A night in the hospital.

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.

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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:

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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:

Getting fluids in the ER.
Getting fluids in the ER.
This bandaid is AMAZING!
This bandaid is AMAZING!
Typical man.
Typical man.
Perking up!
Perking 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:

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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!
Might as well taste the goods.
Might as well taste the goods.
Rapunzel....Rapunzel...
Rapunzel….Rapunzel…
Neighborhood Watch
Neighborhood Watch
Wanna play?
Wanna play?
Where are you going?!
Where are you going?!
Naptime.
Naptime.
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.
What goes around, comes around.
What goes around, comes around.








 

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9 thoughts on “A night in the hospital.”

  1. As a long time volunteer and huge fan of CHOA, I am distressed to hear about your family’s experience at S Rite. I am going to share this info, if you don’t mind- with some folks on the inside. This is personal for me- my daughter’s first seizures happened to be on a Monday, so I guess I was just lucky! As for those Cat boot/sock things… I am speechless.

    1. Thank you, Sarah! I was really disappointed to learn this. I totally understand that weekends have smaller staffs and that it is impractical to schedule routine EEGs, but it’s really upsetting not to have been able to find the root cause of what was going on with Connor, or at least rule something out. I hope they will reconsider this policy 🙂

  2. I am the unlucky mom whose 5 year old daughter had her first seizure on a Friday afternoon, and by the time the ambulance got us there (thanks to ATL traffic and the paramedic joking that she was probably jerking my chain about hallucinating) of course there was no way to get an EEG. Plus the ER doctor never even mentioned a seizure, although he did ask if she cold have gotten into anything and ran a tox screen on my child who was too sick to even pee by herself. We were almost discharged (she had the stomach virus, and received fluids) when she had another seizure and was admitted. Lucky again, we had a nurse standing in the room trying to fight her during this ‘neurological episode’ (unlucky for me, she was unfamiliar with complex seizures) to take her blood pressure. Her 3rd seizure happened the following day, when we had a brand new nurse – one week on the job out of school…she said she would bring a more seasoned nurse with her the next time I called.

    I did however record the first seizure for 1 min and 45 seconds (it lasted over 5 min, but I had no idea what was happening.) That was enough to diagnose her with Complex Partial Seizure disorder. I look back and realize this was not her first seizures….and since they have all happened while sleeping or waking up, I have no idea how many she really has. We were readmitted for vomiting, so did get an EEG the following Monday – 10 minutes after she took her nap because it wasn’t planned! When I requested a sleep deprived one, they said it didn’t matter and hoped she would fall asleep anyway. That didn’t happen since she was screaming and sobbing because her IV burned the entire time. Normal EEG means nothing is wrong, per the neurologist we saw (although they did agree to a 48 hour ambulatory one so they could see her sleeping.) AND since we happen to be everywhere at just the wrong time, I am left waiting, wondering if my child is an active sleeper, or seizing as I watch her arms and legs jerk over and over all night long. I wonder if we would still have to wait 2 months for an ambulatory EEG, and 4-6 months for an appointment with a neurologist who actually lists epilepsy and seizures, if they had been able to record her seizures on the weekend?

    I am less than thrilled with our experience…..to say the least.

      1. Thank you. She had another seizure last Saturday night. I am still patiently waiting for the Neurologist office to call back. I spoke to the nurse Monday and Tuesday, and she said she was awaiting the doctors response. We are also on a waiting list to get an appointment in 4-6 months. I have made an appointment in Augusta, and will be going in June if CHOA Neurology does not get us in…which seems likely since they don’t even return calls. As a parent, I thought seizures were scary, serious, and needed to be dealt with. I have learned a sore throat or rash warrants more alarm, which is slightly disturbing to me.

  3. I have heard about Dr. Flamini 🙂 I am in school so am stuck with insurance…I tried to pay out of pocket to see a provider out of network and was told it is illegal. I cannot believe how my hands are tied!

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