Wednesday, June 3, 2020

No "Right" Decision...

I debated about whether or not to share what's been going on the past couple of weeks on this blog but I feel like, especially for those in my VH Community that have supported us with our decision to bring Tess to Scarborough to attend the Morrison Center for school, this is the place to put it on the table.

Long story short...

We're bringing Tess home. At least for this year.

The backstory begins and ends with Covid-19. Stupid, dumb, scary, life altering, life threatening covid-19.

The Morrison Center opened their school up this week to students again. They operate all year long due to the high needs of their students and they're a very small school so can more easily put into practice CDC guidelines for maintaining health and safety for their students. And it was my intention to send Tess this week when they opened back up.

Then Tess and I had a tele-health visit with her pulmonologist who works at Maine Med and just so happens to also be working with covid patients. When I mentioned to him that Tess's school was reopening, his facial reaction betrayed him before he could even say anything. I could tell he was very surprised to hear this (not a good surprise) and when I went on to ask if he thought it was okay for Tess to return to school if all the CDC guidelines were in place, his immediate response was a very emphatic, NO.

NO, it was not a good idea to have Tess return to school. NO, there was no way to make it safe enough for her and NO, he will most likely not be supporting her returning to school any time in the near future...including in the Fall.

He went on to show me statistics and charts of how covid is trending in the country, in the state, and even in each county and what he expected to come given what information he had.

Honestly, I had become a little numb to the covid fear and had even convinced myself that Tess should return to school so she could have some normalcy in her life again. This "safer at home" lifestyle is not really new to us, but the level it has reached is, and Tess has had some negative effects from it. Increased anxiety and increased severity of seizure activity to name a couple. Not to mention she's not getting in person therapies; it's all done by us now with online guidance from her therapists. For those reasons, I had convinced myself that maybe it would be okay to send her and that the benefits might outweigh the risks given heightened safety measures the school was taking.

Speaking with the doctor was basically the same as having cold water splashed on my face. It woke me up. I was no longer numb to the fear. It became crystal clear that Tess's risk for getting covid was so high that there was no way that the benefits of going back to school outweighed the risks.

I thought about continuing distance learning and realized that I could also do that from home and not just here in Scarborough, so I asked the doctor if he thought I should just keep on keeping on here until it was safe for her to finally get back to school in person and where she is close to the hospital and all of her medical care, or, if I should take her home to Vinalhaven where the likelihood of her catching the virus would drop dramatically but she was farther from the major medical help she sometimes requires.  Honestly, I was expecting him to say stay in Scarborough.

He didn't.

He said he thought we should take her home to Vinalhaven and get her out of Cumberland County where her risk for covid is comparatively so much higher. I then asked him about Tess catching the virus on the island vs. catching it in Scarborough where I could immediately get her to Maine Med. He said that this virus would most likely be so devastating to Tess that he felt very sure it wouldn't make any difference where she caught it, the outcome would be the same no matter what... and that outcome would be terrible. He felt like Tess's best chance to survive the virus would be to take her where we can keep her more isolated and safe. "Take her home" were is exact words.

He wasn't filled with alarm or fear or being dramatic in the slightest. In fact, he was very calm and even laughed and told me that if he could take his two healthy boys and go to VH, he'd be gone. He was only sort of joking. And that's what got me the most. His calmness and basically just, stating the facts ma'm, attitude.

Like I said, cold water on my face but the wakeup call I needed.

I talked to her home health nurses and another one of her specialists who all agreed that taking her out of Cumberland County and home to Vinalhaven was the best thing we could do for her given the information we have.

I've cried and prayed and gone back and forth and agonized about what the "right" decision is for Tess. She loses so much by not returning to school in person, and technically speaking, this is her Senior year and I wanted it to look a lot different for her. But, alas, I am not Queen of the Universe and cannot control a worldwide pandemic, so I will do the thing I always do when it comes to Tess, try to make the best choice for her and pray I don't make the wrong one.

Home Sweet Home it is then.

