Tag Archives: Georgia

Current Events, Georgia, Medical Marijuana

Georgia Medical Cannabis Commission Votes Against Recommending In-State Cultivation

December 9, 2015 Rebecca Gaunt Leave a comment

I’m gonna keep this short and sweet. For some background you can read this if you need it. Today the Georgia Medical Cannabis Commission met to decide on the final recommendations for the state and the medical cannabis program. The vote was 11-5 against recommending in-state cultivation, which would keep medicine more affordable for patients and not force them to break federal law obtaining meds.

A recent poll found that 84 percent of Georgians support expansion of the law and in-state grow.

This is the breakdown of the vote. Please note which side most of the doctors are on versus lackeys for Governor Deal, who plans to block expansion.

Yes:
Rep. Allen Peake
Dr. Mandy Reece (pharmacist)
Dr. Cynthia Wetmore (oncologist and head of research for Emory and Children’s Healthcare)
Dr. Yong Park (pediatric neurologist)
Dr. Mark Murphy (gastroenterologist)
No:
Dr. Alice House (head of state medical board)
Brian Rickman (district attorney who was recent appointed judge by Gov Deal)
Dr. Brenda Fitzgerald (commissioner of dept of public health)
Senator Butch Miller (floor leader for Gov Deal)
Rep. Katie Dempsey (Rome)
Ryan Teague (exec counsel to Gov Deal)
Chief Stacey Cotton (police)
Sheriff Gary Gulledge
Rick Allen (Director of GA Drugs and Narcotics)
Vernon Keenan (head of GBI)
Gary Black via proxy vote (commissioner of agriculture).

I’d also like to thank Pastor Mike Griffin, head of the Georgia Baptist Convention who spoke at the hearing and said that although he has prayed with families who need this healing, it should not be passed. Basically his fear of recreational use (which is not on the table) is more important than the welfare of sick people. He can be reached at mgriffin@gabaptist.org.

Yep. Legislators and law enforcement are apparently more suited to making medical decisions than doctors and patients. Read it and weep, Georgia. No seriously, you should weep. This state has serious issues.

They used the federal government as an excuse. Georgia. Does Georgia have a track record of bowing to the federal government? Apparently, only when it suits them.

There will still be legislation introduced to try and expand the program to include more conditions and cultivation, but overcoming dirty Georgia politics to make it happen is not going to be easy.

Governor Nathan Deal
Phone: 404-656-1776
Email: georgia.governor@gov.state.ga.us

Find your state representatives here:

http://openstates.org/find_your_legislator/

Current Events, Georgia, Medical Marijuana, Parenting

Governor Deal plans to block medical cannabis expansion.

December 3, 2015 Rebecca Gaunt 5 Comments

I’m experiencing a serious feeling of deja vu. Except last year Governor Nathan Deal waited until after Christmas to drop the bomb on the sick and suffering of Georgia, along with their families. Happy holidays, citizens. You don’t matter.

Let’s do a brief recap. In early 2014, a parent lobby rose up, with the help of Rep. Allen Peake of Macon, to try and pass HB 885/Haleigh’s Hope Act to help people with epilepsy access cannabis oil. It was a very limited law, but by the time it hit the floor on the final day of session, it had been whittled down to nothing but immunity for possession of the oil. Political games were played, namely by Sen. Renee Unterman of Buford and Lt. Gov. Casey Cagle (who has his sights set on the Governor’s seat), and the bill died, much to the devastation of the families. As the clock ticked toward midnight, several families ran to Deal’s office to beg him to intervene, to demand that the bill get a vote. He wouldn’t come out of his office. More families moved to Colorado in desperation. And three children I knew through this effort would pass away as the fight continued.

Over the course of the year, Peake led a commission to explore the idea further and how to make it work in Georgia. They concluded in December of 2014. Everyone was excited at the prospect of a bill that would include more conditions and allow a higher ratio of THC to CBD (necessary for many people for whom CBD alone doesn’t cut it). It was also supposed to allow cultivation and growth in the state of Georgia as bringing it over state lines is federally illegal. Before the session even started, Deal made it clear growing was off the table. It was another devastating blow, however, HB 1 did pass with several eligible conditions. Residents could apply for a card that allowed them to possess cannabis oil with up to 5 percent THC.

