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....


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!".


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...


Wednesday, October 21, 2015

Where we're at...

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


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 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="">

Sunday, October 4, 2015

A (very public) Thank You Note...

Yesterday, the hubby came into the house carrying a cute little gift bag.

 "Tessie's got a present!", he called out before bringing it over to her to open. Naturally I was super curious because it wasn't her birthday so I couldn't think of who or why someone would leave a present for Tessie sitting in the front of Charlie's truck.

The hubs could tell that I really wanted to open, I mean HELP TESS open it so he handed it over as I, uh, WE, dug in. First, the note (I am not going to share everything she wrote but the front of the card was too cute not to share:

the "an old" part that Sam added was too cute

It was from one of Tess's teachers from several years ago. A lady who, whether Tess was actually in her grade or not, has ALWAYS made an extra effort to make Tess not only feel included in school, but more importantly, WANTED. She's had a baby within the last year or so and thus has taken a couple of years off, but she is an incredible teacher. The type any parent is so grateful to have for their child.

But I digress.

After showing, then reading, the note to Tessie, we pulled the present out of the bag. Here it is:

a closer look at the saying

I mean, how AWESOME is that shirt?! I seriously couldn't believe it (even went into Nana Belle mode there for a second) because the saying on that shirt is the one I always apply to Tessie. It's the tag line to this blog for crying out loud (which I'm sure is why Sam thought of Toodle Bug when she saw it) but still....thinking of a kid is one thing; taking the time and expense to actually order it for that child is quite another. And's Tess's new favorite color...ELSA BLUE!

And with Tess's spinal fusion only three weeks away, I am constantly reminding myself of that saying. It's become a sort of mantra when I go into those moments of fear. So when I saw that shirt yesterday it was like a sign, and it could not have come at a better time.

Having said that,  I want to take a minute to send out a very public "Thank You".

Dear Sam and Jayda,

Thank you so much for the unexpected, but absolutely perfect in every way, gift that you left for Tess yesterday.

Thank you for thinking of her.

Thank you for the beautiful reminder that so many people keep her in their thoughts and prayers.

Thank you for taking the stress, fear and exhaustion from having a sick kid for the past ten days and instead, throw a bright ray of sunshine our way with your kind gesture.

Tess's spinal fusion surgery is only a few weeks away now and I am living with a lot of fear and anxiety because of it. Thank you for taking my most favorite phrase for Toodle Bug and sending it to her just exactly when I needed that reminder.

Thank you for telling me you and your family are sending her positive thoughts for her surgery. It really does help to know that other people care.

To you it may have been a small gesture but to me, it means so much more that I can say.

Thank you.

XOXO Tessie and Fam.

PS The shirt is the perfect size and I am saving it for her to wear into the hospital the morning of her surgery. It's like her very own battle armor. We are going in there ready to be FIERCE!

PPS I very much hope you don't mind such a public Thank You. It was just too sweet and perfect not to share.  :)

Wednesday, September 2, 2015

Take that!

I got a call at the end of last week that made my blood boil.

The surgery scheduler for the doc who is going to be performing Tess's spinal fusion surgery told me that she needed to reschedule Tess's surgery date.

The date that had been put in the book last April and was now less than four weeks away.

The date that we have been trying to mentally and emotionally prepare ourselves for since we finally faced our fears and agreed that this MAJOR surgery was Tess's best, and only option, despite the many scary things that could happen to her as a result of having it.

The date that we planned nursing schedules around, work schedules around, and had booked hotel rooms around.

And what really threw me over the edge was the reason for the reschedule; the doctor has decided to go to a conference.

I. can't. even.

Well, after ranting and raving on facebook about it and getting  some much needed support from my FB peeps (thank you all very much by the way),  I called Patient Relations at BCH and left a detailed message about my unhappiness. Then, when the hubs came in thru the door, I started to rant all over again with no doubt he would be in full agreement.

Ask me how that worked out for me.

He was, as usual, the voice of calm and reason. God, I hate that sometimes. He was all zen about it and was listing off the positives like it would give the bone infusion meds more time to work and that you don't want a doc operating on your kid when their mind is elsewhere and you've pissed them off by calling in the big guns to try to get your point made that you are unhappy with them, etc., etc.


