Thursday, December 07, 2023

The one where I give you all the details...

Note - I started drafting this entry on November 16, 2023.  The next day, we tragically lost the family cat, Bruin, and I was unable to get back to this post before Thanksgiving and no the Christmas rush.  Below cuts off quickly and I plan to post it with the November 17th date (but finalized it in early December.)  I promise to update more about Jenelle's recovery in the coming days.  Thanks!

This year continue to be "a lot" to get through.  As a parent of a child with Epilepsy, we are obviously superstitcious.  Who ever said "It's November, what else can go wrong this year?" needs to be taken out back and spanked with a wooden spoon!

First of all - thank you all for the continued love, support, cards, meals and continued prayers for our sweet Jenelle during her recent surgeries.  Three brain surgeries in 6 weeks is a lot, and that it not all of the issues we've been dealing with for Jenelle.  So here is the rest of it, so you can understand why we've aged 10 years in the last 2 months.

Second Issue - Weight loss.  Jenelle is fed via feeding tube - nothing by mouth since losing her front teeth in January 2020.  We started to notice she was losing weight in June, when we met with her GI Doctor, Dr. Shaneen Idries on June 25, 2023.  At that time, we switched her formula to one with more calories.  It took insurance about 6 weeks to get us the correct forumla, which wasn't a problem at the time because I had plently of cases of the current formula for Jenelle.  I was told with the switch, we should give the new formula 3 times a day (or 3 cans a day.)  We started the new formula the beginning of August.

When Jenelle was weighed for her SEEG on September 5, she had dropped from 100 pounds to 96 pounds.  She was not gaining weight.  Because we were dealing with the upcoming surgeries, I decided to increase her to 5 cans of the new formula a day.  By the time we got to the RNS surgery on October 17, Jenelle weighed 86 pounds.  Something was wrong.  During that stay, I asked for the GI department to check in with us because of the significant weight loss.  We decided with all of the surgeries, we would "stay the course" with 5 cans a day of the new forumla and scheduled a follow up visit with GI that we had yesterday.  

And while we were addressing the weight loss issues, I was simultaneously dealing with our "Third Issue" - Insurance Change.

Jenelle has been on what is called an "Institutional Deeming Waver" since around age 6 and her medical insurance is provided by state Medi-cal Insruance. We have known for many months now that when Jenelle turned 21, her medical group, CHOC Health Alliance, would no longer keep her as a patient.  Recall that Jenelle had her third brain surgery on October 17, and turned 21 on October 22.  As of November 1, Jenelle medical group switched from CHOC Health Alliance to Cal Optima Community Network.  The only doctor that was not in the Community Network option was her pediatrician, so Jenelle now has a new "adult" Primary Care Physician, who we had to meet with ASAP to get all of her prescriptions and authorizations for things like Diapers, home nursing, etc. re-approved.  Fortunately, my experience jumping through HMO hoops finally paid off.  So think of this change similar to changing your medical group if you have an HMO.  Lots of hoops to jump through, lots of "I's" to dot and "T's" to cross to get everything back to status quo.  

The insurance change is partly why we expedited the RNS surgery.  Had we changed medical groups before the surgery, we would have had to go through the authorization and approvals all over again.  Always remember to ask for a case manager when you encounter changes like this with your insurance.  One was assigned to Jenelle and we literally talked on thr morning of November 1 - the same day as our post-op visit - and magically she got those two visits approved!  There are Angels in this world looking over us.

Jenelle's recovery has been challenging, but I'll leave that for another post.  Thank you again for all the positive thoughts and prayers.  I will keep you posted!   

Thursday, November 02, 2023

RNS Placement - Day 15

 Day 15 - Someone looks very excited to go back to school!

☺️#epilepsy #lgs #lennoxgastautsyndrome #rnssystem #rns #neuropace #epilepsyawarenessmonth

Wednesday, November 01, 2023

RNS Placement - Day 14

Day 14 - we had our post op visit today with the Neurosurgeon and Neurologist and the representative from @neuropace.rns we discussed a lot of things, and came away with this … Jenelle’s incisions are healing well and after reviewing all daily data, they decided to turn on the RNS! The RNS is now programmed to send electric stimulation when it detects certain brain wave patterns. Pretty cool!

🧠💜⚡️Oh yes, and November is Epilepsy Awareness Month. Needless to say, we are VERY Aware! 🥰

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!

Saturday, September 16, 2023

Stereographic EEG - Done!

 Jenelle is amazing and did fantastic last week while in hospital for her Stereographic EEG (SEEG).  

We arrived for surgery on Tuesday, September 5 at 5:00 AM.  Jenelle went into surgery around 7:30 A.M. for an anticipated 5 hour surgery.  Dr. Olaya, her surgeon, explained that they would sedate Jenelle, place her into a "HALO" and then perform a CT Scan to make sure they had the exact location for where they were going to have a robot place 4 needle like probes into the Thalamus and Central Medium of her brain to track where her seizures were coming from.  An SEEG is also sometimes referred to as “brain mapping.” 

Miraculously, surgery only lasted about 4 hours, and we met Jenelle in the Post Anesthesia Care Unit where she was already awake when we got there.  While her pain was managed, she was very frustrated.  Because she had "probes" sticking into her brain, they placed mittens/boxing gloves on Jenelle's hands to keep her from getting too close to the probes to pull them out.  One of Jenelle's behavioral habits is to keep her hands at the nape of her neck, and ofter to pull on her hair.  Needless to say, she was not happy.