Let me quickly say, I am for full medical marijuana. Legislators should not be able to dictate what conditions or stages of disease are eligible. They are NOT doctors, except in rare instances. But this is the sad hand we are dealt in Georgia. Too many elected officials that think it is their job to parent rather than represent the will of the people, who are largely in favor of medical cannabis. The goal for 2016 was to hopefully expand conditions and allow growing so that federal law doesn’t have to be broken to obtain it.

The signing of HB1 in 2015 was quite the production with the Governor’s office. He even shed (crocodile) tears as he signed the bill to help the families his staff strategically placed around him for the camera op. It was a performance worthy of an Academy Award.

Over the course of the past year, taxpayers have sponsored another committee to explore options for growing in Georgia. They have not completed their work or presented the final findings to Deal, however, yesterday he came out and said he will not support growing in 2016 either, even though the whole point of the committee he appointed was to make that happen.

He says law enforcement doesn’t want it. Well, last time I checked, that isn’t the branch of government that writes the laws.

He also says that the 300 people who have registered aren’t enough to be worth the cost of the program. Hear that, fellow card holders? Our loved ones aren’t worth it. He fails to recognize that many people can’t register because the restricted legislation doesn’t include their conditions, or if it does, they have to be end stage (yeah, you aren’t dying enough yet), and many need more THC than is allowed by the current law. Several patients are also encountering the issue of their doctor refusing to sign off simply because they oppose the idea or lack education about how it can benefit various conditions.

I find it funny that he considers the cost/benefit ratio not good enough to have in-state grow, but he supported pharmaceutical trials that cost the state an extraordinary amount of money, and have taken forever to benefit anyone at all.

He never intended to listen to either committee. But he was happy to waste your tax money putting on a show of fake compassion.

There are two things I really hate about epilepsy. The first is obviously what it has done and continues to do to my child, even though he has shown extraordinary improvement on CBD oil.

The second is how it has left me feeling about my state and my country. Getting involved in corrupt politics has been so incredibly disheartening. I was happier in the dark, but there is no going back. I just hope there is a light at the end of the tunnel in the form of a majority that can override Deal’s veto. But that road looks a lot like a Georgia road in an episode of The Walking Dead. We need everyone to speak up. Please call and email your state senators, representatives and, of course, the governor. Let him know you are tired of him ignoring the will of the people.

This site will help you find out who your state officials are:

http://openstates.org/find_your_legislator/

Governor Deal, this is just one the many faces you are hurting. Look at him. He is a person. He is a Georgia resident. He is loved. Now do your job.

For more on what happened last year, read this.

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Tuberous Sclerosis Complex Awareness Day “Thingie”

May 15, 2015 Rebecca Gaunt 1 Comment

Day 15 of Blogging for TSC Awareness Month

by guest blogger Julia Gray (Atlanta, Georgia)

I’m supposed to write about my identity.

Frankly, that’s easier said than done.

I’ve been told that INFP personalities,

Like me,

Have a hard time getting their thoughts and feelings

Out of their heads and into real life.

In the words of Holden Caulfield,

I can’t explain what I mean.

And even if I could,

I’m not sure I’d feel like it.

But I might as well try.

I am tumors

Surrounded by a body

A brain

And a vast imagination.

I am an annual MRI visit.

I have to lie completely still, quitting my twitching and itching for an hour while I lay inside a huge metal cylinder that takes pictures of the problem areas.

I am an uneven heartbeat

Belonging to a heart that wants to dance away from its problems

Or just write or draw them into oblivion.

I am the constant fear that when I zoned out just now I had a seizure and didn’t notice.

I am a lot of things.

An imagination.

Unending passion.

Personality.

I’m not just a cluster of tumors.

They say I’m a rarity,

An unfortunate privilege for people like them.

Unfortunate for me, that is.

They love it.

When my disease, my tumors and I walk into a room together, and the putrid medicinal smell pervades my nose,

We are involuntarily attached,

And they thrive on it.

I’m like a scientific oddity.

