Tag Archives: Scottish Rite

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.

My mom bought them a cat tent for the stay should they become too unruly during the stay...Connor took a liking to it--more than the tent we actually bought him to play with. — My mom bought them a cat tent for the stay should they become too unruly…Connor took a liking to it–more than the tent we actually bought him to play with.

I'm like a cat. I wanna sit in laps. — Me, me! I’m like a cat! I wanna sit in laps!

Rapunzel....Rapunzel... — Rapunzel….Rapunzel…

I don't know what they were doing, but somehow they collapsed the tent down on themselves. — I don’t know what they were doing, but somehow they collapsed the tent down on themselves.

Parenting, Tuberous Sclerosis

Merry Christmas! It’s a tonic-clonic seizure!

January 1, 2014 Rebecca Gaunt 8 Comments

I can’t believe Christmas is over already. Seems like it was Halloween a week ago. Connor had a good Christmas, despite some not so fantastic developments beforehand.

I blogged previously about his bout with bronchitis and I mentioned that instead of an increase in seizures, which can happen in times of illness, he had a major decrease. Turns out many other parents have experienced this when illness causes their child to stop eating much. Hopefully, that’s a sign that the ketogenic diet will work for him. Did I say ketogenic and not modified Atkins diet? Yes, you read that correctly and I’ll come back to that.

Turns out, a week and a half almost seizure free wasn’t worth it because once he recovered and started eating again, they came back with a vengeance. They were longer, rougher and he was wobbly for a bit afterwards. His seizures for the last several months have topped out at 30 seconds. Now they were lasting two minutes. And they looked…odd. I sent a video to his neurologist who called me with the %&*# news that Connor’s seizures had morphed into tonic-clonic (grand mal) seizures. Now, I knew they were rougher than the partials we have always dealt with, but you can read descriptions all day long of seizure activity and it still may not look exactly as expected. So they were rougher, but still not as rough as the grand mals I envisioned. I was shocked and not shocked at the same time.

So damn. A new seizure type. Common in TSC, but we had been lucky to go so long without that turn of events considering Connor’s seizures started at birth. Until now, other than partials, his only other confirmed seizure type was infantile spasms. I have sometimes suspected absence seizures, but those are tough to peg.

Shortly before this development, his neuro had changed his mind about the recommended course of action. As I mentioned in another post, we were trying to get him into the Children’s Healthcare of Atlanta at Scottish Rite or Egleston ketogenic diet clinic for consultation regarding modified Atkins and seizure control. They couldn’t get us in until March, four months out from when we sent his records over. It took a month for them to even make the appointment, and our neuro was quite perturbed that after a month of trying to get started we had gotten nowhere and had three more months to wait. He did not say this, but my guess is that he was on board with MAD when he thought we’d be able to test out the efficacy quickly. Now, that we are facing several more weeks of seizures, I suppose he wants to take a more hardline approach. With the appearance of tonic-clinics, I’m very much on board now, whereas before — I was NOT thrilled with the idea of keto.

So we have continued our efforts to get in earlier at CHOA and they also referred us to Johns Hopkins and UAB in Birmingham, which also has a TSC clinic. Johns Hopkins also can’t get us in until March. So far UAB is the winner with a date of Feb. 4. So unless we get a miracle at CHOA, we will drive two hours to Alabama, which is preferable to flying to Baltimore.

In the meantime, we have upped his vigabatrin, something we were trying to avoid. His seizures shortened again and were less severe, though they still leave him wobbly. Most days he’s had one. Until two days ago when he had five. Yesterday he had one that left his right arm almost useless for 30 minutes after.

But on a happier note, Connor sure cleaned up at Christmas. We opened gifts at home in the morning with Chris’ parents who were in town, then headed to my parents for the afternoon and dinner, then stopped by Chris’ brother’s house where Connor went hog wild with his 10-year-old cousin Cody and their dog.

