Well we're settling in for a few days possibly week here at CHOC. Hopefully I can explain this all in the most educated way. However, please please remember I am not a doctor. Just a mom trying to get a grasp on everything going on and relay the information to all of you!
We had a scheduled EEG yesterday afternoon. I had called on Tuesday to check on how long it would be and was told we'd be at the hospital for 2 hours including check in/prep/EEG. Honestly, Dave and I were concerned this wasn't enough time to really see what's been going on with Miss Riley.
We made it through the 45 mins or so of the EEG and Riley was very good. Calm, relaxed and did not have any of her startle seizures, as we've been calling them. So.... I asked the tech if I could try and provoke her. There are certain times when Riley does these seizures and I was pretty certain I could get her going. I did not want to leave without having the EEG tech get the seizure on tape. It would have been a wasted trip really and we know Riley needs some assistance to control these seizures.
Well, sure enough we turned the lights on, I played a video from my phone and Riley started. The tech started recording again and then promptly left the room.... Ummm okay. I texted Dave right away and said we're staying. I just knew. Again.
She came back 10-15 mins later maybe it was longer, maybe it was shorter. Really it's a blur. She had more electrodes with her and let us know that neurology had reviewed the test and wanted us to head to the ER. They'd admit us and we'd have continuous monitoring. At this point we thought we'd be here 24 hours or so and then get to go home. Well we were wrong.
Things didn't really become clear until this morning. What Riley is presenting with is two different types of seizures. One is managed pretty well with phenobarbital. The other isn't being managed. Her startle seizure started a few months ago, here and there. If you recall last month we were in the ER because her seizure activity had increased to multiple episodes a day lasting longer then we'd like. We had an overnight stay a med adjustment and went home. Worked okay for a few days and then the seizures started increasing again. I really wish we'd had the continuous monitoring last month while we were here but, not much we can do now. When I tried to joke about the what ifs and what could shoulda woulda in regards to everything (we're tlaking back to the day after Christmas) today the very dry, zero personality neurologist said I was going to give myself a stress ulcer. I was trying to make a joke btw not being serious. He had also never heard the term "Dr. Google" which humored me beyond belief. Sometimes it's the silly ridiculous things that get us through the days.
At this point they are diagnosing Riley with Infantile Spasms. While I feel that these have been caught relatively early I am still pretty sick about it. Most likely her phenobarbital helped to keep these spasms at bay for awhile. Now they are pretty regular and need to be treated. And now here comes the complicated part.
The doctors discussed with us ACTH as the medicine to try and stop them. ACTH is a steroid. Treatment is over weeks and the dose is decreased slowly until eventually being stopped. If it works this could be FABULOUS for Riley. As it is now her EEG is pretty chaotic. ACTH could help to bring it back to normal range. I am hopeful that this can be accomplished. And I am asking for your prayers and good thoughts that this DOES happen. If not I am not sure what we'd do next.
There are side effects, as with any medication. Riley will become swollen over the next few weeks. Will probably look a bit like a marshmallow. But, that will all go away over time. She'll need to be closely monitored for higher then normal glucose, any bleeding and we'll test her blood, urine and stools. This medication is not something you mess with. You can't miss a dose or mess up the dosage instructions. We'll leave here with specific notes.
It's an inject able so we've already started practicing on an orange on how to get it just right. Thankfully, we have 24/7 nursing that will be helping with all of this.
Now here comes the crappy part. ACTH is expensive. Some articles I've read list doses at as much as $20k a pop. We have insurance so that's not the issue it's the bureaucracy of having it approved. Before we are allowed to take Riley home the meds need to be at our home and we need to bring them to CHOC to prove we have them. They don't mess around. It's anyones guess when that will be.
The case manager is already all over it and trying to get things moving as quickly as possible. We hope to be home Monday possibly Tuesday at the latest.
The first ACTH dose will be tonight. Riley can come off of the continuous monitoring tonight! Yay for being able to hold her! She just fell asleep though so I may have them wait until morning. It's going to be a goobery mess when the probes come off!
Over the next few days Riley will be closely monitored to see how she reacts to this medicine.
Riley's immune system is going to be very vulnerable for the next few months. Anyone coming to our house needs to be sickness free and we'll be instituting a mask policy in Riley's room. This is going to be the hardest part of all of this especially as we are gearing up for flu season and the weather is changing. Another thing I tried to joke about with the neurologist. You know how kid's in school are in a germ factory. Yeah he didn't get that one either.
Tomorrow I have to make the phone call to Riley's audiologist to let her know we need to postpone her CI surgery. We had finally made progress and were once again ready to have a consult with the surgeon in 2 weeks and now this. Thankfully, I know we can still have it done after this but, I'm still really frustrated! I am happy to say that once Riley is able to have the surgery it will be done at USC!!!! It's pretty obvious the love I have for anything and everything USC so this is one development that has had me smiling ever since all of the pieces to make it a reality fit together!
So what's next? Not too sure right now. Start the med and wait. Beyond that we're hunkered down at the hospital. Thought we'd update all of you though and once again thank you. I know I ask a ton and hopefully it's not too much but, your prayers and good thoughts work. Riley could use them again. I just pray this is the answer for Riley and the beginning of good things.
And not to be forgotten is the CHOC Walk. Unfortunately, Riley will not be able to attend. We however will still be walking. In fact as of tonight we are at a little over $13,500 raised!!!! Which means we will probably pass the $15k mark by Sunday. So thank you to ALL of our supporters.
As I sit in room 515 watching Riley sleep it only reminds me why we are walking. Riley is in good hands. Actually, great hands and there is no other place we'd rather be.... except maybe home.
Dave, Megan, Logan , Mason and Courageous Riley