At the Top of our Roller Coaster

Right at this moment we're doing good. Landon woke up happier today, yesterday was rough. I haven't gotten any messages from school, that's always a good sign. I have yet another new route to get past these insurance road blocks, and this route was actually given to us by the insurance company. It seems our roller coaster is at the top of peak right now. here's to hoping it plateaus for at least a little while following this peak. This is probably about the 10th peak in the last 7 days, and to be honest my stomach cannot take any more high acceleration plummets towards the ground. 

So we are, hopefully, at the root of our problem with a solution in tow. The out of state doctors have agreed to write their justification of why the testing they want cannot be done at other facilities and why they refuse to interpret the results if it is. They will then send that to one of our in state doctors, who can then add their own justification letter and send both into the insurance. Given the insurance already told me this is what we have to do in this specific situation, I'm hoping this will work.

The one thing I'm still struggling with though, is I still had to ask his primary doctor to help us once again with this. He's done A LOT recently, and I can tell he's reached his breaking point. I did leave it up to him on whether or not he was willing, or if he even thought it'd work for him to be the one sending it. In general it'd be better for the in state neurologists to send it, but they pretty much refuse to help us with this issue at all, stating last week that insurance had already told them no matter what they do they'd be denied. I came to find out by contacting insurance directly, this had not been the case.

In fact it seems I'd be better off driving 3 hours for a pointless office visit with the in state neurologists because at that point they wouldn't have a choice not to listen. If it comes to that, I very likely will have to. 

So here we are still fighting for our son to see the best doctors possible for his problems, something that I don't feel would be any different for any parent with a sick child. I just hope we can figure it out and get him back there. There are some pretty big decisions that might have to be made if we can't get this situation to work for us, and none of them are particularly great for our family, but if it comes to that I think we've both decided we have to do what's best for our son...even if that means breaking us apart for a period of time to do so. 

I just hope all of this fighting will pay off soon here, and we'll get Landon what he deserves.

My Son's Best Advocate

"You are your child's best advocate."

That's what everyone keeps telling me. If ONLY it was as simple as that phrase makes it sound.

In the last few days I have learned just how absolutely difficult that is. In the past week, I have emailed my son's pediatrician 7 times regarding this matter and 5 times regarding other health concerns. If you wonder if we drive him crazy, the answer is yes, although he's never told us that.

I have also called the in-state Neurologist's office twice, but talked to them on the phone 4 times. I have talked to the out of state Epileptologist's office 3 times. Called our county social services twice, the human services center twice, and the Insurance company 3 times.

I've emailed 5 local legislatures, 2 Senators and a State Representative. Two of them have contacted me back, one by phone and one by email. I've talked to one local insurance business owner, who has a son with special medical needs, 2 other advocates referred to me by parents of other kids who have epilepsy, and about 6 other parents of kids with epilepsy. I've signed my son up for the local epilepsy foundation, emailed back and forth 3 times with a representative from there and she is calling me this afternoon. Also the human service center lady and insurance are supposed to be calling me back this afternoon. There are still 2 other people that have been recommended to me that I am waiting to contact until the rest of these people call me this afternoon.

You know who HASN'T talked to me, the doctors who put us in this position in the first place. The medical doctor that consults for our insurance and denied my son's out-of-state claim. The doctors who sent us packing last February and refused to see my son in April stating they don't know how to help him and there's nothing they can do. It is those in-state doctors who made us fight for 6 months to get my son seen out-of-state at an Epilepsy specialist the first time, after they refused to see him. However, the out-of-state doctor needs more tests to help my son and the insurance doctor refuses to let us be seen there again. Insurance states my son could have these tests done in state, coordinated by the very same doctors who have previously admitted they can't help him. When I ask the insurance company what I can do to prove my son needs to be seen out of state, they tell me to have our in-state specialists write a reconsideration letter. Meanwhile the in-state doctors inform us they cannot send a letter of reconsideration to the insurance because the insurance doctor already told them no matter what they send, he's still going to deny my son services.