We can now start a family band, hopefully less annoying than Laughing Pizza, with Connor’s new keyboard, drum and xylophone. I continue to live vicariously through him by getting him a tent for his playroom (I can’t wait until he’s old enough for the Power Wheels I never got in the 80s). One of the gifts my parents gave him is the rideable airplane from Cars. He likes it until he accidentally triggers the mechanism that makes it light up and make noise. He takes off like a bat out of hell, so I suppose I will remove the batteries for the time being so he can play with it without fear of being eaten or chopped up or whatever it is he’s afraid of. He otherwise adores spinning the propeller.

The Christmas gift exchange between Chris and me was rather perilous…for me. Chris is not a “stuff” person. If it were up to him, we’d have a lot more bare square footage in this house. He always makes a list, and I always feel compelled to find at least one thing not on the list. However, I’ve completed his collections (that I started) of Chicago sports team Mr. Potato Heads and garden gnomes. I knew he wanted the Lego Rockefeller Center for his office, so score! An off-list item. Except when I got home, I made the mistake of asking for the updated Christmas list since I had only looked at his November birthday list. Guess what he had added? Dammit. So I gave it a shot by picking him up a button-up shirt at Belk. I stuck to his beloved Izod, but veered from his color palette. I knew there was a 95 percent chance of exchange. Mine’s on the left, his exchange is on the right.

The hubs prefers a more subtle earthy hue...unless the Bears are playing. — The hubs prefers a more subtle earthy hue…unless the Bears are playing.

For me he did a good job with three necklaces he picked out on his own, in addition to some Loft clothes I picked. He also got silly with this, which surprised me because my excessive mug collection drives him bonkers.

He also picked up a cow chip clip that moos loudly, as I am obsessed with black and white cows and hold to a belief that if I can get it out of the pantry with no one knowing, the calories don’t count. Massive backfire on his part. The thing is so sensitive, that even after being buried in drawer, open the fridge — MOOOOOOO!. Pour some milk — MOOOOOOOO! Turn on the sink — MOOOOOOOO! Then on New Year’s Eve it went completely batsh** and wouldn’t stop mooing even when we were sitting on the couch partying hard with VH1’s Happy Endings marathon surrounded by laundry (jealous?) I was upstairs when I finally heard Chris lose it and yell, SHUT UP! I heard a drawer being yanked open, so I rushed down to save my cow from possible obliteration.

I’m also thrilled to say we made it through all of 2013 without one hospitalization! Since Connor will be admitted in order to start the keto diet, we will not be able to say that of 2014. 2012 gave us five weeks in NICU, a brain surgery and an in-patient VEEG. Here’s hoping we all have a medically uneventful year.

One last thing — please keep in your thoughts that one of our newer TSC families entered our world of seizures last night and had to welcome 2014 in the ER. I’m hopeful they will quickly find seizure control. He’s doing well I understand.

I was contacted by Dave Terpening Insurance Company to be part of their “I Was Thankful for Insurance When…” post on their blog. I love any opportunity to get the word out on TSC so check it out here.

Clapping with Grandma (Chris's mom) — Clapping with Grandma (Chris’s mom) and remembering Lost back when it was good.

My brother came in from NYC and refused to change a single diaper.

Mommy is so awesome, i even lover her Mii. — Mommy is so awesome, I even love her Mii.

Mommy has lost her mind. I'm not getting in that. — Mommy has lost her mind. I’m not getting in that. Mommy is also questioning why her footwear looks so orthopedic here.

A cool cousin is one that gets down and crawls with you.

Boy who suffered up to 50 epileptic seizures a day enjoys Christmas without fits thanks to fat diet (mirror.co.uk)

Ordinary Life, Parenting

The Axis of Medical Evil, the Board of Education and Gordon Ramsay would totally love my shoe collection.

April 6, 2013 Rebecca Gaunt 1 Comment

The weirdest thing happened when I called Boston Children’s Hospital to schedule Connor’s MRI for August when we will be up there for the TSC study again. An actual person answered the phone, and he immediately scheduled the test.

It was surreal. I dialed. Someone answered. Things were accomplished.

