Stoma Closure Soon!

Harlie is doing great.  I took her to her 9-year old well check with her pediatrician yesterday.  And I think it was the shortest well check appointment she's ever had.  There was nothing to discuss, really. I can't tell you how great that feels!  She had to get a flu shot.  She can't get the mist because of her medical issues.  And when she realized she was getting a shot, she lost it.  That girl is a fighter, through and through.  And she is done with getting poked, I can tell you that.  It was not a fun experience for any of us.  It's not the shot that gets her, it's the anxiety and fear of what's going on that does.  It looked like an episode of PTSD, to me.   Poor kiddo. For as happy as she is, she still has too many bad experiences and memories to go with them.

She now weighs 48 pounds and is 46" tall.  She is not on the chart for height.  

But, health wise, she's doing great!  We went to DC to see her ENT on September 9th.  Here we had been thinking that her stoma (trach opening) was closing nicely, and the first thing her doc said was, "Wow, that hasn't closed up at all. I bet I could get a trach back in."  Please don't, I thought.  I had to laugh.  I guess you see what you want to see, so we thought it was tiny.  Oh well.  

The good thing is that he said he needs to close it.  I know in some cases they wait a while.  But, in hers, it is a pain in the butt.  It leaks really bad and it makes an annoying sound most of the time.  It rattles because of the secretions.  Plus, it really reduces the clarity in her speech.  He said his OR schedule was about two months out.  But, when they called me to schedule it, he had an opening on October 9th!  Woohoo!  That's a Friday, and she will stay in the ICU at least one night. 

Tom and I are signed up to do the Rugged Maniac on the 10th, but stoma closure is way more important.  Plus, I don't like to get dirty when I run.  So, to be honest, I wasn't that upset I would have to miss it.  

This will be Harlie's first time going under anesthesia without her trach.  And her mouth doesn't open very much (it's hard to get a spoon with yogurt in her mouth, it's that small).  So, she cannot be intubated as normal.  So, they are going to have to try some other ways.  As far as the surgery goes, he doesn't just stitch up the hole. He has to actually remove all the scar tissue that's there, so the fresh wound will heal on itself, basically... I think that's what he said.  And he said that she will come out of the OR with a small trach in.  We will wait for her to wake up and then we'll decannulate (take the trach out) again.  I told him I was so glad he told me that.  I would have been really upset when I saw her come out with a trach!  

Anyway, we've been counting down the days.  Then yesterday, I got a voice mail from our nursing agency that said our Medicaid waiver (Harlie went on a different waiver after the trach came out) put us on an Optima insurance policy.  I listened to it as we were rushing out the door to go to her well check appointment.  And I thought, okay, whatever, as long as she has Medicaid, those are details I don't care about.  Moving on...

Then, a few hours later, I got a call from Harlie's ENT office.  She said that they were working on the insurance approvals for Harlie's stoma surgery and that the hospital doesn't have a contract with Optima!  WHAT?!  Yeah, that's a problem.

So, in a panic, I start making some calls.  Apparently, we were just put on this Optima plan as of October 1st.  I HATE paperwork, and I get a lot of it.  So, I dug through my pile, and found a letter dated September 23.  It doesn't sound urgent at all. But, it says that we are going to be put on an Optima plan as of October 1st, and if we would rather be put on a different plan (it included a brochure for several different plans) we had to notify them by September 30.  Hmmm, so they printed the letter last Wednesday.  Maybe it went out in the mail that day, maybe the next.  I might have gotten it by Friday, which might have given me two business days to make a change.  I'm sorry, but I do not look at all my paperwork in that kind of time frame.  Nor have the time to call all of her doctors/hospitals to see what plans they accept.  So, crap.

In the brochure, each plan (Anthem, Optima, etc.) lists the facilities that contract with them.  There are four plans and not one of them contracts with Children's National Medical Center in DC.  It is the only major children's hospital around here.  So, I asked her which plan contracts with CNMC and she said, "It's not in Virginia, so none."  Now, I get that it's technically not in Virginia since it is in the District of Columbia.  But, seriously???  I can tell you for a fact that CNMC sees plenty of Virginia Medicaid patients.  What the hell?!  I called Harlie's ENT office and asked her if they take Anthem, and they do.  So, that's weird.  Clearly, they don't want the average Medicaid recipient to know they can, in fact, go to CNMC.  Damn, it's hard to need specialized services - in EVERY area (medicine, education, etc.)  It feels like the services are there, you just have to work hard to find them.

