Monday, October 30, 2023

RNS Placement - Days 11/12

 Days 11/12 - needed this reminder today.

Now that Jenelle’s pain is managed she is very happy.

Thank you for the continued thoughts and prayers. We see the doctors on Wednesday.

💜 #lennoxgastautsyndrome #lgs #neuropace #rnssystem #rns #epilepsy

Friday, October 27, 2023

RNS Placement - Day 10

 It’s all my fault.


Day 10 - I spoke to Jenelle’s neurosurgeon and apparently she can have Tylenol every 4-6 hours. We’ve been giving it twice a day. Once in the morning and once at night. 😞 so after adjusting the Tylenol, Jenelle has a better day, but still cranky at times. Sometimes cranky even an hour after Tylenol, so we still don’t know. At least we know we can give more pain reliever.

Happy Friday!

#lennoxgastautsyndrome #lgs #epilepsy #rnssystem #neuropace

Thursday, October 26, 2023

RNS Placement - Day 9

Day 9 - another tough day. Jenelle had 2 doctor’s appointments. Endocrine and Cardiology. I thought her appointments were an hour apart but I was wrong, they were 2 hours apart. While waiting for our second appointment, Jenelle and I stopped by Floral Park to visit Aunt Nicki’s plaque. This is one of the few moments today when she wasn’t crying.

😞 #lennoxgastautsyndrome #lgs #rnssystem #neuropace #rns #epilepsy #specialneedskids

Wednesday, October 25, 2023

RNS Placement - Day 7/8

Days 7/8 - I wish our happy girl would come back again. Last 2 days have been stressful. Jenelle is now experiencing bouts of crankiness and inconsolable crying. It’s not fun, especially when she can’t tell us what’s going on. Brett and I are exhausted. Our home nurse was here today… first day since before surgery because she was ill. She thinks Jenelle is just frustrated. Can’t imagine why?

😏. In other news, neurosurgery called today and asked us to upload data nightly. They think they have enough data to justify turning on the neurotransmitter at our post-op visit on 11/1. That would be amazing!

Please keep us in your good thoughts and prayers. 💜 #lennoxgastautsyndrome #lgs #rnssystem #neuropace #rns #epilepsy #specialneedskids

Monday, October 23, 2023

RNS Placement - Day 7 "Downloading Jenelle"

Day 7 - Jenelle had a better day today. We think some of the pain she complains about might actually be gas… due to the antibiotics and new formula. So I thought now would be a good time to explain our “homework” with the RNS. At her surgery, we were given a laptop with a wand to “download” the data from the device in her head. Each night I download the data, then we upload it to her doctor’s office every Sunday. Right now, the RNS is not turned on to deliver electrical stimulation, but rather to gather data similar to an EEG. After they have enough data, the doctor will turn on the RNS to best target her seizure areas. Pretty cool huh?

🤓 enjoy the video.

💜 #lennoxgastautsyndrome #lgs #rnssystem #neuropace #epilepsy #specialneedskids

Sunday, October 22, 2023

HAPPY BIRTHDAY and RNS Placement Day 6

Day 6 - Happy 21st Birthday Jenelle!

Recovery at home has been okay. Jenelle seems to be experiencing more pain, and swelling and is getting Tylenol more frequently. Her incisions look great and she sleeps well all night. We are taking it easy and trying to keep her comfortable. We uploaded the data from her device last night and we are learning how to collect it as well with the lap top. The handbook recommends that her RNS is not compatible with the use of stun guns or near jackhammers among other things.

Here is our cute new 21 year old - cute shirt from Aunt Norma and Uncle Dave!

Thank you for continued thoughts and prayers. Praying it gets easier for her every day! 🥰💜 #lennoxgastautsyndrome #lgs #rnssystem #neuropace

Saturday, October 21, 2023

RNS Placement - Day 4/5

Day 4/5 - we left the hospital last night and got home around 7:30. Jenelle slept well and got a cute haircut ala Mommy this morning. Now we rest and recover and keep our incisions clean! Thanks again for continuing thoughts and prayers! Happy Saturday!