Meanwhile, I’m still waiting for Children’s Healthcare of Atlanta at Scottish Rite to return a message I left with the medical records department 2.5 weeks ago. So my list of CHOA departments that don’t return phone calls is now:

1. Scottish Rite EEG (note: call was returned after I recruited neuro office to get involved)

2. Emory-CHOA billing (note: call was returned over a month later once I wrote a letter of complaint and sent a copy to every single board member including the CEO)

3. Scottish Rite Medical Records (note: pending)

The reason I was calling them is that I recently submitted my application for Katie Beckett Medicaid, which, if approved, will help pick up costs of Connor’s medical care not covered by insurance. I’ve submitted 8 metric tons of paperwork, only (I hope) minus his surgery discharge papers. Those must have been accidentally thrown away. I don’t know if the board is going to want proof from the hospital (even though the neurology notes make plenty of reference to it, but it’s government after all) so as a precaution, I sent in a medical records request. None of the check off boxes described what I needed so I tried to explain what I was looking for. They don’t provide the records until they figure out what printing it will cost and then they send you a bill. Apparently the department thinks I need the whole 200 something pages and they want to charge me over $100 for it. So I called to clarify that all I need is a couple pages pertaining to the surgery and I’m not paying $100 for it. The discharge papers were like six pages for God’s sakes. That was 2.5 weeks ago. I hate CHOA and their unprofessional business ethic.

A couple companies that deserve a positive shout out so that I can offer contrast: Level 4 prosthetics. Connor recently got a cranial remolding helmet (a more detailed blog to come on that). At his initial screening, it appeared to be covered and we paid the uncovered 20 percent portion. Fast forward a few weeks and I arrive home today from one of Connor’s helmet follow-up appointments to find a denial from United Healthcare. Say what now? You want us to pay for this $3,000 helmet? So I freak and contact all his doctors and physical therapist to get proof of necessity, and then I call Level 4, who I should have called first. They’re already on the appeal for me. Good stuff. Thank you! And United Healthcare, my child is adorable in his helmet, but I assure you it’s not just a fun accessory.

The other company is AquaTots of Kennesaw. I became nervous that I would soon be doing time for homicide due to parents who think they get to save the limited dressing rooms for their swimmers, so I expressed my dissatisfaction. They were very quick to respond and remedy the situation. And now the mom who thinks it’s okay to let her children leave their cars in front of entrances where other customers can fall and hurt themselves walks the earth safely again (until she once again almost simultaneously paralyzes me and makes me change my kid on the floor, then all bets are off).

So these are my days. Doing Connor stuff, trying to get into some freelance writing and watching Roseanne reruns. I feel like I should miss working more, but I don’t. Probably because by the time I left, my teaching to do list had changed so drastically.

Sample To Do List 2005

1. Lesson plans for next week

2. Copy 2nd grade newsletter

3. pull center materials

4. choose new read aloud novel

5. try not to turn beet red, break out in hives and pass out from anxiety when undergoing mandatory teaching observations

Sample To Do List 2012

1. Some random excel sheet with random meaningless data to be submitted to someone who will never even read it, assigned 5 minutes ago, due now

2. see #1

3. see #2

4. Collect elevendy bajillion weeks worth of data so a student can receive services, but probably not

5. Attend a committee meeting

6. see #5

7. see #6

8. see #7

9. ~~figure out what you’re teaching tomorrow.~~ Somebody wants another excel sheet with data due in 5 minutes

10. try not to turn beet red, break out in hives and pass out from anxiety because it’s a work day

And all for less pay every year. Hey, I get it. There’s no money to be had. Just be ready to see more of this stuff on school property if you don’t want to pay people in the education profession:

I won’t say where I took this recent photo. I might need them to hire me one day.

What I do miss is how hilarious some of those kids can be. I received texts from a former co-worker the other day. She teaches students now that I taught a couple years ago in first grade. They told her that my “shoes haunted them.” My heels were like two feet tall, and they always watched out for me because they were afraid I would topple over. If I’d known I would have based my compare/contrast lessons on heels vs. wedges.