I've spoken with the Vinalhaven school and told them our plans. Tess will still be a student at Morrison but will continue with distance learning until we, and her doctors, feel like it's appropriate to return. And right now, there's no way to know when that will be.

Given that, even though we didn't have to, we've opted to terminate our lease early and give up our rental in Scarborough.  Sometimes, just because you can do something, in this case having the VH school continue to pay rent until we can come back with Tess, doesn't mean you should do it. You've got to be able to look at yourself in the mirror and know that what you're doing is something your conscience can live with. In this instance, ours couldn't live with continuing to have the school pay rent while we're on the island with no idea of when it will be safe to return to Scarborough.

My heart hurts for Tess and everything this move forces her to lose, but today, during her zoom speech therapy,  her therapist asked her if she was excited to be going back home to Vinalhaven and she immediately used her talker to say, "Yeah" multiple times which makes my heart hurt a little less.


And given how unbelievably homesick I've been the past few years,  if you asked me if I was excited to be going home to Vinalhaven I would say, "Yeah!" multiple times as well.

I don't know what Tess's future holds but we'll do what we always do and take it day by day and continue to hope that the decisions we are making for her are the "right" ones...even when it feels like there's no "right" one to be made.

In the meantime, look out VH, we're comin' home!



Tuesday, April 28, 2020

The Queen and the Little Prince

Well hello there! It's been a hot minute since I last wrote anything here but what better time than during a worldwide pandemic?!

There's a lot to get to, not the least of which is that two years ago this April, the hubs fell off our daughter's roof of the house he was building for her and broke three vertebrae in his neck and then the following April (last year), Tess was in the hospital fighting for her life with a superbug pneumonia and came so close to dying that the doctors came in on a Sunday to talk to us about what the coming week would look like and try to prepare us to say goodbye to her by the end of it.

Spoiler Alert for those of you who may still be readers but aren't family/friends of ours, she defied all odds and lived!!!

But since it's been so long since I've written anything, and let's face it, the world is a bit of a scary place right now,  let's leave the scary parts for another time and start with the good, shall we?

Good thing number one: Our eldest daughter, Blake, got married last March (2019) in Punta Cana and the hubs and I even managed to finagle our ever faithful She-She (nurse Sheila) into staying with Tess here at home so that we could go!

Huzzah!

It was a super fun trip and a good time was had by all. We spent about five days in gorgeous weather at a resort on the beach, and even went on a party catamaran to go snorkeling and meet up with other party people at a sandbar with a dj to dance and drink in the tropical waters.

Wedding party catamaran cruise.


Party Sandbar



Walking her down the aisle.



Found a way to have Tess be in the sisters photo!



So. much. fun.

Good news number two was when said daughter's hubby called me one evening in August to proudly inform me that I was going to become a grandmother in about nine months!

WHAAAAAAAAA??? I'm too young! I don't knit....or sew...or crochet...and I swear like a pirate. Not exactly grandmother material.

But I digress.

I was super excited and the time flew by and here's where it really gets good. We told Tessie she was going to be an Aunt! She was most appropriately impressed with this new status in life and confidently told us that Blake was having a girl whenever we asked her.

Turns out Tess is not the best prognosticator and at Blake's twenty week ultrasound, we broke the news to Tess that she was not having a niece, but rather a nephew! Wouldn't that be fun?!

Cut to Tess telling anyone and everyone (using her eye gaze communication device):

"I don't like that."

Well gee, kid, don't sugarcoat it.

Tess has spent the past four months repeatedly finding the button on her talker that says something along the lines of, "My sister Blake got married! I wore a pretty robe. I have some exciting news! I'm going to be an Auntie! Blake is going to have a baby boy.", then immediately going from that to the button that says, "I don't like it!".

When pressed about what she didn't like, it was confirmed that my little Queen did not want Blake to have a boy and steadfastly remained insistently sour about it for the rest of Blake's pregnancy. We figured that surely once the baby was born and she saw him, she would fall in line like the rest of us and just not be able to resist him and all his baby boy cuteness.

Dare to dream you daydream believer.

Gavin Charles made his grand entrance into the world late last week and it's safe to say that Tess had not changed her mind about not liking a boy.