So here we are, after fighting 6 months to be seen out of state for a 2nd opinion, unable to follow through with that 2nd opinion because the insurance will not approve the testing my son needs to have done in order for that doctor to decide anything. We're stuck with the same doctors who I rightfully don't trust after telling us they don't know what to do for my son, refuse to see us, and hardly communicate with us . Meanwhile my son continues to develop new problems and have old problems treated within the limits of his pediatrician's ability because insurance doesn't want us to go anywhere else. His pediatrician is wonderful, AMAZING, honestly the only one on our side right now, but he's also reached the limits of his abilities. My son is falling frequently, having behavioral problems, experiencing memory loss, and again not consistently sleeping well through the night, plus a whole list of other things. Although all kids can do these things, these are red flags for him and for many other kids with epilepsy.

I'm exhausted, physically and mentally. My other son has also been sick this week with typical childhood "junk" so is also not sleeping well, demanding more attention and was running fevers and required his own doctor visit. I'm still on the phone also scheduling evaluations for my son, and brought him to an appointment last Friday, one appointment this week and 3 appointments next week. His brother also has 2 appointments next week. I myself had 2 this past week for other unrelated problems. I also worked 16 hours and besides missing 1.5 days of class to take care of these things, attended doctoral school all week, completed homework and had an exam  today for which I was up all night studying.

So you see, Mr. Insurance doctor who's never met my son, you have left me at no other option but to exhaust myself and continue to fight trying to fix the fact that you don't take the time to find out the whole story behind my son's request. The request it seems you had decided was going to be denied prior to us even asking for approval. I will NOT take my son to doctors who have made it clear to me they can't help my son. I will NOT take him to doctors who should have been able to come up with this list of tests on their own, but sent us packing because they didn't. I will NOT settle for second best for my son because I AM his best and biggest advocate. The price I pay for that is steep, but the reward for that is a living, healthy and happy child, and you will NOT take that away from me.

Good News with a "BUT...."

We have been approved to take Landon out of state. I saw the letter today and was almost too nervous to open it. What on earth could they possibly say we need to do prior to approval this time? What excuse could the insurance make to tell us he still can't go? His Neurologist here has basically stopped seeing him, calling us just 15 minutes prior to our last appointment to tell us there was no point in coming in because there was nothing they could do differently.This after I'd left class early and was in the process of putting two cranky children who didn't want to leave daycare into our vehicle. Still, I thought for sure they'd come up with something to deny the request yet again. They didn't, he's been approved!

Like all good news we get however, it comes with a "but..." He is approved "but" for some reason they approved him to go to a group of Neurologists he's never been to. We have had way too many problems regarding communication between his Neurologist and us too. This is probably because his Neurologist has actually become "Neurologists" due to a doctor who's only seen him a few seconds while he was hospitalized deciding he'd like to jump in on the case too. This has proven to create more problems than to solve any.

To complicate things more, when they sent my son's records they sent them to his previous Neuro that we'd seen before moving out of state. Now, I don't know where they actually want him to go. This is the communication issue I speak of. I'm sure one doc sent his files to one place while the other filed the paperwork for the insurance to the other place. I am not sure what I want for him at this point. I wouldn't necessarily mind getting a completely new perspective from a Pediatric Epileptologist. These are further specialized Neurologists who deal only with seizure disorders in pediatric patients. A lot of specialized training that I think would be good for him. However, I like his previous Neurologist, and with the plan still being to move back to the state when possible, that's probably who we're going to see again anyways. It'd be nice to keep her in the loop a little bit over the next couple years. All of these people are within one building however, their hospital rooms are only across the hall, and SHOCKER they actually communicate with one another. We'll see what happens though. If that's what we have to do to get someone who at least has new ideas and next steps, then we'll do it.