So, I explain my situation, and shockingly, she appears to be sympathetic.  She told me who to call and after a few more phone calls, I get the right person on the phone.  I'm thinking that I can switch to Anthem.  But, that switch won't be effective until November 1st, which doesn't help me on October 9th.  So, the nurse case manager with Optima put in an "urgent" request for review for an out of network approval.

I don't want to move this surgery back.  Not even one day, much less however long it would take for me to reschedule it.  We are going camping in a few weeks and the thought of trying to keep Harlie's stoma clean for three days in the woods, around an open fire, with no running water, sounds downright impossible.  It would be awesome if it could be closed, and all healed by then.  Now I just have to cross my fingers that it gets reviewed, and approved before Friday.

Plus, Harlie is ready to go back to school.  But, I am not sending her until that stoma is closed. I have realized that Harlie gets more stares with a hole in her neck than she did with a trach in her neck.  A few weeks ago, we went to Kings Dominion for the Altria Friends and Family day (my niece works there and gave us her free tickets).  I want to post more about that day soon.  For some reason, I found myself surprised with the staring.  Harlie was on a train ride in the kid area and a little girl was in the car right in front of Harlie.  So, Harlie was the first one in our car, and the girl was the last one in her car, putting them close together.  That little girl stared at Harlie the entire time.  I know people have to gather information, and that most people have never seen someone with a hole in their neck, but come on.  Even a parent couldn't look away when we were standing in line.  I get it to a certain degree, but I'd much rather them just ask me what's going on.  I'm always happy to share and educate others about Harlie.

Anyway, since Harlie wants to go to school for the first time, like ever, and she's currently super proud of her naked neck, I don't want her to go and get negative feedback from other students.  I feel like we're in a delicate mode of progression regarding her education, and I don't want anything to disrupt that.

Speaking of... I can update you on her education, too.

On September 24, we had a component meeting for her upcoming IEP meeting.  Last year, while on home bound, Harlie's teacher came to our house during the morning/early afternoon.  And that worked out great.  The boys were at school, the house was quiet.  And elementary aged students have proven to do better learning in the am.  So, all was good.

This year, her teacher is not allowed to come during the school day. This is another area where it is a struggle to get the specialized services you need.  I don't understand the way it's set up or why this isn't allowed, so it makes it very difficult for me to solve the problem.  So, she now has two different teachers that come to the house, AFTER school hours.  This has proven to be very challenging and not nearly as effective.  The boys are home from school, and two days a week, I have to rush Cooper to swim lessons at NOVA.  Since I have to take Harlie with me (it's after Brandy leaves for the day) and we don't get home until 3:30, her school day doesn't start until after that!  A kid with no barriers in learning would have a tough time learning under those conditions!

So, during the meeting, I gave the team an update on her medical situation and explained that I would like to try to send her back to school after stoma closure/recovery.  There are some challenges, though:

1.  Her endurance.  So, we are going to start with half days first.  And go from there.  We'll add more time/classes as she can tolerate.

2.  Potential sickness.  She was sick all the time when she was in school last.  So, I want a plan in place for her to quickly get services at home again, should she need them.

3.  Nursing.  As of right now, I don't have nursing coverage Monday through Friday.  So, I don't know that I can even send her every day.  So, I would like to be able to send her when I can, and on the days I can't, I want them to come to the house - during the school day.

4.  School hours.  Until I can send her back to school, I want to change her school hours from after school, to during normal school hours.

5.  Grade level.  She is technically in 3rd grade this year.  But, developmentally, she is not as far along as typical 3rd graders.  She is really struggling to learn how to read and all of her education is on a 1st and 2nd grade level.  So, I don't think it makes any sense to put her in 3rd grade.  She won't be able to spend any time in her class anyway.  She'd have to be pulled out for all of her learning.  So, what's the point?  And making friends would be almost impossible, considering they wouldn't be together during the day.  My argument (and desire) would be to put her in 2nd grade, again.