I also decided to start pursuing my original plan to make some of Connor’s food myself. I have the little baby blender/steamer combo, but I’ve only used it for pretty basic stuff. I decided to finally make one of the recipes from the little booklet that came with it. Hey, why not? Connor eats EVERYTHING. I mean EVERYTHING. This was the result:

I used to be disgusted by moms drinking and eating after their kids, but the other day I found myself fighting the urge not to eat half his spaghetti and meat sauce. Then I let him drink out of my water bottle. But I also realized he has 50 percent of my DNA. That means it’s half my saliva. So that’s okay, right? Is that what these moms have known all along that I didn’t understand? Or should I just go out and buy some mom jeans now?

Despite the failure of my foray into baby chefery, I am still happy because winter is finally rolling out and warm days have come. I leave you with photos of my little Gordon Ramsay in a good mood enjoying the weather.

Only a ball pit until it's warm enough to become a swimming pool! — Only a ball pit until it’s warm enough to become a swimming pool!

Please click the Top Mommy Blogs link to the right! It really does make a difference!

Ordinary Life, Parenting, Travel, Tuberous Sclerosis

You want answers? I WANT THE TRUTH! Well, good luck with that.

December 27, 2012 Rebecca Gaunt Leave a comment

December has been a tough month for blogging. I feel like I’ve been going, going, going. That’s even more than I usually feel like I’m going, going, going with a 9-month-old. It started with stressing over trying to get that confounded EEG appointment, then going down to Florida to see Chris’s parents, coming home and checking into the hospital the next day for the EEG, getting discharged in time to start all the family festivities with those that came to town, then Christmas. I was so exhausted I had to renege on plans to hang with some friends at a bar downtown. This after weeks of thinking, “man, I want to go out.” Not that I don’t go out, but I wanted to go out more like I went out pre-baby.

It didn’t help that we went from warm, sunny Florida where it was still summer, and we floated around in the backyard pool with beers in our hand, back to chilly Atlanta, where we immediately had to check in for the stay from hell at Scottish Rite.

Pics from Florida:

So we got all nice and relaxed in time to check in for Connor’s EEG where we could promptly become stressed and agitated. We had no issues with our neurologist. He kept us informed and even let us out a day early as we’d caught several “episodes.” This is our second less than satisfactory in-patient experience. First time was after his brain surgery. The surgery part went great. We love our surgeon and we had a good experience with the surgery department. There were a few issues once we moved to his room though, the primary anger-inducing one being that the day after surgery when he started swelling, he was clearly in pain. His heart monitor kept going off because of it, but nobody ever came to check on him (or for any other alarm for that matter). Don’t get me wrong. I totally understand that every alarm is not an emergency, but as parents, when things go off repeatedly for an extended period of time, we might benefit from a little explanation of what warrants concern. Not to mention, it’s already stressful and then you’re sitting in a room with all this machinery beeping at you obnoxiously. It got to the point where in the middle of the night I just started silencing them myself (after it had been clearly established which ones were clearly unworthy of response). At any rate, we finally asked when his next round of pain meds would be. I stupidly assumed (as I am new to the medical world-my first hospital stay being Connor’s birth) that he was getting them because his skull had been drilled into and his brain resected. “Would you like him to receive pain meds?” was the response. “Ummm…yes. He’s in pain and crying.” The nurse responded, “Yes. I saw his heart rate kept going up on the monitor out there.”

Well, alrighty then. But this was before I read an article that advised to never have surgery on Fridays because weekends aren’t exactly the best staffed, so I chalked a lot of it up to that. Also, before I continue, I want to be clear that it’s not my intention to bash nurses. We’ve had great ones that were very proactive in pushing doctors that were taking their sweet time taking care of business, especially in the NICU, but it’s like any profession. Some are great, some are good, some suck. Because then there was the evening Aunt Donna watched him while we went to dinner and he pulled his IV out, spurting blood everywhere. The boy loves to yank his wires. She was left applying pressure to the bleeding spot until the nurse could return with a bandaid. Good thing it finally quit bleeding because nobody ever came back. We also couldn’t get his med schedule reestablished while we were there becaue every time shift changed, nobody had passed on that he takes them at 8 and 8, so they were coming at all crazy, inconsistent times.