They are an undesired gift

For them and their white coats to gawk at and inspect.

I am known as my disease.

But I am not my disease.

Or my tumors.

I am a victim of it.

Georgia, Medical Marijuana

Georgia Rally for In-State Cultivation of Medical Cannabis

February 2, 2015 Rebecca Gaunt Leave a comment

As I previously posted, Gov. Deal stripped HB1 of the growing option, leaving it as immunity only. There will be a rally at the Capitol tomorrow to demonstrate the support for in-state growing. Please attend to show your support.

There are currently 17 medical conditions included in the bill. However, the Georgia Sheriffs’ Association and District Attorneys’ Association do not support the expansion to other diagnoses beyond epilepsy. Please contact your local sheriff and DA.

Hope to see you tomorrow!

Georgia, Medical Marijuana

Deal. Real. Before pharmaceutical companies I kneel.

January 11, 2015 Rebecca Gaunt 6 Comments

There is a very misleading headline floating around that the governor is supporting a bill for medical cannabis. It is not true. Yesterday Governor Nathan Deal dropped the bomb that he will veto a medical cannabis bill with in-state growing. He will, however, sign off on HB1 immediately if it is stripped to immunity only. What this means is that he wants sick people to travel to legal states, obtain cannabis oil that falls within the parameters described in HB1, and break federal law to bring it home. This is what he considers helping the people. Frankly, I’m impressed his hand isn’t too cramped up to sign any bills with all the patting he’s been doing on his own back for talking to GW Pharma about Epidiolex trials, the pharmaceutical version of CBD from the cannabis plant. (Isn’t it funny how pharmaceutical companies can find a medicinal use for a plant that is classified by the government as having none?)

Here’s the thing. Last year Rep. Allen Peake presented HB 885, also known as Haleigh’s Hope for Haleigh Cox. It started out with a plan for growing but got stripped in committee. I won’t rehash the whole ordeal again, but by the end it was also just an immunity bill with no way for people to obtain cannabis in Georgia. It had the votes, but Senator Renee Unterman killed it by attaching another bill that she knew good and well the House wouldn’t hear. Several families were down at the Capitol as the clock counted down to midnight on the last day. They went to Deal’s office to beg him to intervene, but he refused to come out and meet with them. He has said to reporters since then that he has met with the families. Most of the families would love to know who those families were and when because we’ve been trying to figure it out. He could have encouraged an immunity bill through last year but he chose to hide in his office.

He has known all along that there was a plan and a need for growing in the state. By agreeing to immunity only, he is encouraging families to break federal law by transporting it back to Georgia. You can be charged if caught driving through an illegal state or by TSA when flying. Not to mention the expense and challenge of people with serious medical conditions needing to leave the state to obtain it.

Throughout the 2014 election he was asked where he stood. He was vague and always pointed to what a great job he was doing talking to GW Pharma about bringing Epidiolex trials to Georgia. He was quiet as Rep. Peake led a committee during the months between sessions to create the legislation for HB1. He waited until this past Friday to finally be straight about the fact that he has no interest in genuinely helping the people in Georgia that could benefit. For him to not veto HB1, it must be stripped. He claims to want to appoint a committee to look into growing in 2016. Well, what have you been doing for the past year, Gov. Deal? And if he didn’t think Peake’s committee was doing a suitable job, why didn’t he step in? Because that wasn’t the issue. Deal is playing a different game. Meanwhile, people are sick and dying and many aren’t finding relief from traditional pharmaceuticals.

Sen. Curt Thompson has also announced his plans for SB7. It is a more comprehensive plan that is well-received by those who want to see a medical marijuana program in Georgia, but it isn’t expected to have a shot given that it allows so much more than Georgia legislators are comfortable with and is being introduced by a Democrat in a good ole boy Republican legislature.

But what can we expect from Deal, a man who secretively met last year with Sheldon Adelson? Adelson funded 85 percent of the campaign against Amendment 2 in Florida, which would have brought a comprehensive medical marijuana plan to the Sunshine state had it passed. In an amusing twist, Las Vegas casino king Adelson’s other pet project, besides keeping sick people from having more options, is blocking online gambling because “Internet betting could harm children and other vulnerable people.”