Thankfully, Blake and Bobby were having the baby near where I am so decided to social distance with us here after discussing all of the island factors with her midwives so we have been so lucky to actually get to spend a little time with Gavin after he was born as well since they didn't want them going straight back to the island after he was born.

Naturally we're all madly in love and he is the most perfect, alert, strong, and smart baby in the history of the world and all the things that family's feel about their own babies that everyone else rolls their eyes at.

*Just to be clear, we're right though; He's perfection* ;)

I mean, come on. I just can't even. He's too perfect.. 
So alert. Such wisdom in those eyes. (I don't care who rolls their eyes and groans at my Mimi bragging ;) )




Then we made our way with him to Tess. She very grudgingly looked at him.

Yes, yes, there he is. I see him. Now take him and go!

Hoping I'll take him away.


We asked her if she wanted to hold him. She rolled her eyes.

We insistently put him in her arms (sort of) and to say she was unimpressed would be a gross understatement.

No. Just...no. 


No cute and heart meltingly perfect "Tess meeting her nephew" photos for this kid. Nope. No way. Not a chance. Get this kid away from me were the moments we managed to capture.

And when she saw Ellie, her Superlove holding him??!! The shade that kid threw could cool the nation.

What a proud Auntie should look like.


We hoped a good night's sleep might improve her...we'll just call it...attitude...about her nephew.

We are wonderfully dumb at times, aren't we?

By late the next afternoon there was a small thaw starting to happen. Her Superlove snuggled on the couch with her and then we tentatively had them both hold Gavin together and Tess even managed to smile.


Okay, well this isn't so bad maybe. 



Bump bada baaa!

And by the time Blake took him to her, a teensy bit of interest could be detected.


Honestly, Oreo has been way more interested in Baby G than Tess has.


Baby steps, people.

And this morning Blake took him in to see Tess, aka Aunt T, while she was still in her happy place, otherwise known as her bed, and Tess let him lie next to her and even looked at him and smiled!

Aunt T and Baby G. 


Well yee haw, cowboy!

When my dad and Ann called and I told them about Tess's attitude towards her perfect little nephew, my dad summed it up best when he said, "She knows she's not the queen anymore and doesn't like it."

Well, let's be real here, she still is the Queen but there's a new and very popular little Prince in town and she's not loving sharing the spotlight...especially with a BOY! Sheesh!

Long live the Queen...

Found a way to sneak in this pic of her epic Game of Thrones Mother of Dragons Halloween costume. 






Friday, April 26, 2019

I'm not givin' up....

I can't write about the past two weeks with Tess. I just can't. It was unimaginable hell at the time and I'm still sort of reeling from it all.

The best I can do to try to explain what the past two weeks have been like is this video. I don't normally share such personal pictures of Tess in distress but this is real life and it isn't always smiles and fun and what I would like everyone to believe on Facebook.

This is life with a medically fragile child who came within inches of losing her life last week to a pneumonia.



It's also her fight song. Her fight to get back to us. And thank God she's a Warrior.

Thank God.


Sunday, November 11, 2018

When Tin meets Yin...

In August my back spasmed worse than it had in years. I mean, I was quite literally down and out. And with only a mere four days until I was going to be able to scratch an item off of my bucket list by seeing Billy Joel at Fenway Park, I was in a real pickle.

Out of desperation I did a google search of DOs (Doctor of Osteopathy) in my area, found one who's website I didn't hate, and made my desperate plea to PLEASE GET ME IN SOON BECAUSE I HURT!!! The good doctor had just had a cancellation and told me to come in the next day for treatment.

Long story short, she helped me out and even got me out of pain enough to go see Billy Joel. Yay! I have been going to see her almost weekly ever since. It helps calm my fibromyalgia pain to a more manageable dull roar because my body responds really well to OMT treatments and honestly, I just get a kick out of the doctor. She does some energy healing work along with the traditional OMT stuff and, since I am more of a, well let's just say... traditional... girl,  the new age energy work stuff makes me chuckle.