There is also currently a limit to which he is approved, and they call it a "Final consultation" for Epilepsy diagnosis and management. I really don't know what that means. If it means 1 visit at which point we can't continue following up with this individual, I'm not sure I'm ok with that. We were told to inform the doctor that we'd like to continue seeing them, and ask if they could put it in their note to continue following up there. At that point his pediatrician, who has more sense and communication skills than his 2 current Neurologists combined, can justify further out of state requests. It is a paperwork nightmare, but anything for my guy. So, with our good news, we basically just have more questions to be asked, more phone calls to be made, more phone tag to be played, and ultimately more doctors to annoy to get our answers. 

I've determined the life of Epilepsy is always going to be, Good news with a "but..."

Our Baggage

"He has epilepsy, asthma, sensory processing disorder, a speech delay, and a fine motor tremor as well as an assortment of other difficulties that are sure to affect him during school."

This is one of the opening sentences in my email to my son's school that he'll be starting kindergarten at this fall. As I proofread the email before hitting send, and re-read this line all I could think was, "yep, that's ALL I'm dropping off at your door come fall. Just those things. Let it be known...."

Granted we've already been informing them of all that is him for the last year, since moving to our current location. He's had several screening's and evaluations. The system here feels its not necessary for him to have an IEP (Individualized Education Plan), regardless of the fact he's borderline every test and the tests are clearly catered to the best interest of the public school system, and of course tax-payers money. Not to get into politics or anything. They personally feel it is better to wait until a child has not mastered a skill that 90% of kids that age would have mastered and then add a year or two. Since about 50% of kids probably attained that skill by a year or so prior to the 90% criteria, by the time they even look into giving services, my child would be 2-3 years behind 50% of his peers and at least 1-2 years behind 90% of them. Sorry, that's not good enough for my child.

So we do private services, and they put him 1-2 years behind in several areas already. He's been going for nearly a year and after the re-evaluation they just completed...there's no end in sight yet. Again, different tests probably catered toward approving more kids so they can receive more money. However, I'd rather gamble with my money than my child's future, so he goes to private services. The school system also made it clear to me, within the same sentence as telling me he doesn't need special services that I should MOST DEFINITELY continue the special services they so conveniently don't have to pay for. So he doesn't "need" it...but definitely "do" it. I've been looking forward to those backward answers since the day we started this journey. FINALLY the time is here, and I'm almost as excited as I knew I wouldn't be. 

As a recommendation by the individuals who evaluated my son, we should still complete a health care plan and make arrangements to meet with his specific school staff prior to the start of school. So here I am writing an email that really could be a novel or two. After moving, his new pediatrician's hand gestures describing the size of the package he received containing all of my son's medical records goes to show that we really could start a book series.

In a few days I'm sure I'll get a reply with a full list of things we need to complete over the next two months. Since it's the best we can get for him at this point, I intend to make them do every single one and more. If I had any more ammunition I'd be fighting for even more at this point, but since he's never been in a kindergarten classroom, I can't much say exactly what he's going to be like. Plus I have insurance companies to fight with and doctors appointments to attend. It would be terrific if he surprised us all, missed no school, had no sensory problems, no behavioral problems, and no seizures the whole year. That would be wonderful, but reality has shown me that's really not our life.

The anxiety has been steadily rising for at least a year leading up to his first day. The day I've seriously wondered about since diagnosis (and honestly probably before). There's been times I didn't know if we would all make it here together. Thankfully we have, but THIS is epilepsy. This constant on edge wondering about the next step while we're still waiting for all 3 steps before to be completed. Fighting for our son to make sure he's getting the best possible care in all areas. Informing every person he comes into contact with about his "novel", and then instantly evaluating their responses to judge whether or not they have a high enough "reading level" to handle it.

It is not easy dropping a semi full of baggage onto every person who has to care for him. It's definitely not fun seeing the faces and reactions many people have just when hearing the word epilepsy. Then as if that face wasn't enough, you should see the one when you describe how to administer a rectal rescue medication to a child having a seizure. And there's always the infamous, "Epilepsy....that's seizures...right?" Why yes, yes it is...it is definitely seizures AND so so SO much more. 