So this time we were there mid-week. I do think he got more attention this time, which was funny because it was just a testing situation. But the meds were consistently late messing up his sleep schedule, sometimes more than an hour. And the most frustrating part is that I don’t want to yell at the wrong person. I don’t want to go off on the nurse, because if they are understaffed, that is not her fault. But with a lot of the stuff that doesn’t go smoothly, you just don’t know where the breakdown happened. I’m particularly uncomfortable in this area because I taught for seven years and I know what it is to have parents let you have it over things you have no control over.

But even midweek, we weren’t issue free. There was the EEG removal and shutdown I mentioned in my last entry. Then came the big one. The second night we were there I noticed Connor’s eye was red and irritated. I thought perhaps that in his rubbing and messing with his electrodes he may have gotten some glue in his eye, so I asked the nurse if there was something that could be done to soothe it. She was uncertain whether it was irritation or an infection so she wanted to check in with a doctor first. Thirteen hours later he finally got a saline flush. (And I had brought up the eye problem twice more). By then it had progressed to goopy, not opening, and him screaming like a bat out of hell when we pried it open. Sixteen hours later after more followups from me, a pediatrician checked him out. He’s still screaming and refusing to open his eyes. Seventeen hours later he got ointment and a swab to test for pinkeye. The swab would later come back negative, affirming that perhaps if he hadn’t had to wait 13 hours for an okay on a simple saline flush, that maybe he didn’t have to suffer the next few days, even after he came home, unable to see us or his toys. Here I thought being in a hospital was the optimal place to be if something like this happened. Who knew we’d have been better off at home and taking him for an emergency pediatrician appointment? Sixteen hours as a patient in a hospital. What happens if you contract MRSA? Does a limb have to fall off?

Headed home after his two-day EEG. Too bad he can't open his eyes to see his awesome hair. — Headed home after his two-day EEG. Too bad he can’t open his eyes to see his awesome hair.

I’ll end my diatribe there. But I will say that I’m the calm(er) one, always telling Chris not to burn bridges. God help any hospital that houses me should I ever lapse into a coma.

There was one thing that led me to feel grateful after this stressful stay. After we were home, a friend posted a link on Facebook about the passing of a friend’s premie baby. I didn’t know the parents, but as I was downstairs bitching about Connor’s eye, there were parents above us in a NICU I know all too well losing their child after 77 days of life. Things can always be worse. I can’t even imagine.

As I mentioned, Connor’s eye-rolling “episodes” as I now call them did not show up on EEG as seizure activity. After another day of comparing video of his eye-rolling with simultaneous EEG activity, one correlation our neuro could find was that when Connor is awake, electrical activity from his left occipital lobe tuber spreads over the left side of the brain. When he’s sleeping it spreads all over the brain. However, when he has the eye-rolling episodes, the activity resembles what it does when he’s sleeping even though he’s awake. But it doesn’t build up into a seizure. It’s just a little quick burst of activity from the tuber (which if I understand correctly isn’t uncommon in TSC) that dies away before it builds into anything. So, for the neuro, it still doesn’t explain why his eyes move like that when he has these clusters. He is still looking into it because he’s never seen this before. I’m glad now that he didn’t okay the ambulatory EEG because the test would have been a wash without video.

Anyway, December has been so crazy I never got to do my post about decorating for Christmas, which I love. So here are some shots of our house:

And my new pride and joy: a Lego Christmas village! Put together, of course, by Chris. I don’t have the patience. Chris’s initial plan was to assemble and disassemble on an annual basis since he enjoys Legos. Several hours of construction later, that plan was out the window. I’ll explore the fake snow option next year, but after hours of work, Chris was opposed to anything that required the manhandling and moving of the parts. Very, very opposed. So Merry Christmas. I didn’t break the village!

Shots of Connor’s first Christmas in the next blog entry!

With what these hospitals charge, there should be a swim up bar. (mixedupmommy.com)
And the results of Connor’s EEG are….Mom is clinically insane! (mixedupmommy.com)

Parenting, Tuberous Sclerosis, Uncategorized

Does insurance cover anger management?