But I have to say that I've even brought Tess to her and have even had her go back about once a month (and just to let you know what kind of person she is, she doesn't take Tess's insurance and knows we can't afford her fee without insurance so helps Tess free of charge). Tess likes the OMT treatments but you can see her really relax with the energy work. I don't know what to tell you. I was skeptical of the energy healing stuff but between Tess and myself, I have to admit that there's something to be said for it. The OMT stuff is where it's at though. If you've never been to a DO for an OMT treatment, GO! You'll thank me.

Anyway, I digress.

The good doctor talked me into going to my very first yin yoga class because she said my body and mind was in dire need of help (ya think??) in combatting the physical pain and mental/emotional stress in my life. After much back and forth, I finally agreed after basically begging Ellie to come with me, much like Linus's support blanket. I didn't want to go in alone and look like an idiot without someone who I could look over at and laugh with.

The reason that I knew I would look ridiculous trying to do any type of yoga is because I don't bend.

At all. Think of the Tin Man BEFORE Dorothy has oiled him up. I'm just a little less flexible than that.

My fibromyalgia pain severely limits my movements and flexibility which is in direct contrast to any yoga that I had ever seen. Nevertheless, my doc said this yoga was for people like me so I sucked up my pride, grabbed Ellie (and borrowed one of her yoga mats), and hit the yoga studio one Tuesday morning.

And just to clarify for those not as yoga savvy as myself (snort), my yoga instructor describes her yin yoga class as, "A quiet chance to REST. We will be guided safely through a series of specific postures to increase joint mobility and flexibility, reduce chronic pain and create a sense of peace and well being. There are fewer poses per class. Each pose is held for approximately 3-5 minutes allowing you to gently stretch your deep connective tissue and settle into relaxation. This is a class for healing of many physical conditions and illnesses and deep therapeutic shift in your body and your life. It is the perfect complement to the ”yang” or more active practices like Ashtanga yoga, vinyasa yoga and our active lives."-Penny Kusum, so you can see it's nothing too strenuous.

Unless you're the tin man. Which I repeat, I am.

Honest to God, I was so nervous about the yoga that I had to keep using the bathroom prior to class. I joked with Ellie that she needed to set her intention before starting and then when she threw it back at me I replied with, "My intention is to not crap my pants. Anything else will just be gravy at this point."

And so we began by sitting crosslegged at which point I immediately needed help with a bolster so I could sit up straight yet wouldn't tip over  No. Joke.

We then moved into some "deer" or something like that poses and I needed blocks. Then more blocks. And a blanket.

As I tried to look around without getting caught looking, because you're supposed to keep your eyes on your own mat, I saw everyone, and I'm talking some women much older than me, easily doing these gentle poses. And of course Ellie was like a freakin' pretzel and I could hear her giggling softly as I clumsily and noisily reached for more and more aids to help me in my quest to JUST SIT ON THE FLOOR. As I looked back to my own mat all I could see was what basically amounted to a fortress made of my bolsters, blocks and blankets. You want to talk about feeling stupid and out of place?? Baby, I can tell you some stories!

Then, god love the instructor, I hear her say, "Just because you can easily do yoga poses does not make you a better person."

Well, Here! Here!

But then I hear her say, "Try to soften every part of your body as you relax into the pose." She then lists off all the places to soften "including your face" and it's at this point I realize that I have now put all the effort of trying to hold my pose into my face. I swear to god she must be noticing this and is talking to me. (not too self-conscious, am I?) So I panic and start mentally yelling at myself to relax my face. Relax my face! And the more I try to relax it the more tight it starts to feel. As my face starts to soften (I did it!), I feel my arm start to shake because I have now transferred all of my face stress to my arm. And on and on it goes until the hour is mercifully up and we can leave, yoga mat and pride in hand.

I am proud to say that I kept going back even when Ellie couldn't and even though I feel like a total idiot every time because it really does help. And the instructor is excellent. She's just very calming and non-judgemental, though I kept her real busy trying to help me get into poses in such a way where I wasn't in more pain those first few classes.

