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