that big for as long as we have (a little over a year), it consumes your every waking, and sleeping, thought. Yes, we had willingly signed her up for this but only because we basically had no choice. When the doctor looks you in the eye and tells you your child will literally suffocate herself due to the scoliosis and the spinal fusion is the lesser of the two evils, you listen and you listen good.

But as I was saying....SHE SURVIVED!!!!  And we don't have to keep thinking and obsessing over it. Huzzah!

Since Tess needed to be at the hospital by 6:00am the day of surgery, the hubs, Toots and I stayed in Boston the night before. Unfortunately the room I had booked weeks in advance was for only one double bed. For three people and a large dog. Oops.

The hubs took the hit and slept on the cot while Tess and I got to snuggle in the comfy bed. Around two in the morning I heard a loud crash as the hubs swore loudly and the dog jumped about four feet. Being the super concerned wife that I am I asked him in my most annoyed voice, "What are you doing?!?!".  I thought his answer was a little dramatic: "Getting tossed around and puked out of this God**** cot!".

Whaaa??

Apparently the hubs heard the call of nature and as he was getting out of the cot that was literally wedged between the bed and the bureau, his leg got caught between the two so he had to shift his weight and use his opposite hand to push down on the cot to get enough leverage to get out of his predicament. But when he put his hand down, the weight of it flipped the other end of it up and towards the hubs who then got folded up into the cot that was clearly trying to eat him, and only when it had decided he wasn't so tasty, puked him back out onto the floor and landed on top of him.

He. was. pissed.

I rolled over and went back to sleep. What can I say. I'm a good wife. I woke up around four to him literally throwing the cot into the hallway. He was still swearing.

And so our saga had begun.

We got to the the pre-op room after checking in at the hospital the next morning and right before taking Tess to surgery the OR nurse asked us why Tess was there (as a requirement to prove we understood everything). I had been doing absolutely fine until that moment. As I started to say that Tess was there for spinal fusion surgery, I burst into tears and could barely get it out. Let's just say that the OR team was kind but pretty firm about me not going to the OR with Tess. In the words of the anesthesiologist, "We don't need two patients."

I fully agreed and away Tess went as the hubs and I got the heck outta that hospital and went about three hundred feet down the road to our hotel to wait.

As my FB friends can attest, it was a very long and scary day. When we finally got to see Tessie she was swollen from being face down for so long and she looked like she had been beaten because they had to put her in a Halo traction device to keep her in exact alignment for the surgery. She was also still intubated which totally freaked me out. Because of the breathing tube, she was heavily sedated and the ICU nurses told us we should go to the hotel to sleep for the night because she wouldn't wake up and they would call us immediately if anything happened. We were so exhausted from the wait that we agreed.

It wasn't until late the following afternoon that she could be extubated. There were times during the day that she needed to be suctioned with the breathing tube in and she would panic, which was just heartbreaking to see. I have no words to describe it. I just felt so helpless watching her. Trying to tell her she was safe and we were there but knowing she was scared. It left me feeling panicked as well. So when the time came to extubate her I asked the respiratory therapist if people often panicked and was told that it does happen. I looked at the hubs and told him, "I can't watch this. I just can't. Are you okay to stay with her so I can leave the room?". He told me he was fine and I could leave for a minute to get some air. I took the dog out. I know my limits.


This about killed me to see

daddy and Oreo giving loves and reassurance


She did fine after that and since the hubs and I were taking turns spending the night with her, and I was going to the hotel that night, I left around seven and she was doing great. Cut to the next morning and I find out that she had had a collapsed lung and pulmonary effusion in the night and the room had been full of people and xray machines and she was now on cpap to help re-inflate her lung. I was just convinced that this was it. That what we had been dreading was about to happen.

I should never underestimate my Toodle Bug. She rallied as only she can and continued to improve every day. I know I've said it a million times but that kid is an absolute warrior.

Despite the drama and stress, there were a few funny little things that happened during our time there.

On day two of Tess's ICU stay I decided she needed these two huge Frozen balloons from the hospital gift shop. I didn't even factor in that I had to actually carry them thru the hospital to get them to her. Bad move on my part. I had basically gotten them down the stairs and thru the huge lobby without too much drama and was just getting onto the elevator when it happened. Olaf crashed right into some poor woman's face. Hard. I was mortified because I still didn't have very good control over the other balloon and was trying to wrangle Olaf back in to submission. "I'm so sorry!" I yelled in her general direction. (the balloons were too big for me to see around). Everyone in the elevator got a good laugh out of it, including the woman who got face punched. She even said that some girl was going to be very happy with those balloons. "Yeah, but not you!" I replied. God Bless her, she just laughed some more.


Elsa is ready to Let it Go and whack someone

who knew innocent Olaf was really a fighter at heart?

See the TV and toy stand? I just wanted a visual of how big these balloons really were!

Then there was the butter incident. The hubs had been raving about the cafe's incredible french toast and how I should try it. He went on and on about it. I finally agreed and told him that when he went to the cafe to get it, to not forget the butter. Well, you would have thought I had asked him to go looking for a severed head.

 "Butter? I don't think they have butter."

 By this point we had been together for about ten straight days in pretty stressful circumstances so our patience was running pretty low.

"Of course they have butter, Charlie! They're a freakin' cafeteria! They have butter so just get me some!".

"It's a pretty healthy cafeteria.", he responded.

Oh. My. God.

"Charlie, they have got butter. I just know it. The same way that I know I'm in Hell right now!".

"But I don't know where it is."