Epilepsy is literally a pile, a heaping pile, of baggage we get to hand to every person who comes into contact with our child, and then all we can do is hope that the person receiving this baggage can not only handle it, but also look past it to see the amazing child beneath it all.

Don't Judge What You Know Nothing About

Since I got home from class today I've:

1. Taken one child to OT and Speech. 
2. Made a trip back to school quickly to handle a situation that could've been handled in person the hour earlier, but hey, who doesn't have the time for this?
3.  Drove back, picked up child from OT/ST to get his blood drawn for genetic testing. 
4. Held screaming child who literally was crying, "SOMEONE HELP ME" while getting his necessary blood draw. 
5. Feel like a terrible mom holding child down.
6. Started towards the grocery store to buy supper
7. Detour to home half way there due to the other child coming down with a nearly 105 degree temp and screaming non stop
8. Called the doctor 
9. Helped while the second child threw up
10. Lost patience with 1st child who was just being 5 at a moment when being 5 wasn't helpful
11. Felt like a terrible mom again
12. Let 1st child play video games as a reward for blood draw and because keeping your cool is nearing impossible 
13. Talk to the doctor on the phone 
14. Head for the clinic
15. Put child in car seat
16. Remembered we should probably bring a bucket with us and called dad to bring it down. The 20ft walk was too long and as if scripted, child #2 vomited all over his car seat. 
17. Took him out of the car seat 
18. Changed him in the back of the car while dad adjusted the older child's car seat to fit
19. Pulled the soiled car seat out and handed to dad
20. Drove to the doctor with screaming child
21. Walked into the doctor with screaming child, and checked in. 
22. Child smell like vomit, feel like a bad mom for having the vomit smelling child
23. Sat in the waiting room with screaming child and a vomit bag. 
24. Fell like a bad parent while others glared over at my inability to calm screaming child
25. Went back to talk with the doctor...fever still 102 and he's writhing in pain.
26. Attempted to understand everything the doctor told me. We had an obvious communication barrier of background noise. 
27. Picked up screaming child, blanket, sippy cup, AND routing slip to go to xray
28. Felt like terrible parent as we got glares from the entire hospital on the walk to xray
29. Sat with screaming child in xray waiting. 
30. Felt like terrible parent as we got stared at in xray waiting
31. Undressed screaming child to prepare for xray. 
32. Held down screaming child for xray.
33. Feel bad as child yells your name to hold him and you can't.
34. Picked up screaming child now wearing only a diaper, his clothes, blanket, sippy cup AND routing slip and headed to lab. 
35. Feel like a bad mom while walking through hospital with now naked child
36. Greeted the lab people we'd just seen 1.5 hours earlier with a different child. 
37. Held down a screaming child while he got the necessary blood work (the same blood work he had 2 days ago). 
38. Felt like a terrible parent holding my child down to be hurt by someone
39. Picked up everything YET again, with an even louder screaming child and headed back up 3 floors to the waiting room. 
40. Sat in waiting room with a screaming child. This time we were the only one's there. 
41. Screaming child's medicine finally kicks in and he falls asleep. 
42. Mommy and now peaceful sweet little child nestled in for some very rare cuddle time.
43. I LOVE him so much. 
44. Actually communicated with the doctor about the fact that child will be ok and needs a prescription
45. Headed home. 
46. Dropped off child with dad 
47. Left home childless to go get something for supper and pedialyte. 
48. Feel guilty for leaving dad with sick child and crazy busy child
49. Bought pedialyte from the store
50. Gave up on supper ideas and had dad order pizza
51. Headed back to the pharmacy to pick up prescription
52. Picked Up pizza and went home. 
53. Came home to 2 tired/cranky/and hungry children. 
54. Feel guilty your child isn't getting supper until way past their bedtime
55. Bedtime routine for both children

I'm now lying on the couch with a "beverage" and breathing for the first time in hours...something I don't typically allow myself the time to do. And by the way my house is a disaster and sick child will probably still be up half the night. Oh, and the car seat still needs cleaning and I'm sure we will have more dirtied laundry overnight. So in 15 minutes the work will continue, because it has to.