The AJC recently conducted a poll that showed 84 percent of Georgians support medical cannabis.

Want to share your thoughts on this subject with Deal? Give his office a call at 404-656-1776.

Connor gets to join an Epidiolex trial!

November 26, 2014 Rebecca Gaunt 2 Comments

We’ve been waiting months for confirmation that Connor can take part in a compassionate use trial for Epidiolex. His doctor was on board, but had to submit paperwork and jump hurdles due to the absurd schedule 1 classification by the DEA. Epidiolex is a marijuana-derived pharmaceutical. It contains CBD, and no THC. As we are still fighting for medical cannabis legislation here in Georgia, Chris and I desperately wanted this legal opportunity for Connor.

I actually cried when I got the confirmation. I had no idea how much of a weight this was on my shoulders until that moment because I hardly ever cry anymore. People who have known me for a long time might think, yeah right. I used to be Queen Crybaby, crying over the stupidest little things all the time. But now, on the rare occasions I do cry, it is still over something stupid — like the death of a favorite character on Walking Dead (and unlike some people who like to spoil things instantaneously on Facebook, I STILL won’t name names here for those who are playing catch up on Netflix–oops, veered off on a pet peeve tangent. Suffice to say, the instant someone croaks, you don’t need to flippin’ post it). But I never cry over important things that I probably should. Sometimes it kind of weirds me out and I wonder if something is wrong with me. At any rate, I knew tears were a sign of how important this is to me. As you can see, I may not be able to display emotion when it comes to Connor and TSC, but I’ll sob and punch you in the face over The Walking Dead.

Epidiolex trials are exceptionally difficult to get into, and I don’t know how we got so lucky. I know so many who have tried and haven’t been accepted. This also doesn’t change the need for legislation. Epidiolex is one formulation. It is not the same thing that kids like Charlotte Figi or Haleigh Cox are using out in Colorado. They are on whole plant strains of high-CBD, low-THC oils called Charlotte’s Web and Haleigh’s Hope. Some kids are benefitting from THCa. Others are supplementing with THC when the ratios in the oils don’t hit the spot for seizure control. And it will still be years before Epidiolex is available to the general public. What I’m saying is, Epidiolex isn’t one size fits all. But we hope it will fit Connor.

We aren’t sure on the start date yet. Before he can receive his first dose, he’s required to have a screening appointment. Being the holidays, the next available appointment isn’t until Jan. 6. I was rather dismayed by that as you must keep track of the seizures for a month after that appointment, and that meant he can’t start the med until February. But he happens to have a follow up appointment on the calendar already in early December. The study coordinator is looking into whether that slot will allow enough time for the screening. That would put him on the med by early January. Fingers crossed it’s sooner rather than later.

Medical Marijuana, Reblogs

CONNOR

November 20, 2014 Rebecca Gaunt Leave a comment

NICHOLE MONTANEZ

blogConnor.jpg-2

CONNOR

Connor was born in March of 2012. Ten weeks prior — at the 30-week ultrasound — we were told there was an irregularity of some sort on the heart wall. The explanation was vague. It might be nothing, or it might be <insert a bunch of big words we had never heard before>.
Tuberous sclerosis complex was mentioned as a possible cause, but it was such a vague maybe that we dismissed it when we Googled the stats. One in 6,000 live births. Well, it couldn’t be that. I was monitored carefully until Connor was born, but whatever was in his heart never grew or affected the heart function. Everything seemed normal until a few hours after delivery. That was when a nurse in the nursery realized he was having seizures. The next 37 days were spent in the NICU. The seemingly benign heart abnormality was confirmed as…

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Medical Marijuana

Thanks, Sen. Renee Unterman and Lt. Gov. Casey Cagle!