November 30, 2012 Rebecca Gaunt 4 Comments

Mixed Up Mommy is just really in a pissed off mood today. All these years I’ve taken crap for being part of the teaching community, and everyone likes to crap on the teachers all the time. (“I pay your salary!” Oh yeah, well I pay taxes too, so I guess that makes me self-employed.) How about we turn that energy and focus it on the medical community…I’ll exclude nurses there since much of the time they seem to be the only ones doing anything, with the exception of Connor’s time recovering from seizure surgery on the seizure floor. They didn’t impress me much, but otherwise, they seem to be the only ones who get anything done. First of all, I’m sick to death of the administrative people. I hate them the most. They don’t give a damn. I’m sick of waiting for phone calls to be returned. This past summer, just to make an appointment with our surgeon, the scheduler took a week to call me back. Scheduling surgery? Another week. I received a bill that made no sense for $200 from the Emory-Children’s Clinic. I spent a month trying to get the billing department to call me back and explain it. I didn’t get a response until I mailed them a letter and sent a copy to every single member of the board, including the CEO. And it was a mistake. We didn’t owe anything. I’m sick of having to call doctors over and over and over. I’m sick of inordinate amounts of time in waiting rooms. I’m annoyed that we spent so long waiting for our eye appointment this morning that the doctor couldn’t even do the full exam because by then Connor was in one of those deep unarousable baby sleeps, and we had to go off the intial exam done by the tech for part of it.

I’m also pissed that I found out that the results of the ERG that was done on Connor’s eyes at Scottish Rite September 7 were never shared with anyone. His eyes have to be monitored because of a risky medication he’s on. This was just the baseline test to see where his vision started out before starting meds, so I wasn’t concerned, but I did notice they never contacted me with results. It was stupid of me not to follow up, but up until now, the one thing that does seem to go well in baby medical care is the sharing of the information. All Connor’s doctors and specialist do a good job of contacting one another about everything and always have on file what has gone on elsewhere. So I stupidly thought that a test that required sedation and admission through day surgery at Scottish Rite would warrant sharing with SOMEONE. But apparently we went through all that so the results could sit somewhere in lala land not be used for anything. Now I get to track them down and get them sent to the other doctors.

But, hmmm, how does one get another department to return your call when one can’t get a return call from the one she’s been trying to get in touch with since Wednesday? Thank you to the EEG department for closing for the weekend without returning any of my calls. Cuz God knows it ain’t no thing to squeeze in a 3-day EEG during the holidays. So I guess it’s the battle of the EEGs and ERGs.

But hey, it’s not your kid. What the hell do you care?

Parenting, Tuberous Sclerosis

Well, I don’t like talking on the phone either, but IT’S YOUR JOB.

November 29, 2012 Rebecca Gaunt 2 Comments

You might be wondering if we got Connor’s 3-day EEG scheduled. The answer would be no. Because, you see, anytime you schedule stuff hospital related, it doesn’t work like a doctor’s office where you get transferred to a person who schedules you on the spot. No. You leave voicemails for people who are supposed to call you back and don’t. They never do. And I’m getting really, really sick of it. The neurologist sent the order in yesterday morning, and the hospital is supposed to call me. By the end of business that day, I was quite antsy so I tracked down the department number on their website and got connected to the appropriate person. I got her voicemail (story of my life) which stated she was out of the office that day, but also explicitly stated that all messages left that day would be returned the next. Well, it’s 6 p.m. the “next” day and nothing. So I will be calling again first thing in the morning, at which time I expect to address a voicemail again, then spend the rest of the day seething. It’s no little thing trying to squeeze in three days in the hospital at the holidays! I’m stressing over two things. First, what if they don’t even have any openings for a ludicrous amount of time, like until next year? And then, what if the opening they do have screws up our plans this month? Not to mention it always takes forever to get the results, so the sooner the test is done, the sooner we can start the next phase of waiting. Waiting. Waiting. Waiting.

To top it off, I realized today that I have hung up on countless phone calls from the pharmacy that provides Connor’s Sabril. I’ve complained here before about my issues with them, so you might wonder why I would be hanging up on them repeatedly. Well, dear reader, this is why. When I call them I use an 800 number. When they call me it’s a 901 area code, Memphis number. But I only recently made this connection because every time I have answered the phone, nobody was there. It begins to ring on their end to connect me to someone, and then hold music begins to play. There is NO identifying information, even a recording, to inform you who is calling. Surprise! Like any normal person, I assumed this was some sort of telemarketing robo call. So I always hung up. Until I didn’t answer. Today I stayed on and was on hold for several minutes before someone came on identifying who it was. Great business model. Really.