When  you're judging someone else about their ability to fit right into "your" ideal schedule. When you're setting deadlines earlier than needed that they are telling you they can't make. When they literally tell you to please give them the work so they can do it. Please think about the fact that you know nothing about what goes into their everyday life. You know nothing about the balancing act that is raising two young children both with health conditions, graduate school, and work. You know nothing about the guilt that goes into not being able to be the perfect mom AND student because its not possible. You don't know that every morning I wake up after the average 3-4 hours of sleep (if that) and have to remind myself that its all for the best in the long run, because without that reminder I'd fall straight to the floor in tears. You don't know what its like to know that failing at this point would leave you with the inability to properly care for your children. You don't know how hard it is to stay upbeat, cheerful, and not want to bang your head on the table when you're sitting in class knowing your child needs you now but also knowing your child needs you to be in class. You can't possibly understand because you've never been there. Instead of judging and making assumptions, maybe communicate with them. Collaborate actually, because the person who can balance the above list of everyday life and feel mostly "normal" about it....can easily do what's asked of them if actually given the chance.

When the Grades Come In

Being a parent of young kids I would guess is always a difficult balancing act. Being a student and a parent seems to add just another ball to the stack that you are balancing on. By the time you add Epilepsy (or any other chronic health condition), I picture us all standing on 3 balls (each stacked on top of the other) with a flock of birds flying in all directions, hitting you from every angle...and OF COURSE the phone is ringing, and it's the doctor you've been trying to get a hold of for 2 weeks. Somehow answer it without falling off the balls and you've come close to accomplishing what "typical" every day life is like for too many families. I don't even have images for when things become atypical, pure chaos.

As my final grades come in for another semester in what seems to be an endless path to earning a doctorate I have to remind myself of this image. I'm one of those annoying people who's determined to get all A's even though B's and even C's would get me to the exact same place in the end. If you don't like us, I don't recommend deciding to go into any profession that requires a graduate degree or higher, especially not one that is highly competitive, because you'll be surrounded by us.

I look at my final grades and this time I'm trying to remember everything that happened in the last 5 months of our lives. We've spent too many hours in the ER to count. We spent 10 days admitted in the hospital, on I think what has been a largest roller coaster yet. We were transferred 3 hours away from home, at 1AM (just 5 hours after being discharged) with nothing but the clothes we were wearing and a cell phone. We were in same day surgery, and had an overnight hospital stay
following surgery. Instead of spending all nighters studying, I many times was juggling studying, taking care of a teething 20 month old and chasing the 5 year old who refuses to sleep back to bed. We spent 5 hours on our bathroom floor one night, with a 5 year old who literally was trying to physically run out of his body away from his pain, going in and out of seizure activity, and a mommy who was doing everything possible to keep the bucket nearby and convince her poor boy that he really needed to take the medicine to feel better.

We've fought with insurance companies, called doctor offices to remind them they STILL need to fill out paperwork so that we can call the insurance company again and remind them to look at the paperwork, so that we can then AGAIN call the doctor to tell them what the insurance company said, and remind them to fill out the additional/new paperwork the insurance company now wants. We've visited and talked with the school system, and gone through several testing appointments in order to get ready for the soon approaching Kindergarten. We've dealt with countless typical childhood illnesses in amongst all these things. We also go to a minimum of 2 therapy appointments per week, usually 1 doctor appointment of some sort (check up, pre-op, follow-up, or acute illness) and someone has to have a job so work too. Oh yeah...and do we need meds refilled...who's going to the pharmacy today?