October 22, 2014 Rebecca Gaunt Leave a comment

My heart is going a mile a minute and I am trying not to go into a rage. The one thing that made it okay that HB 885 didn’t pass in its final form last session was that by then it had been stripped to an immunity bill. Not a lot of good when you can’t obtain it in your state. But Realm of Caring has decided not to move forward to with their plans to ship Charlotte’s Web UNLESS the state has already passed AT LEAST an immunity bill due to the closer scrutiny they have endured since rolling out this plan. GEORGIA FAMILIES THAT THOUGHT THEY WERE GOING TO BE ABLE TO GET IT SHIPPED AS EARLY AS NEXT MONTH NOW CAN’T. This is thanks to the despicable actions of SENATOR RENEE UNTERMAN of Buford (who is on the current medical cannabis committee and typically appears to be asleep in meetings–IF she bothers to stay for the whole thing) and LT. GOV. CASEY CAGLE who thought it would be cute to smirk at the grieving families as the session closed without it being allowed to go to a vote at his discretion. Please share the word of what they have done. Georgia families now have to wait for the next session to get a law that will allow them to receive it, when every state around us already can.

From RoC:

“This change will not impact availability for those of you who live in states with clearly defined statutes that allow individuals to possess CBD or low THC, regardless of the specific means by which these products are acquired. For everyone else: we will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. To be clear, as soon as we have confirmation from your state authorities that you will be exempt from prosecution, we will ship to you.”

So let them know how you feel:

Sen. Renee Unterman:

Renee.Unterman@senate.ga.gov

121-H State Capitol
Atlanta, GA 30334
Phone: (404) 463-1368
Fax: (404) 651-6767

Lt. Gov. Casey Cagle

e-mail here.

240 State Capitol
Atlanta, GA 30334
Phone: (404) 656-5030
Fax: (404) 656-6739

Medical Marijuana, Parenting, Tuberous Sclerosis

You can get Epidiolex in a month if your definition of a month is 210 days to years.

October 9, 2014 Rebecca Gaunt 2 Comments

Connor had a 48-hour VEEG a few weeks ago. It was awesome. Instead of waiting weeks and weeks to get into CHOA, we were given the option to use a company that comes to your house and hooks everything up. No hospital! God, it was beautiful. We had received the basic results, but recently had an appointment to discuss it more in depth with his neuro. I’ve been confused in documenting his seizures recently because they often have elements of his typical complex-partials, as well as his tonic-clonics. The EEG confirmed that his CPS (which are in one area of the brain), then generalize to the rest of the brain resulting in clonic seizures. He has a couple hot spots and it seems like every EEG seems to indicates a tradeoff in which is doing the dirty work. This time they all started in the right frontal lobe in the spot where he had surgery when he was four months old. Greeeeaaat.

This is not to say the surgery was not done well or wasn’t successful. It made a huge difference in reducing his seizure activity. That removed tuber was the reason Connor spent 37 days in NICU at birth. But sometimes the area left that surrounded the tuber can still trigger activity. This means a second surgery to remove more of that area is an option. But the doctor already knew we weren’t interested in exploring that route, not before we try medical cannabis. Connor is currently being considered for a compassionate use trial of Epidiolex, the GW pharmaceutical using extracted CBD.

We’ve been somewhat quiet about that because we already got disappointed once. Despite Rep. Sharon Cooper and Sue Rusche of National Families in Action swearing up and down during the last Georgia legislative session that we could all get into the clinical trials WITHIN A MONTH! JUST ASK YOUR DOCTOR! it was confirmed quickly what the families already knew. That’s. Bull. Shit.

Many families never had a shot at the trials being conducted by GW. They are focusing on Dravet and LGS. Plus, there is a lot of exclusionary criteria, such as having additional diagnoses. Many tried. Many were told no. One of those children, whose mom was assured she could get it, has since tragically passed away due to a seizure. He didn’t qualify.

Connor only has a shot because there happens to be a compassionate use trial here that isn’t limited to those two diagnoses. But it is very small, very expensive for the doctor and very complicated for a doctor to take part in due to the schedule 1 status of cannabis. So, sure, you can ask your doctor to look into this, but don’t hold your breath. However, the first time we thought we could be included, we found out Connor was excluded by GW because of his age. His doctor has since submitted paperwork to expand the age requirement and we are holding our breath for it to be approved. Sooooo, a month? Let’s see, the legislative session ended in March, so it has been at least seven since we were all told a month. And Connor is damn lucky he even has a shot at taking a part in such a small trial. Cross your fingers for him and us. Everyone else can just move to a legal state, break the law or wait the years it will take for Epidiolex to hit the market (and then hope that formulation is the one that will actually help).