So, they are working on those things and hopefully, all will work out the way I want, which I think would be the best for Harlie.

She really is making a lot of progress, overall.  We used to have to make her respond to a "Hi Harlie" greeting by saying, "Hi" back. Every time a student would greet her, she needing prompting/instruction to respond or wave back.  This went on for YEARS.  Well, on Wednesday, I took her into Cooper's school to pick him up to go to swim.  While we were waiting for him a little boy came into the office.  She said hi to him - unprompted.  Then as we were leaving, she waved to a little girl in the hallway and then said, "Mama, I waved to her."  That girl seriously cracks me up.  She knows darn well that we've been working on that for years and she wanted me to know that it finally paid off.

I think she's really proud of herself.  Which is also why I don't want to put her in a class where she knows she doesn't belong.  She's smart enough to know that she's not on the same level and I think it would be detrimental and never ending.  Every year would be the same.  I think she has a way better chance of "catching up" if they put her in 2nd grade this year.  I know schools have a problem retaining kids more than once.  Typically kids get too big for the grade.  But, as luck would have it, that's not an issue for Harlie.  She is the size of a first grader, so she will still be on the small side of a 2nd grade class.

So, we'll see what happens.  My fingers are crossed that her team, and whoever is higher up in the chain that has to approve of going ousidet of the box, see that my requests are reasonable and in Harlie's best interest.

Well, that's it for this post.  Hopefully I'll have another post soon.

Thanks for reading!
~Christy xo

Insurance and Hearing Test

I hardly talk about insurance, as I try not to think about it myself. Although that is difficult when I receive several Explanation of Benefits (EOBs) every single day. Literally, I receive anywhere from one to five EOBs each day. I just open them and put them in a notebook. Until that book becomes too heavy, then I archive the oldest ones, and start again. It's really quite ridiculous.

Today I received something a little a different. The letter says:

You are receiving this letter because the claim for the medical services listed above (claim number) was submitted to (Insurance Company) with a diagnosis for a type of treatment frequently found to be related to an accident or other trauma.

So, I think to myself, "What in the world are they referring to?" I look and it says "Children's Hospital".

Hmm, I'm sorry, but you're going to have to be more specific.

I can only chuckle at the fact that when I get a letter like that, that I have NO idea what they are referring to. Yes, there have been that many procedures, surgeries, and appointments. And it doesn't help that we frequent THREE different children's hospitals.

So, yes, you are going to have to be more specific.

After closer examination it says it's from Virginia Subrogation Services. I looked up "subrogation" on the internet and got this definition.

Then I said, "Huh?"

I searched again and found this explanation, which makes a lot more sense:

Suppose you’re in a car accident and it is clearly not your fault. Your car is wrecked and your neck and back have been injured. You are covered for both the damage to your car and your personal injuries, and so you call your insurance company and they pay all of your expenses relating to the accident. Later, your insurance company, realizing that the other party at fault also has insurance that will cover the damages, seeks out reimbursement from that insurance company since its insured was actually at fault for the accident. This is called subrogation.

Hmmmm.

Guess I'll be calling them soon. You know how I am about making commitments. Besides, it says I have 25 days to respond!

Ahhh, life with a medically fragile child is never dull.

On another subject, Harlie had another appointment for her hearing aid today. It was her first one since the beginning of February.

She was tested in a sound booth. She sat in my lap and played with some toys on a table in front of us. Ann would speak to Harlie and the sound came from the speaker on Harlie's right side (the side that her hearing aid is in). She would start at a low volume and would get progressively louder until Harlie looked in the speaker's direction.

Even though I perfectly know that she is hearing impaired, it STILL felt weird to hear things that she clearly, could not. Ann spoke to her, asked her questions and made funny noises all at different volumes. Then she played a static kind of sound or a shhhh kind of sound.

Ann said that she did really well. Although Harlie had enough after several minutes and signed "all done" and got down from my lap and that was that. There was no chance of getting anymore from her.