I've emailed our doctor so many times we actually joked today about the fact that the 3-5 messages that for some reason have not made it through the messaging system are statistically insignificant. We haven't lived in this area for even a year, but literally the entire Children's floor of the hospital and
clinic knows both of our kids - not just by name and face, but know everything they're into. It's amazing how Ninja Turtle and Pokemon things suddenly appear at the hospital whenever my son is admitted because the nurses and doctors are absolutely amazing.

I remember all of these things that "we" went through, and really I have a hard time saying "we". The people who go through these things are my children. One more than the other, but they are both affected. My 5 year old child who comes up with one request before surgery,and its to have his IV placed anywhere but his hand so that he can easily play his video games. My nearly 2 year old who has spent so much time in a doctors office he's already picked up how to use the scale, thermometer, blood pressure cuff, pulse ox, stethoscope, and otoscope. These kiddos have SO much to go through, and they stay SO strong. That's how I get through it. I'm asked often, and that's how.

It's because staying up all night studying, having 2 finals, a presentation and 2 assignments due in one day, working 12 hours during the week and 30 hours over the weekend, or any of the other million things on my list, could NEVER compare to what my kids go through. They stay strong, so I owe it to them to stay strong myself. Let's be clear, this doesn't mean I don't melt. Tears have been known to escape while I'm holding my son down post seizure, coming off of valium, and he's getting his 5th IV stick and they missed again so they're digging around, and all he can scream is "I'm done!". They came out the

night we ended up back in the ER, 5 hours after being discharged, and they come in to tell us the ambulance he just got off of will be coming back to emergent transfer him to the hospital that 2 days prior had cancelled his routine transfer because they were "full". I barely held it in the time my son's pediatrician who had obvious bags under his eyes came into the ER room from his home to specifically see my son, and then he stayed and helped hold as they tried and tried to put in an IV, and I don't even know why that one hit me so hard.

I owe it to my kids to keep going because they're being stronger than I could ever be and they're too young to even know what strong really means. They keep fighting, so who am I to give up? Everything I fight for will change their lives for the better and they're SO worth it. So, now when I look at my grades I try to remember that all that matters is that we're still all getting by. We're still all fighting, and it's all worth it for them.

"Innocent" Comments

First I have to say...this blog is taking a long time to accomplish. We are living our lives and its been nuts. But this is just something I needed to get out there.


~

Need to get something off my chest. After we got out of the hospital today I had a run in with another mom at the pharmacy...just a random acquaintance I don't even know her name. We were both waiting and I said something about my son just coming home after surgery. She asked why, so I explained he had his tonsils out. She goes, "And they kept him over night?!?"

This did not surprise me, as just about everyone I've told since knowing about his surgery has been amazed by him staying overnight. I just explained that yes he stayed overnight. He has epilepsy, and that puts him at higher risk.

She gave me this face, like she couldn't believe it. Then said, "I would've paid to have them keep my child and they wouldn't." ....

While I know this was an innocent statement made by someone who couldn't possibly understand it has been bugging me all day. Really, "you would've paid" to have your child in the hospital? Like somehow we're the lucky ones? I wanted to say, "do you realize this was his 4th hospital stay since September?" Heck...do you realize I know many families who would beg to have only our 4 hospital stays because they're there once a month or more...or for months at a time!

I didn't, of course, but sometimes I just want to. The eye rolls when I miss class (YES AGAIN!), or have to ask someone to work for me (YEP...AGAIN!)...and the "innocent" comments by those who have no clue. But to survive in this world we're told to keep our comments to ourselves. Be the bigger person, and walk away...Right?

Honestly, I'm not sure this is the best policy anymore. Maybe next time I'll tell the person EXACTLY what they need to be thinking about before opening their mouth.

Please Be Patient

I am currently living our journey and new to the blogging world.

Please be patient with me while I figure this all out. I have started to post his story. I will continue his story, including the point at which we found out he had epilepsy as time allows. Until then I will probably also start posting our general every day life.

Thanks