Jenelle was hooked up to the recording device for 3 days.  In all, we recorded at least one of all 3 of her different types of seizures. Tonic, Head Drop and Tonic/Clonic (aka Grand Mal), with a 3 minute Tonic Clonic seconds before the Epilepsy Monitoring Unit was about to disconnect the recorder!  Her Neurologist is very pleased and said that from the seizures they caught, they see that her seizures begin in the Central Medium and often start on the left side  her brain.  Originally the Neuro thought Thalamus, so this is huge as if we had not done the SEEG, we likely would have interested the permanent probes in the wrong part of her brain.

Jenelle had 2 surgeries – one to place the probes and one to remove them.  She had a bit of pain, and a lot of frustration because of the mittens/boxing gloves on her hands.  Because of the probes inserted into the brain, we had a "Sitter" sitting beside her bed the entire time to make sure she didn't try to remove them.  She seemed to have more pain with the second surgery and needed Morphine that night to sleep.  Since being home, she needed Tylenol the first day and has been fine without.  We eventually got home late Saturday afternoon.

The first few days after the probes were removed, she was pretty weak, likely from being in bed for 5 days.  when she walks which is likely from being in bed for a week.   Once home She recovered pretty quickly and was playing with her favorite toys.  Jenelle went back to school on Wednesday, and we are told was very happy to see her friends. 

The next surgery will be in about 3-4 weeks to place the permanent RNS (Responsive Neuro Stimulator.)  That recovery time should be about the same, assuming she does just as well in recovery and just in time for her 21st birthday!  When we know more about that date, I will let you know.  For now, we are just enjoying being home, eating food that isn't fast or from the hospital and getting our girl back on her routine.

Thank you all for the continued prayers and positive thoughts.  As always, I'll keep you posted!

5:00 AM -What is going on?

After 1st surgery with a Luigi Mario Cart cap protecting the probes.

Moving from PICU to 5th Floor.

Sweet moments with Daddy!

Waking up after 2nd surgery - Messy Hair, don't care!

And after 4 days at home, back to school!

Thursday, August 17, 2023

Ready... Set... GO!

Lots of things are in motion and I feel if I don't update now, I'll never catch up. Jenelle has not been doing well at all this summer since starting Xcopri.  Lots of increased seizures, including new seizure types (tonic/clonic aka grand mal) and disturbing new behaviors.  Originally, we were scheduled to have the "Pre-Op" meeting on August 22, and scheduled the Stereo EEG for September 5.  Instead, we met on Tuesday (8/15) with Jenelle's Neurologist, Dr. Steenari and Neurosurgeon, Dr. Olaya. Given Jenelle's increased seizures, they moved up the Pre Op appointment in order to discuss everything.  At the meeting, the team presented us with an option of keeping the Stereo EEG appointment, or just do surgery on that date to insert the RNS device.  

Here is the reasoning for this option.  The seizures that present with Lennox Gastaut Syndrom (LGS) are believed to begin deep within the brain - often in the area of the Thalamus.  So, we could choose to add extra time by doing the Stereo EEG first, giving the doctors a better idea of where to place the leads for the RNS, or just inserting the RNS blindly, but in the vicinity of the Thalamus.  I was ready to get it over with and just insert the RNS, but Brett had some rather good questions, and changed my mind.  

If they simply insert the RNS blindly, and there is a chance that it doesn't help, and they have to do another surgery to re-insert more probes.  Our main reason for not wanting to proceed with the Corpus Callosotomy surgery that is recommended is because it would be "cutting" brain tissue, without exactly knowing if it is the right thing to do.  Brett felt simply inserting the RNS without the Stero EEG would be doing the exact same thing.  He's right! (He'll love me for saying that!)

So, Jenelle is scheduled to be admitted to CHOC hospital on September 5 for the Stereo EEG procedure.  She will be in hospital for a minimum of 3 days, and possibly as long as 10 days or more.  We will be there as long as it is necessary to get the information the doctors need in order to know where to place the RNS probes.  With Jenelle being so unstable of late, we are betting on a short stay, and keeping fingers crossed.

After the Stereo EEG, Jenelle will go home, and can return to school.  They will allow her to "heal" for a couple of weeks, while they review the data.  Then, depending on timing, Jenelle will be re-admitted to CHOC for the placement of the RNS. That surgery will likely be in late September, first week of October.

We are really excited that we are going with the RNS device because we learned that there is a new study going on of LGS patients and the RNS device.  Now that we are doing the Stereo EEG first, it is possible that Dr. Steenari will have time to submit Jenelle's case to see if she can be included in that study so her outcome can help other patients newly diagnosed with LGS.

Scary and exciting times.  Please keep us in your thoughts and prayers and I will of course update here.

Yesterday, Jenelle started the first day of Year 15 at Tustin High School.  She seemed to be very excited to return and see teachers and friends. I worked from home to stay close to school in case anything happened, and got a call from Radiology to scheduled an MRI for Jenelle.  Given that we just saw the team the day before, we were puzzled.  Turns out, they had a cancellation and Dr. Olaya needs another MRI before the 5th in order to help him place the Stereo EEG probes.  I had to pick her up from school and take her to his office so they could turn off the VNS in order to get the MRI.  Jenelle missed out on her bus ride home that she always enjoys.  This morning, we left at 6AM for another sedated MRI.  Jenelle did very well and we are home.  

Here are some photos of the first day of school and of us checking in for the MRI at 6AM today.  

Thank you for continued prayers - I promise to keep you posted!

First Day - Year 15

Jenelle's bus driver and aide

Too early for MRI check in!