These days I know when she tells us what pose we'll be doing next what I'll need to help me achieve it so even though I'm still using all those bolsters and blocks (I've even added more to my fortress since that first class if you can imagine it), I can do it without her making a special effort to come help me.

Of course, brag is a good dog and so with that being said, she told us just last week about getting on our bellies to prepare for the serpent's pose. SERPENT'S POSE?! Are you kidding me?! I haven't been able to lie on my stomach since I was pregnant with Tess and you want me to not only lie on it but then arch up from the floor??

I wanted to tell her, "Hey, how about Snail's Pose" or "Fetal Position Pose"? I'm sure I could manage one of them.

But I just looked up at her and the panic in my eyes must have given me away because she looked right at me and said, "Stay as you are, I'll be over to help you."

I'm not even embarrassed anymore. I was just thankful to know I wasn't going to be trying to be a serpent.

So while everyone struck up off the floor from their bellies, I was on my back with not one, not two, but three bolsters and four blocks supporting my, maaaayybeeee 10 degree curve. Yup. Still not embarrassed.

Just call me the tin man.








Tuesday, October 2, 2018

Reality Bites...

A week ago yesterday Tess got sick. Very sick.

Like one minute she was good and then...bam!

And naturally this would happen on a day that I was orienting with a new home nurse for her. The poor girl walked through our door at 7am expecting to get Tess up and ready to take to school for the day and instead got a crash course on how to help Tess manage her cough, fever, heart rate and respirations. It wasn't pretty.

We spent the whole day moving Tessie to try to get her to cough because I knew her left lung was filling up. We did many breathing treatments, cough assist airway clearance treatments, and a whole lot of suctioning.

But Tess continued to get worse.  By the time Sheila came to help get Tess to bed for the night I had already called her pediatrician and pulmonologist for advice. Her pediatrician called in an antibiotic for her while warning me that it was most likely too late for it to work, and Sheila worked really hard to help Tess move that god awful junk in her lung. She and I did discuss taking Tess to the ER that evening but, and this makes me really angry, we knew that Tess just wasn't "sick enough" yet and we'd be sent right back home. What they don't understand is that by basically making Tess prove that she is sick enough to be admitted, she will have had just enough time for it to turn into pneumonia.

I was up a lot Monday night to try to help Tess breathe easier. I had hooked her up to oxygen and, by early Tuesday morning, was horrified to see her heart rate in the 150s, oxygen in the low 90s despite being on almost 4 liters of supplemental o2, and her respirations were between 70 and 80 breaths per minute. By 7am, when her nurse for the day got to the house, I had already given Tess her breathing treatments and knew we had to get her to the ER pronto. I quickly showered, packed up Tess's med bags, and called 911 while her nurse kept working on her. (If we had been on the island I honestly believe that they would have life flighted Tess off the island. She was in that much trouble).

Scarborough ambulance arrived within just a few minutes, packed Tess up, and loaded her into the ambulance and confirmed that I wanted to be taken to Maine Medical Center in Portland. I rode in the back with Tess.

The ER nurses, docs and respiratory therapists got busy and had drawn blood and done a chest xray before an hour was up. Her blood work showed an elevated white count and that it was bacterial while her xray showed a total white out of the left lung. She was immediately put on three strong antibiotics that covered everything from community acquired to aspiration pneumonia. During this time poor Tessie just felt miserable. She was also requiring deep suction using a nasal catheter and her oxygen dropped alarmingly at times. I was later told they suspected that her lung had at least partially collapsed.

By this point Charlie had gotten from the island to the hospital and helped soothe Tess while I excused myself to step out of her room for a minute for fear of bursting into tears in front of Tessie. I just couldn't handle seeing her struggle like that. It broke my heart.

After a consult with the pediatricians on call upstairs in the Barbara Bush Children's Hospital wing, it was determined that Tess should go to the PICU rather than the regular floor since she needed a lot more help and attention and basically a nurse ready to help at all times. They did tell me that they felt like, while yes, she was very sick, that she was being placed in PICU for the extra nursing help more than that they felt like was was in need of Intensive Care. Sort of like a mid-level of care. More than the regular floor could provide but not as intensive as the PICU made it sound.