 "Are you kidding me right now!?! Do not say the word butter to me again." And then thru gritted teeth, "Just make sure you bring me back some!"

I got the butter. Hah!

Ellie came for the weekend and she spent one night with the hubs at the hotel and one night with me. Let's just say, we had a little adventure. It started with my first ever Uber ride with promises from Ellie how it was so easy and convenient and so much better than a taxi. I'm just going to make this short and sweet and tell you nothing about it was easy or convenient. Add to it a dog who gets carsick easily and was panting and burping during the fifteen minute drive to the hotel with Ellie looking panicked and me reassuring her that the dog would be fine and the driver asking, "Is your dog OK?" made for an awesome Uber ride. Yeah, good times. Good times. But at last we made it and had a good laugh over it with Ellie confiding to me that had the dog actually puked in the car she was totally prepared to give the driver five dollars as an apology. Five one dollar bills. Five crumpled, stinky, been all over NYC and Boston, one dollar bills. Because you know, nothing says, "Sorry for the dog puking all over your nice car like five ones". God love her for thinking of it though.

Then the next morning she set off the fire alarm with the steam from her shower. Oh yes she did. Us Reidy women, we like to keep people on their toes.

Ah well, the laughs were worth it.


At any rate, this was a much longer blog post than I had originally intended so sorry about that. But what can I say, I still am on that natural high provided by the fact that...

SHE SURVIVED!!!




Wednesday, October 21, 2015

Where we're at...

So it's about twelve days until Tess's spinal fusion surgery.

Gulp.

I keep thinking about that moment when they will wheel her away from me and take her to the OR. How I'm going to be sending my happy, giggly, trusting little girl into a place where they are going to slice her back open and, when she wakes up (God willing she handles the actual surgery okay) she will be in major pain and could have other problems. I don't want her to think her dad and I let someone purposely hurt her, so, knowing that Tess is a very smart little girl, I am going to take the time to gently explain to her what is going to happen and that she will hurt for a little while but that she will feel so much better when she heals up. Better than she has felt in a very long time because her lungs will be fully opened up rather than misshapen and sort of crushed like her left one is now. Plus she will be able to work her body in other ways so much more efficiently because she won't be spending all of her strength just trying to remain upright. I pray she takes that information in and understands that sometimes we have to hurt before we can heal and that it's because we love her so, so much, that we are having her go through all of this.

Oh the guilt of knowing in my heart that she absolutely needs this surgery but also knowing I am going to send her to be hurt in order to have her heal. It's a very squirmy feeling. That's the best way I can describe. Like something is squirming around in my heart and squeezing it.

We took her to Boston Children's Hospital last week for her final pre-op appointments. There were a few more hoops to jump through and they really wanted her to see her epileptologist because her seizures have been increasing in frequency and strength. They want her going into surgery as medically stable as possible and an increase in seizure activity does not meet that criteria. Her doc (whom I just love) sat with us for about an hour and, after hearing about all of the changes including one particularly scary day when Tess was at school and Oreo was alerting like crazy and whimpering and basically not wanting Tess to be taken anywhere to the point where her nurse called me and asked me to come to school only to realize that yes, something wasn't right. Tess was...off. There's no other way to describe it. I thought she had probably been having some new, weird type of seizure based on the nurse's description of what had happened and then Tess did it again and I saw for myself why she (and Oreo) had been worried. It was just bazaar so when I told her doc all about it she worried that maybe Tess had had a "syncope" episode and promptly ordered and EKG to make sure her heart was working ok. Tess always has a tachy heart rate and it can jump around pretty quickly but the doc thought that whatever Tess had done that day in school, it didn't sound like a seizure.

Then she brought up something that, in the five or six years that she has been treating Tess she has never brought up before...

SUDEP    (Sudden Unexpected Death in Epilepsy)

Well, yeehaw cowboy.

Of course I had heard of it but what I really wanted to know was why was she bringing this up now? What had triggered her need to lead us down this road at this time?

As it turns out, there were several reasons.

First, Tess still has an intractable seizure disorder meaning her seizures are not fully controlled through medication. So. much. medication.

Second, Tess is getting older and apparently that increases the risk of SUDEP.

And lastly, Tess has other neurological issues which also increases the risk.

Then she asked us if Tess was monitored throughout the night. I said yes and she was very relieved. She was even more relieved to know that Oreo slept with Tess every night as well. I told her that if for some reason the monitor didn't let us know Tess was in major trouble, I felt very confident that Oreo would and she agreed. Then I made the mistake of assuming that that meant Tess was sort of protected from SUDEP because of these alarm systems we had in place. She very gently told me that when someone passes from SUDEP it happens very quickly and they are just gone and, even if a parent, nurse, etc, is right there, the person is usually already gone and can't be brought back and the doctors are still all trying to figure out why. Then there was this little gem...SUDEP rarely happens during a seizure like you would expect it to. It often happen a little while after a seizure. The brain just sort of throws a switch and says, "I'm done" (my wording based on her explanation, not hers).

Ain't that just a kick in the chops?! Because you know, we don't have just quite enough to worry about. *snort*

But I will say that, after a lot of tears and prayers,  I am at total peace now with her having the surgery. No matter the outcome. And as for the SUDEP, I refuse to spend too much energy worrying about that. To me, it's an, "It is what it is" type of thing plus I keep hearing the doctor tell me, "...and most times, there's not a damn thing anyone could have done to stop it.", which in a weird way, brings it's own sense of peace.

So I guess this is where we're at right now. Big worries, big surgeries, and one little girl in the middle of it all.

And what a little girl. Am I right or am I right? ;) <3 p="">