The results show that her hearing is definitely improved with her hearing aid. Which is pretty obvious in our day-to-day life (yay!). Ann also said that Harlie seemed very different than she has ever seen her (signing more and making more sounds). And we all couldn't agree more. Harlie is a completely different little girl than she has been since her jaw surgery in mid-December. Ever since mid-February when she got those wires out (and treatment for the bone infection began) she is so much happier and more cooperative. She must have been so uncomfortable for those months she was wired and infected. If only she could tell me when she's hurting!!!

We will go back in three weeks. We might have to take another mold of her ear. While she wears her aid all her waking hours now, it falls out a lot. Ann said that she has a VERY tiny ear canal. Like the size of an infant's ear canal. Still! And I've heard this from her ENT, as well. It really doesn't seem to have grown much, if at all, since her birth. And it's information like this that makes me close my eyes, shake my head and wonder when this is going to bite her in the butt. Because I know it will. It will have some adverse affect on her. Her jaw didn't grow right and is too small. She's had two jaw surgeries, and her jaw is still too small. We need her bone to grow. GROW! And the problem areas in her jaw and her ear canal are right next to each other. That area just doesn't want to grow!

Well, tomorrow we are headed back to Norfolk for her weekly appointment with Infectious Diseases. I'm anxious to see if she handles it any better this week. I'll certainly let you know!

Thanks,
Christy

Reduced Nursing Hours

Geez. I have a lot of updating to do!!! I'll just start - but things might not be in the right order. Oh well.

So, I don't talk about insurance, or money or that kind of stuff much. I'm not sure why. Honestly, I think it's because I don't want to be judged about how we get things done, paid for, etc. But I shouldn't be ashamed or embarrassed. And I'm not. So, here's the deal...

We have private insurance through Tom's work. It is not cheap. It is actually quite expensive. However, I feel that we get a HUGE return on our investment. For our monthly payments from Tom's paycheck - we have gotten millions of dollars of medical service. Not too bad if you ask me.

We also have Medicaid. I'm not sure what you know/think of Medicaid or those that receive it. But we qualify for Medicaid through the Medical Technology Waiver. What that means is that we qualify for Medicaid - not because of our income - but because Harlie is on life sustaining equipment. The costs that go along with that are insane. Seriously. And that includes skilled nursing as well.

When we first brought Harlie home, a Medicaid Case Worker (she's a nurse and is assigned to us) came to our house and asked a bunch of questions. She completes a bunch of paperwork. One of the forms is sheet that has points for certain things. For example, she gets 45 points for having a trach, 15 for being tube fed, an X amount of points for an X amount of meds, an X amount of points for being on oxygen, an X amount of points for being on a continuous feed, etc. The total amount of points tells them how many nursing hours for which you qualify. This review happens every six months.

From the day we brought her home, till now, we've qualified for 16 hours of nursing per day (not that we use them all, of course). We had our review on Friday, September the 4th. And our nursing hours went from 16 per day to 10 hours per day. Which, really, is a good thing. It means things are good and that she's getting better and less medically dependant. Wonderful!

But, it also means that we lose our night nursing. She let me give our night nurse (Dawn) a two week notice. So, we have until Friday, September 18th.

And honestly, I think I'm okay with that. I'm ready to have my house back at night. We have been so incredibly lucky to have found wonderful people that want to help Harlie, and us. And they have all been very respectful of our privacy (or lack thereof). Our house has been their house. They really have become part of our family. Dawn has been with us the longest. She started right around Christmas 2006 when Harlie was just three months old. Brandy started in February 2007. And Jennifer came on in the summer of 2007 (after having been one of her main nurses at MCV for two months right after her second heart surgery).

But, when Harlie wakes up after a bad dream, we - her parents - should be the ones to give her comfort. And I want us to be a regular family. At night. Being a regular family during the day - at this time - is impossible.

It's weird to think that after almost three years, we'll be completely on our own at night. Well, except on occasion. Like if we go out of town. Hey - I can dream, can't I? We do have respite care hours that we can use for special occasions.

Of course, should things change in Harlie's status, her nursing hours would change, too. But, that would mean that she's not moving forward. And that wouldn't be good. So, I don't want that.

So... a change is coming. We'll just have to see how it goes.