I suppose I should bring something lighter in to close. I’ve figured out Connor’s favorite food finally. Of all things, it’s a combination of prunes and apples. PRUNES and apples. And you know what. It actually smells and tastes pretty good. Who knew? That might become his only solid if he keeps swinging his head back and forth to avoid the spoon like he does with some of the other pantry items.

Parenting, Tuberous Sclerosis

With what these hospitals charge, there should be a swim up bar.

November 28, 2012 Rebecca Gaunt 2 Comments

Arrrrgh! NONONONONONONO! So we requested an ambulatory (take home) 24-hour EEG from our neurologist so we could figure out what these eye rolling incidents are since they don’t seem to want to stop and they manage to dodge those office hours EEGs, but he feels given Connor’s age, that a 3-day video EEG would be better. So back to Scottish Rite we go. Ahhhhhh. Shoot me. Shoot me. Shoot me. An EEG at home by the light of the Christmas tree doesn’t seem so bad. Three days in a hospital? No. More. Hospital. I’m taking liquor and I dare the nurses to try and stop me. Please, please, don’t let them call and tell me they only have dates during the time we are supposed to be in Florida, or I’m going down there anyway and feeding myself to the 8-foot alligator that likes to sun itself outside my in-laws’ lanai.

In keeping with the theme of the day, my morning went like this. Pack up ~~800 pound~~ 22 pound baby and head out for 8:30 doctor’s appointment. Mom and baby are right on time, ten minutes early actually, as we triumphantly stride up to the desk, only to be told I’m not on the schedule. Oh that’s right. The dermatologist is at 2:10. I should be checking in for my physical at my general practitioner right now. Somehow, depsite the fact that I’m starving due to “no food after midnight” I still managed to confuse the appointments. Fortunately, my doctors are only 5 minutes apart on the same road. Well, fortunate if you’re not me, frazzled and with directional dyslexia. Nonetheless, I made it but a few minutes late so I could have needles jabbed in my arm. Baby guilt once again made me get the flu shot, the second of my lifetime. I got one last year so I wouldn’t break the fetus. I got one this year so I wouldn’t break the baby. Hey, Hubby, she says you have to get one, too! Haha! I should start snotting and feeling like crap shortly. The best part is that I get to go back this afternoon to face the ladies that saw me make an ass of myself this morning.

My husband and I recently got hooked on Scrabble by my parents. We played at the previously blogged about cabin with no cable where family bonding and quality time was forced upon us. Chris purchased Scrabble at Target and we also downloaded a Scrabble app on the iPad that let’s you play an opponent or the computer. On Sunday, Chris traveled to Pittsburgh for business where he spent some time honing his skills against the computer because it’s not enough that I can’t do math. He must also destroy me in Scrabble when words are all I have. Would you believe the computer played the word “tuber”? No, really. Freakin’ “tuber”. What are the odds of that? Perhaps the same as having TSC?

Deep breath. Okay. Positive thinking. The hospital will call shortly. They will have lots of availability. They will get us in quickly. It will not interfere with our trip like the last EEG, when we had to reschedule our vacation. I believe in Santa. I should probably get to eating now…I just tried to bite the cat.

Parenting, Tuberous Sclerosis, Uncategorized

The NICU

October 5, 2012 Rebecca Gaunt 1 Comment

It turns out that if you spend 9 months growing a baby with Oreos (along with the requisite veggies, fruits and grains of course!), even if you significantly reduce your Oreo intake for the following 6 months, you will not be able to then jump on an elliptical and resume your previous 45 minute routine. In fact, after 4 minutes, you will probably have a near death experience. Just a random observation for today.