During all of this, while still in the ER, they did an ultrasound of Tess's chest to be sure that she didn't have a pulmonary effusion on top of the pneumonia.  They were very concerned at the fact there was literally no air movement in her left lung. Thankfully, no effusion was found.

Tess did okay her first few days in PICU. Tons of breathing treatments, meds and just top notch care but she was still sicker than I've seen her. In fact, I made a point to tell all of her doctors that very thing. They all kept saying that her xray looked very similar to her xrays from her past two admissions for pneumonia and I kept telling them that, no, this time was very different because the past couple of times Tess was admitted, she was not requiring oxygen, wasn't feverish much, and was just better all the way around symptomatically. This time I needed a freakin' ambulance just to get her safely to the hospital from house which was only a ten minute drive away. I needed them to hear me.

This time was different.

One of the pulmonologists came in to talk about possibly doing a bronchoscopy and bronchial wash to help move all of the mucus plugs out of her lung but was concerned that, since she would need to be intubated for this procedure, and she was so sick, that he may not be able to take her off of the breathing equipment when it was over and thus would weaken her overall condition and we would have to make the decision on possible end of life care. He recommended helping Tess fight this on her own first and if and when the time came that she needed to be placed on a breathing tube due to her not being able to keep fighting on her own, that we would revisit the bronchial wash at that time since we would have nothing to lose at that point.

On day three Tess spiked a fever and just generally looked like crap for a kid who had been on steroids and three antibiotics for three days. It was also the highest her fever had been throughout this whole illness. Not good.

More xrays were ordered asap as well as another chest ultrasound (neither showed any new problems thankfully) which didn't really help us answer why the sudden fever but also let us know that she wasn't physically getting worse. We discussed the possibility of switching to even stronger antibiotics but in the end decided to stay the course to see what Tess would do.

By Friday night she was well enough to be moved to the regular peds floor and by late Saturday was able to be weaned off the oxygen.

She was discharged late yesterday but here's the thing, she is still very sick. As in, I have never seen her discharged from the hospital this sick. Like, I would normally be taking her IN to be seen like this, not home after being treated and discharged.

As scary as it is to think about, this may be her/our new reality. Tess was diagnosed with neuromuscular respiratory failure several years ago and, as her pulmonologist said to me before she was discharged yesterday, Tess is at the age where the disease starts to take hold which could explain why this particular pneumonia hit her so hard and she isn't recovering the same way she has in the past.  Last night was long and she needed some help managing her mucus and oxygen. She is acting scared at times because she can't catch her breath when coughing. Her oxygen and heart rate are still all over the place and she may need more oxygen at home now as part of her norm.

Frankly, it sucks. I'm hoping against hope that she just needs more time to heal up and will bounce back and be back to HER NORMAL baseline soon and that this is a temporary hurdle.

My gut has been saying otherwise. I don't think she's even close to being out of the woods with this pneumonia but god, I'm praying that I'm wrong. There are times she is looking so good and I'm like, Yes! She's kicking it! And then she's back down to low 02 stats and choking on her cough.

And if this does end up being the "new normal", all I can say about that is....

Reality bites.

But I'll leave you with this pic that her nurse took of her today when she looked so good because, dang, this kid is a freakin' Warrior!











Wednesday, August 22, 2018

Just another day in the life of Rett Syndrome....

I woke up this morning at my usual time of 6-ish, got up and opened the house up for Tess's home health nurse to arrive at 7. When Lindsay got here  we proceeded to go about our usual routine of getting Tess to the side of her bed, one person holding her while the other washed her and put on deoderant, briefs, bra, shirt, pants, etc. Then we transferred her together to her transport wheelchair that we keep upstairs so that Tess could begin her breathing treatment regimen.

I brushed her hair and put on her favorite movie as Lindsay got out the cart of equipment. And I do mean cart. It holds Tess's nebulizer, suction, cough assist, and chest vest.