So I did what all good wives do. I started in on him and why was he defending this jerk of a doctor who was putting a conference ahead of patients' lives and why could he not just back me up on this and see my reasoning and how could he possibly think this was okay to do to people and on and on I went as only I can when I'm good and revved up.

Then I really showed him by leaving him all alone on the deck to watch the sunset by himself. In peace and quiet.

Take that, mister man!

So I went to bed and said a little prayer for some peace and guidance.

Thankfully, God must have taken pity on me because I woke up with a totally different attitude about the whole thing. I decided to trust that there is a reason this was happening and, don't tell Charlie, but agreed with him that we probably shouldn't tick off the man who was going to slice into our child by filing a formal complaint. Besides, the bottom line was, nothing I did was going to actually help the situation, yet it could make it tense and awkward. Not something I needed to add to an already overstressed plate.

And when I checked FB this morning, one of the first things I saw was this:

 and this:

I took them as good signs that my new attitude about it all was a good thing.

So when Patient Relations called me back first thing this morning, I told them to just forget I called. They assured me that I had every reason to feel frustrated and offered to hook us up with a different surgeon and/or go speak with the surgeon on our behalf to explain our frustrations but I said no thanks. We would just plan on the new surgery date and deal with it.

I then told the hubs when he came home for lunch that I was not going to complain to BCH because it just wasn't worth it for Tess or us.

His response: "So you actually really do agree with all of my reasons to just leave it alone and think I am right?!?!"

I very quietly and grudgingly muttered, "Yes.", then caught a glimpse of what looked like a very smug and satisfied expression.

"Don't get used to it, pal.", is what I wanted to say. Instead I went in the other room to leave him in peace to eat his lunch.

Take that, mister man! ;)

Thursday, August 13, 2015

That Awkward Moment...

...when you need to use the restroom at the hospital where your child is receiving an IV infusion and you knock gently on the unit's bathroom door and even more gently whisper, "Hello?", and when you get no response you are convinced you hear voices so you proceed back to your child's infusion room to wait a bit longer rather than lurk outside the bathroom door like some sort of weird creeper but you really need to pee so you decide that enough times has passed to try again even though only about sixty seconds have passed so you yet again go through the polite bathroom motions of knocking and question-y whispering as though you're getting sworn into some sort of secret society only this time when no one answers you realize it's either embarrass yourself by walking in on someone or embarrass yourself by wetting your pants so you bravely push open the door while trying to sound apologetic yet friendly at the same time as you start to say, "Anyone in here?", only to realize that not only is there no one there, it is a multi-stall bathroom and you could have gone in the first time around without knocking on the door.

...when you realize that the hotel you "karate chopped" your way into by "naming your own price" is, in fact, quite fancy, and you need to tip three different people just to get from your car to your room, and while waiting for the bellman to arrive to take the luggage (which in your case consists of one rolly suitcase and multiple tote bags filled with things like diapers and oxygen bottles along with dog food and an Adidas duffle bag-because we're super fancy like that) from the valet,  you ask him where you might be able to take your dog to the bathroom and when he tells you there is a park right outside across the street you nod knowingly (because your are putting on your very best 'oh yes, I stay at nice hotels allllll the time and thus will act extra sophisticated and self assured), thank him, and then proceed to go in the wrong direction and end up outside on the opposite side of said fancy hotel and when, in desperation, you figure it's Boston so maybe they consider concrete areas to be a "park" you take your dog over to pee only to realize the next morning when the valet takes you to your car on the "right" side of the building that there was a park with grass all along and you had had your dog just let it go in a pretty nice sitting area where dogs are most definitely not welcome to go least according to the sign I later spied.

...when you finish up with the infusion appointment and triumphantly post a Facebook status about it only to check into your next appointment to find there is still another one right after it and you have no idea with whom or why. In fact, you're not even entirely sure who the appointment you knew you had is with or why but you keep repeating the word 'Physiatrist" almost like a mantra to your confused husband so you can feel superior that at least you know why your child has an appointment while silently throwing up prayers that you are right so you don't have to admit to him that you are, in fact, as clueless as he is.