Soooo picking up from yesterday, the seizures began around 5 or 6. We hadn’t seen him for several hours because of both the regular newborn checkup and the cardiac one. It was actually reaching a point of, “Where is my baby?” frustration. And let me say, care at Northside Hospital is excellent. Communication between floors and departments…not so much. When we started trying to locate him, nobody could find him. We were told to call this nursery, then that and he’d always already been moved. I was told to ask my nurse. She didn’t know either. This went on for a bit, and then I heard it. Chris was downstairs trying unsuccessfully to locate him as the alarm went off alerting the floor that a baby had been taken past the boundaries. Chris couldn’t get the elevator because they were on lockdown, and then he heard a security guard mumbling into a walkie talkie, saying something that certainly alluded to a baby being missing. This was the last straw that lead to Chris’s very loud and public demand to know where Connor was. And this is when they located him and informed us of the seizures. (The alarm was a staff member accidentally passing the boundary and would happen a couple more times while we were there. No missing babies!)

I wish I had written about this at the time because the emotions are hard to recapture 6 months later. But I could barely talk out loud about it for a couple months. But as scary as it was, we were still in the mindset of, okay, they’ll get these meds going and he’ll be home in a few more days. Well, a few more days stretched into 5 long weeks as the seizures were incredibly resistant to the medication, a hallmark of TSC. He started on phenabarbitol, then Keppra was added, and by the time he left he was on Dilantin as well. But he was still having an extraordinary number of seizures a day. At least 80 a day, maybe more. Many of them were subclinical which means only an EEG can detect it. They don’t cause the outward jerking. At this point it looked like we were gonna have to go on the surgery, so he was transferred across the street to Scottish Rite. I could have carried him over, yet it involved a $1500 ambulance transfer. Thank God for insurance.

feeding connor — I can’t believe there was a time when it was taxing to feed him 2 ounces (due to medication induced sleepiness) considering he’s now 6 months old and wearing 12-18 month clothing.

We met with his potential surgeon Dr. Chern at Scottish Rite. At this point we were finally miraculously seeing some improvement with the meds. He was still having a number of seizures, mostly subclinical, but it was decided that the benefits of waiting to do the surgery when he was bigger outweighed the cons. It would be safer in a few months. So after 5 weeks of driving to the hospital every day, he was finally released on April 23, 2012. And I have to say my husband got me through this. He was a rock. He had his moments, but I would have lost my mind without him. Just the simple fact of having a sick child is scary enough, but on top of that it shattered that “it can’t happen to me” belief that gets many of us through life. I’m a worrier by nature. Takeoff makes me nervous and the word cancer makes my stomach turn. And yet I still fly and could improve some health habits. Now for the first time, I truly realized that anything can happen to anyone at anytime. My plane could crash. I could actually get cancer. Fortunately we had so many other family and friends there to support us through all this. So thank you to all of you.

He never exactly had issues eating, but he would be so sleepy from meds and seizures that a feeding tube was used from time to time.

Connor’s official diagnosis wouldn’t come for several weeks. That’s the genetic test confirming his TSC, but from the rhabdomyoma in the heart, and the seizures, tuberous sclerosis was the immediate thought. He subsequently had an MRI for his brain, a kidney ultrasound, and an eye exam as those are areas most commonly affected. Thank God his kidneys and eyes were clear. But clearly the brain wouldn’t be. The tubers, including the one that would be surgically removed were evident. For my next entry I will get into the specifics of what TSC is.

Breastfeeding never worked out with all that was going on, so I pumped for the next 3 months until I couldn’t take being attached to the machine anymore. But it may have been for the best considering I had to carefully time my glasses of wine around pumping. Otherwise I probably would have knocked out a bottle on a nightly basis. When I tried going online for advice, I was shocked by how harsh and nasty a lot of the hardcore breastfeeding community is. It left me with a lot of guilt when I finally quit, but I had to for my mental state. It also left me disappointed that there was yet one more way in which women can be extremely unsupportive of other women. It’s easy to judge when everything goes hunky dory according to plan, isn’t it? I still have hostility about it. But women need to know that it’s extremely common to have problems with latching, pain, lactation failure, and many other things. So NYC’s Mayor Bloomberg can stick it where the sun don’t shine.

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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.