Lindsay started with the usual xopenex via nebulizer to help open up Tess's airways as I wandered off to get myself somewhat presentable to take Tess to school by 8:30. After the xopenex came the hypertonic saline, again via nebulizer, and last, the dornase via nebulizer. The dornase is a medicine that is given to kids who have cystic fibrosis. Tess does not have CF but her lungs get "gummy" and can develop mucus plugs that lead to pneumonias similar to what happens to the lungs of a child who does have CF. All of this takes about 30 minutes or so.

Next is the cough assist. It's basically a machine that forces Tess to cough in order to move the crap that sits in her lungs by throwing pressured air down into her lungs then forcefully sucking it quickly back out. It's not pretty and it's not fun and Tess hates it. But man, that particular piece of equipment has quite literally been a lifesaver for Tessie. Then she gets 2 puffs from her flovent inhaler.

She gets this every day, twice a day when she is well. We do it 4 times per day when she is sick.

While all this is going on, Lindsay (or myself if I don't have a nurse on any given day) will mix up Tess's anti-seizure meds. 14 pills gets crushed and pushed into her gtube. FOURTEEN. And that's just the morning's dose. She'll get another 6.5 at 2pm and still another 16 at bed time. That's 36.5 anti-seizure pills per day.

Her seizures are not controlled despite all of that.

After her morning breathing treatment today, just as we were finishing up and getting ready to start the process of getting her on the chair lift and then into her real wheelchair that stays downstairs, Tess went into a seizure.

Lindsay called to me and we began timing. This was a big one. Her breathing was affected, her heart rate shot up to 160 beats per minute and she was drenched in sweat. We gave rescue meds at 4 minutes and again at 12. She still continued to seize. She finally stopped at about the 20 minute mark.

Needless to say, Tess spent the rest of the day in bed while I continued to hear heart alarms as she twitched from the after affects of all of those meds that had been pushed into her little body.

Tonight her temperature is slightly elevated and her heart rate is still a little too high for her so now  wait to see if it's all after affects of this morning's seizure or was the seizure actually a sign that something worse is brewing. Time will tell.

I'll also get to spend the rest of the night worrying about SUDEP.

Just take a second to imagine that. And then imagine it happening on a regular basis.

This is one small part of what goes on in the day of the life someone with Rett Syndrome.

This is just part of the reason I am fundraising for Rett Syndrome. No kid should have to go through this, especially considering how close we are to finding a cure.  Please consider donating to Tess's Team Page.  (hover over Tess's Team and it will link you to her page or you can copy and paste the link below into your search bar).  We are grateful for ANY amount you can give. And please consider sharing either this blog post or the link to Tess's Team Page on your own social media accounts! Thank you! :)

http://events.rettsyndrome.org/site/TR/Strollathon/General?team_id=1074&pg=team&fr_id=1114





Wednesday, March 14, 2018

The Green Envelope On The Fridge...

A couple of week's ago Tess had a check up with her pulmonologist at Maine Medical Center. Knock on wood, the kid has had an amazingly illness free winter in an almost too good to be true fashion. Her doc was very happy with how she was doing, we adjusted some daily breathing treatments, and then things turned pretty serious. 

He asked me if Tess had had the flu vaccine this winter and I replied absolutely, she had it at the beginning of November (which was a little late for her but with moving off the island, we missed the island clinic one).  The doc was happy to hear because, as we all know by now, this year's flu season has been more deadly than most and children like Tessie are hit the hardest. 

I told the doc that I had a huge fear of Tess getting this flu in particular due to everything I'd been hearing about the deadliness of it and then asked if he thought I was overreacting with my fear of it. 

The short answer? No. I was not. 

I then asked the question that haunts my nightmares. If Tess does get this flu, did he think she would survive it. 

The short answer. Again, no. 

ARGH! 

Now before anyone starts to think this guy is a big jerk with no bedside manner, I can assure you he is actually an amazing doctor with a huge heart for these kids and their families. He had even fit us in on a day when he doesn't normally see patients because he wanted to be able to spend an hour and a half with us. Like, he had literally blocked that off in his calendar. He's a good doc and more importantly, a good man. 