...when you meet a friendly lady in the hallway on the way to your appointment room and she is super nice and very chatty and tells you her name (which you immediately forget) and you still don't know who she is but she informs you that an emergency has just popped up but she will be right back and will definitely not make you late for your other appointment (that you didn't know you had until then) so you go in and wait for this mystery appointment to take place.

...when the resident comes in and takes down all of your child's history and through vague questions, because God forbid you sound as stupid as you clearly are, you determine that this is the resident for the person you are about to see and you start to feel pretty smug about your detective skills but then the mystery hallway lady comes in and and the resident leaves without really talking to this lady but says she'll be back and you still aren't sure why your child is seeing this hallway lady so you once again ever so cleverly (at least in your own mind) tip toe through a minefield of vague questions to try to figure out what it is exactly that this person does in the hospital you ask if she can help you stay on the Complex Care Services team because in your infinite wisdom and deductive prowess you have determined that they are a nurse who is there to help coordinate care for the upcoming spinal surgery. Then you start gush about how awesome your child's CCS pediatrician is and you just love her and have such a great parent/doctor relationship with but then she interrupts you to say that actually she is your child's developmental pediatrician on the CCS team and the doctor you have been asking to stay in touch with and have been gushing about for the past five minutes moved out of State quite some time ago so you desperately try to back peddle into safer conversational waters and come up with a gem like: "So I guess what I'm trying to say is that we don't want to lose you!", even though you literally just met and could not repeat this person's name back to them if your life depended on it. Also, turns out that this appointment that you had no idea was even happening was a very important once as it is the over-arching, t's crossed and i's dotted PRE-OP appointment for your child's spinal fusion surgery.

...when the last doctor you see for the day actually is the physiatrist, because gosh darn it, you knew that your kid had an appointment with a physiatrist because you are a good mother like that (not so much), and part way through chatting with that doctor, in walks the resident who you thought was the resident for the developmental doctor who you originally that was a nurse and you realize that she was the physiatrist's resident all along so you keep up with the charade that you do in fact have your sh*t together even though it must be abundantly clear to anyone that has spoken with you that afternoon that you don't.

...when you realize that this post is basically a bunch of run-on sentences with very poor grammatical structure and you're just too tired from pretending that you have a clue to even care.

#awksauce #pasttensepresenttensenotense  #Tessisstillalivenothankstoherparents #ihatehashtags

Sunday, August 9, 2015

It takes a village...

...or at least a couple of strong boys willing to help.

Last weekend Charlie finally got to cash in on his Christmas present from Blake and Ellie when they all went away for the weekend to a camp on a lake.

Fishing, games, boat rides, kayaking and all without any of the usual interruptions. Just Charlie, Blake and Ellie for some father/daughter quality time. To steal a line from Martha Stewart, "It's a good thing."

The problem with all of them being gone at the same time is that it leaves just the Toodle Bug and me.

Home. Alone.

And for those who do not know already, I can't lift her myself due to her size and my terrible, horrible, sucky, stupid, fibromyalgia which, as an added bonus on top of the daily chronic pain, causes acute muscle spasms in my back when I over exert myself.

So yeah, knowing that I was all alone with a kid who may need to be lifted out of her wheelchair for something as simple as a diaper change, to something as serious as a seizure, left me feeling rather stressed.

Enter Bobby and Hunter. Literally.

For those who don't know (though most do), Bobby is Blake's boyfriend and Hunter is Ellie's.

Late morning on day one, as I smelled a familiar odor in the air swirling about Tessie, I began to wonder how I was going to get the poor kid into a clean diaper. It seriously stinks (pun intended) to know that she is stuck sitting in something that has to be uncomfortable and can cause other issues (skin breakdown is a real issue for kids who don't move much and add a dirty diaper into the mix and you up the ante considerably on getting problems) all because I couldn't move her myself.

I was starting to feel like the worst mother in the world when, to my ever so happy surprise, in strolled Bobby. He had just gotten in from haul and even before going home to shower, he stopped by to see if Tess needed to be moved. Now that's a good guy.