Realm of Caring is also about to start shipping Charlotte’s Web, the the high CBD oil, made famous by CNN’s Weed with Sanjay Gupta. So the CBD options are slowly and fantastically coming our way, but should Connor be one of the cases that requires a different ratio of THC, we will either need to move to a legal state or hope Georgia can pass legislation in 2015 that will let us get what we need. The comfort level with CBD has skyrocketed nationwide, but THC is still demonized despite the fact that it is needed to treat many medical conditions. For now, we are hopeful that Connor will be one of the patients that responds well to CBD without the need for tweaking the ratio. It also remains to be seen how shipping the oil will play out due to the legal gray areas, especially for people in states with no legislation on the books. Certain politicians and people with authority think we should all settle for their word that they won’t prosecute us here. But tell that to Angela Brown in Minnesota who was recently arrested for giving her son CBD oil.

We’ll just be gnawing our fingernails, waiting to hear about the trial. Connor’s been having more seizures at night. His Emfit monitor was malfunctioning the other night (we were advised to adjust some settings which seems to be doing the trick), and now that I’m used to having a monitor that will alert us to convulsive seizures, I couldn’t sleep knowing it wasn’t on. I tried to sleep with Connor in the guest bed, but moving him woke him up and for the next hour and 15 minutes he appeared to be on speed. We played several rounds of “Got Your Nose” Scarface style –him grabbing mine, not the other way around. The bed and my head also made for equally sufficient trampolines. I finally gave up and had to put him back in the crib where he entertained himself for at least another hour. Life with epilepsy, ya’ll.

If you are interested in putting yourself on the wait list for Charlotte’s Web, go here.

Parenting, Tuberous Sclerosis

A night in the hospital.

September 22, 2014 Rebecca Gaunt 9 Comments

There has been a lot going on lately. Last Sunday I attended the celebration of life for Trinity Sumlin. I met her mother Sheryl when we were fighting for medical cannabis and HB 885 during the last Georgia legislative session. A couple months after HB 885 failed to pass — thanks to political gameplay, not lack of support — Sheryl took Trinity to Colorado to treat her. They were one of the families I shared about in this post. But sadly, Trinity passed away September 5. She was only 11. I was honored that Sheryl asked me to write the story to go in the children’s book she wanted to pass out at the celebration.

Connor’s seizure activity has been up and down. We really don’t see much activity in his waking hours, with the exception of little myoclonic jerks of his arms or sometimes his head. But all his complex-partial and tonic-clonic seizures are sleep related, so those happen during naps or at night. He’s also had a couple strange incidents in which he was not having obvious seizure activity, but he was weak and lethargic as though he had. Sometimes that has lasted several hours which concerned us. On Friday he was like that all day. Sometimes he’d start to perk up, only to decline again. He couldn’t sit on his own or even support his head. I slept with him on Friday to keep an eye on him. By midnight he was raring to go and things looked promising. Saturday morning he wasn’t quite as perky, but he did eat breakfast well (the day before he had no interest in drinking and eating) and was laughing so we thought it would turn out to be a normal day. Chris’ parents were in town and we all had plans to go to the North Georgia State Fair. This is how the day started:

As you can see, Connor looks less than enthralled. The one ride I took him on I had to hold his head to keep him from slumping over. We had never had two days of this before and all I could think was that there was some subclinical seizure activity going on (for those who don’t live in the world of epilepsy, that means seizures that appear on EEG but don’t cause visible activity). We called his neurologist’s office and his actual neuro also happened to be the one on call–which makes life soooooo much easier–right, TSC families?! When I told him he wasn’t really eating or drinking, he advised us to go to the ER. We were hesitant. believe it or not. That probably sounds crazy to those outside this life, but as most of us who have been dealing with this stuff for a while know, you start to realize how little can really be done at the ER. You’ll find many special needs families that have the attitude of “what can you do at the hospital that I can’t do at home?” (Besides infect me with MRSA). I mean if he was in a status seizure, or had something life threatening going on, that’s obviously ER territory, but this? We weren’t real confident. But it had been going on so long, we followed the advice. This is how the weekend ended up:

Doc says it's time to roll out! (to tune of Ludacris) — Doc says it’s time to roll out! (to tune of Ludacris)

They ran all the standard blood and urine tests (Connor chose not to pee for hours so when he did fill the bag there was no way to get it off without spreading the golden warmth everywhere). He was also hooked up to a keto-friendly (he’s on MAD) saline drip. Tests all came back normal. But when he didn’t really perk up after the saline, our neuro told the ER doctor not to send us home. This is where things got hairy. The ER doctor told us we were being admitted because of possible subclinical activity. So guess what we thought? How does one find out about subclinical activity? WITH AN EEG!!! I went home to pack a bag while Chris stayed with Connor. I was on my way back when I got the text. We were admitted , but they don’t do EEGs on the weekends. The rest of my texts to Chris were 90 percent F-bombs. The. Monopoly. Children’s. Healthcare. System. In. Georgia. Doesn’t. Do. Emergency. EEGs. On. Weekends. I was well aware that they didn’t schedule routine EEGS on the weekend, but…but…but… (And I later found out this happened to another TSC family who went in with INFANTILE SPASMS on a weekend). This is inexcusable. Utterly inexcusable. But I’ve never been quiet about how I feel about Children’s Healthcare of Atlanta at Scottish Rite (or CHOA in general). So we spent the night with Connor hooked to an IV to keep him hydrated. He did start to perk up late that evening and was much better the next day so we were discharged. I was happy to have him get the IV until he would eat and drink again and I totally understand why he was admitted. When we talked to Connor’s neuro, he said that was the reason he asked for us to be admitted, and that’s fine. The ER doc was either confused or we misunderstood the implication about the EEG, I guess.

But that doesn’t change my thoughts on the matter. There is no excuse that someone can’t get an EEG on the weekend for an emergency situation. I understand that hospitals aren’t as heavily staffed at that time, but this is not okay. So if a child has a seizure for the first time ever on a Friday night, you are crap out of luck until Monday? If a child presents with infantile spasms on a Saturday morning, too bad? We can’t confirm until Monday even though IS requires immediate treatment? I’m just at a loss.

I do want to say that other than that, the stay itself was probably the best one we’ve had. Attentive and proactive nurses and the attending doctor on the floor was fantastic, a far cry from the time he got EEG glue in his eye and I had to demand something be done for 17 hours before anyone would look at him. By then his eye was swollen shut and he was in terrific pain and requiring antibiotics. It also made me feel better about the fact that it took 16 hours to get paper towels brought to the room and that the urine sample that was spilled never got mopped or sanitized (there went our four paper towels that were left in the room). Requests were definitely made by our nurse and techs for those things to happen, but whoever was on the other end of the line has a sweet job because they never bothered to do it.

On an amusing note, the pharmacy didn’t have his meds on hand (a specialty one they never have, and the other they didn’t have in the right form) so we were asked to turn over our meds to be dispensed by the pharmacy. (Wonder what that will look like on the bill?) They have to keep his Onfi under lock and key because it’s a controlled substance. His Klonopin is too, but I didn’t turn that over since it’s just for clusters. It’s funny to think he’s prescribed two meds with more street value than the medical marijuana the law prohibits me from having.

Rosie the dog and Connor had an exciting couple of weeks. My parents went to Italy so we had their batsh** crazy full-grown kittens for two weeks. Rosie is in love with Thatcher the black cat. Followed her adoringly and stalkerish the whole time. She also enjoyed chasing Theo, who spent a good portion of the past two weeks hissing at everyone. One of them broke a wine glass. They were allowed to live only because my wine wasn’t in it.

I awoke one morning with four cats in my room looking at me. It was an eerie glimpse into the life of a cat lady, a possible calling I chose to ignore. I emailed my mom to tell her of the terrifying experience and she responded by offering to bring these back from Italy for me:

Random note: Connor and I made the local news. Check it out here.

I leave you with photos of our zoo. Our two cats are not present in the photos as they opted not to set foot outside our bedroom for the duration of this social experiment.