What he did say, and which I already knew in my heart, was that the chances of Tess surviving this flu were very slim. Especially since Tess's lungs and body have already been throughs so much so it's just not the same as a healthy child getting it. And, even seemingly healthy kids were dying from it. 

This led to him bringing up the topic of an Advanced Directive for Tess and if we had one. He knew we had met with Maine Medical's Palliative Care nurse a couple of times in the past and had even filled out paperwork called  My Wishes that does deal with end of life care and what that might look like for your child. 

When he asked if Tess was still a full code I very emphatically responded with, "YES!" I want every measure to be used to try to save her if she crashes. 

He looked at me very kindly and asked me gently did I fully understand what that meant? I was confused by the question because, hello! Of course I knew what it meant....CPR, many, many meds, possible life support (temporarily until she gets strong enough to breathe on her own again), etc.

He then asked me if I knew just exactly what CPR entailed. Well, I have watched an awful lot of Grey's Anatomy and have taken several CPR courses so, yeah! Of course I knew.

Except I didn't know. Not really.

CPR would be painful. Chances are they would break her ribs and sternum. They would push cardiac meds. And if they did manage to restart her heart, chances were very good that this would not be an isolated incident. That it was a sign of her body truly wearing down and would happen again. Maybe not that day or week, but also not too far off.  He also said that if they got Tess back, she would most likely need much more help medically speaking than she does now. If Tess ever needs life support due to an illness, that most likely she will never come off of it and would have to live the rest of her life hooked up to a ventilator in order to live. He then added, "And we don't know if we get her back if it's going to be the same girl you know now and in all honesty, I don't think it will be." 

I was just shaking my head no the whole time he was talking. No way in hell was I going to allow anyone to hurt Tessie even if it was because they were trying to save her. Not after everything she's been through and would have gone through to get to that point of needing CPR. I couldn't imagine intentionally inflicting more pain on her. Not on my watch. And the bottom line for me, for us, is Tess has EARNED the right, when her time does come,  to pass away with ease and as much dignity and comfort that we can give her. She deserves it. It would simply be selfish of us to allow anything else. When I told the doctor that I also said that I can't imagine ever signing a DNR on her. It's like saying "I give up" and I will never give up on Tessie. 

He told me there was a form that we could fill out that was a step by step of what we would allow for crisis care for Tess and that we could tailor it to say whatever we wanted.  He felt, given the crazy flu season and Tess's fragile health, that we shouldn't hesitate to get one filled out so that it would be in all of her doctor's computer systems and we would have a copy as well. After that, he set up an appointment for us with Palliative Care again and, after dropping Tessie off at school on Monday morning, we went to fill out that horrible, but necessary, piece of paper. 

Charlie and I have always said that the quality of Tess's life would always be the most important thing. Tessie has a good life. She loves her life. Her family. Oreo. Her school and friends. If she gets so sick that those decisions do need to be made, then Charlie and I have made them together with only that in mind. That Tess deserves whatever is best for her. Not us. If it was up to me, I would say DO EVERYTHING JUST SAVE HER! But that would be selfish. That would be for me, not for Tessie. And that's just not fair. 

In the end Charlie and I opted for a modified Full Code. Do everything you can to save her but no CPR or cardiac meds are to be given. We will  not have her hurt even more during a time when she will already be suffering and needs us to be strong for her. We will have her use breathing support if the doctors believe she has a chance of surviving as well as any and all other meds that could help her but that's where we are drawing the line. At that point it will be up to Tess and God. 

And I pray we have the courage and strength to remember this if and when this terrible time ever comes. 

In the meantime, the Advanced Directive sits in a green envelope that's hanging on our fridge because apparently paramedics are trained to look for them there. As you can imagine, having that staring at you everyday and knowing what's in it brings it's own heartache but I think the bigger heartache would be dishonoring Tess in any way. 

But it also sits next to happy things. Life affirming things like Blake and Bobby's Christmas Card and Ellie's Dean's List paperwork along with, on the other side, an art project of Tessie's. 

So the green envelope's heartache is lessened with daily reminders of the good stuff in life along with the hope and prayers that it will not need to be opened for a long, long, long time.