Bobby got Tess on her bed so I could change her and when she was decent for boys' eyes again, he came back in her room to put her into bed for her afternoon nap. When I told him I thought I would most likely have help getting her back up, he said he would stop by in a couple of hours anyway, just to be sure.

But a couple of hours later, in walked Hunter. Again, just checking to see if Tess needed to be moved. Again, good guy. Plus, yes, she did need to be moved. So Hunter got her back in her wheelchair with plenty of assurances to me that he would be around and to just call if I needed him to come back to put her back in bed for the night (but Bobby had already said he would do that so Hunter got the night off).  Bobby came just after Hunter had left to be sure Tess had gotten out of bed from her nap.

The rest of the weekend went much the same way with the boys either just showing up at the right time or with me sending them an SOS on Facebook to which their immediate response would be, "No problem, I'm coming."

Basically, those two boys kept Tess's life running just as it usually does, just because they knew help would be needed and because they knew I was worried about being home alone with her.

Good. Guys.

Not to mention,  Tess got the thrill of being carried around by her sisters' boyfriends. Trust me when I tell you, she just LOVES when that happens.

I'm just thankful they were willing villagers last weekend.

Bobby cruising Tess around the house 

And Hunter doing the same thing

Monday, July 27, 2015

Potayto, Potahto....

The other day I got a phone call from Tessie's "boyfriend"...aka Dr. Stephenson. He has been helping me to fight against the State to get in-home nursing reinstated for Tess because, per usual, the State was actually trying to deny us yet again.

In fact, when the nurse who works for the State called to tell me why they were denying, I quickly reminded them that since we had last had nursing Tess has become more medically compromised and their policies hadn't changed so they couldn't deny us. They still told me "no".  I then reminded them that the last time the State had tried to take away nursing hours I had called the Governor's office and threatened to bring Tess to his home with a sign that read, "My Governor does not care about me" attached to her wheelchair and invite the media. When the nurse replied, "That doesn't frighten me.", I quickly responded with, "I'm not telling you this to frighten you. I'm telling you this just to give you fair warning of you you are dealing with, and trust me, I will fight this as far and as long as I have to and do whatever I need to do in order to win." Good times. Good times.

But I digress.

Dr. Stephenson had written a letter to the doctor in charge at the State level on Tess's behalf as well as called him several times (with no answer or return calls) to rattle his cage because he was so appalled that the State had the gall to try to deny Tess nursing care. Long story (sorry!) short, his letter did the trick and we got all the nursing hours we requested.


Anyway, as I was talking with Dr. S, he wanted to hear about how Tess has been doing because he hasn't seen her in his office in a while. I told him that I thought her seizures were increasing, most likely as a side effect of puberty, and then went on to tell him about her having a cluster of small seizures around 10pm the night before and how a few hours later, Tess's 02 dropped down to 86% and I had to work a little to get it back up into the 90's. I told him that I repositioned her, suctioned her and...wait for it...did chest compressions to help her to breathe better.

He quickly interrupted me at that point and said, "Wait up, wait up. You had to do CHEST COMPRESSIONS on her?!?!".

It took me a few seconds to work out why he was sounding so shocked and frankly, a little freaked out. Then it hit me...Yup, I had actually used the words chest compressions when I meant to say chest therapy, which is basically using your hand to pound on her chest and lungs to move around the gunk in there, as opposed to say, oh, performing CPR, which is what I had said I did.

I laughed and quickly corrected myself as he laughed with me and said, "Now Mama Reidy, I know you are super comfortable doing a lot of scary stuff alone with Tess but I really would think that you'd be a little bit more, well, excitable, when telling me about it if you'd had to perform chest compressions. Also,  I hope you'd at least give me a phone call!" (he was joking...he knows me well enough to know that I would be a total basket case if any sort of chest compressions were involved.)

We laughed a little more over my stupid, and very dramatic blunder and I told him, "What can I say? We haven't had nursing help in ten months and I. AM. TIRED."

He very nicely let me off the hook for being such a drama queen with my story and I hung up feeling just a teensy bit like an idiot.

But an idiot who can still laugh at herself.


Meh, Potayto, Potahto..... ;)