💜🥰 #lennoxgastautsyndrome #rnssystem #neuropace #epilepsy #specialneedskids

Friday, October 20, 2023

RNS Placement - Day 4

Day 4 - a couple of set backs today, but we are still on schedule to go home tonight. Jenelle has been doing very well pain wise, is tolerating food and acting more like herself. The only thing keeping us here is to finish IV antibiotics (Vancomycin). On Day 2 when we moved from the PICU to 5th floor, her IV blew causing a delay in meds. Well we were hoping to be home this morning, but Jenelle’s second IV did not want to cooperate today (and blew) so we got a new one. The new IV location is a bit tricky, right near her elbow, so when she bends her arm, the IV colludes. We are just now on the last hour of the last dose with discharge papers in hand.

Jenelle also has some swelling today which is not unusual for day 3 post surgery. We got to change her head bandages and see her incisions, but I’ll spare you from the photos! Thanks for the continued thoughts and prayers!

💜#lennoxgastautsyndrome #rnssystem #neuropace #specialneeds

Thursday, October 19, 2023

RNS Placement - Day 3

 Day 3 - all good! Jenelle is in great spirits as you can see from the smiles. Slept all night and is only taking Tylenol as needed for pain. We get to go home tomorrow after her last dose of antibiotics! Yay! Thank you for the continued prayers and positive thoughts!

💜 #lennoxgastautsyndrome #neuropace #rnssystem #epilepsy #specialneeds

Wednesday, October 18, 2023

RNS Placement - Day 2

 Day 2 at Spa CHOC! Jenelle has been very calm and comfortable today. Didn’t sleep much last night so we are hoping for a better night. We graduated from the PICU to the 5th floor and we’ve settled in just fine. Thank you for the continued prayers!

💜 #lennoxgastautsyndrome #neuropace #rnssystem #epilepsy #specialneeds

Tuesday, October 17, 2023

Surgery Day!

Surgery today to place the RNS went very well and the neurologist “was giddy and geeked out excitedly” about the perfect placement of the probes! We are in the PICU tonight and Jenelle is mellow but awake! Lots of new things to learn! Thank you for the continued thoughts and prayers!

❤️ #lennoxgastautsyndrome #epilepsy #neuropace #rnssystem #specialneedskids

Monday, October 16, 2023

Tuesday is the Big Day!

Tomorrow, October 17, is the surgery for the final placement of Jenelle's RNS Device.  In pre-op meetings with the doctor, they reitterated that they were confident with the data they got from the SEEG that they will permanently place the probes in the best place for feedback and treatment of Jenelle's seizures (that is the central medium area of the thalamus.)

Because I've been talking and posting so much about the RNS, I've had quite a few ads on my personal social media pages about the system.  This website from Neuropace is well written and explains things easily.  

After the surgery tomorrow, Jenelle will remain in the hospital for a few days for pain management and to make sure her incision is healing.  We hope to be home by Friday.   The next step is that Dr. Steenari will "monitor" the information she gets from device.  I'll know more when we meet with the representative for Neuropace, but its likely we will be given a lap top, or similar device to download weekly readings and send to Dr. Steenari.  After some time, we will meet again for Dr. Steenari to program and turn on the RNS.  The usual time will take 3 months of data, but Dr. Steenari believes with the frequency of Jenelle's daily seizures, it may only take a few weeks to get enough data.  The benefits of the RNS include providing immediate data to Jenelle's doctor about where and how her seizures are presenting, how frequently, and how she responds.  With that information, the doctor will determine how to program the settings for the electric stimulation used to stop her seizures.

We hope this new technology will help Jenelle have fewer seizures a day, without the side effects of medication.  Also, the RNS helps to lower to rate of SUDEP (Sudden Unexpected Death of Someone With Epilepsy.)   The mortality rate of patients with Lennox Gastaut Syndrome is 5%, with LGS patients 24% more likely to die of SUDEP.  Right now, Jenelle is averaging 5 or more seizures a day, with 1 of those daily seizures being tonic clonic (grand mal) usually lasting 2 minutes or more.

We are very hopeful, and very anxious that the surgery goes well tomorrow.  Please keep us in your thoughts and prayer and I will keep you posted!