Just a Typical Mayo Day... Or Daddy Got Inked

Wednesday was our day for Spring Checkup!  Hi ho, hi ho, it's off to Mayo we go... or went.  It was a busy day.  It's a really good thing that the way the pre-appointment time was NOT an indication of how the day would go!!

We got off to a late start right away.  I hurried to unload my displays from the trunk so I could put the stroller in, keeping Raine moving and getting ready, packed the diaper bag, and let Daddy finish getting Sax ready.  Since we had to be there by 9am, our plan was to leave about 7:30am.   We had to drop Raine off at my friend's house since she couldn't be at the school before 8am, then dropped off some stuff for a client of mine and decided to hit McD's on the way out so Mama could get a Frappe and Daddy and Sax could get some food.  BIG MISTAKE!!! 

We got the Frappe and the OJ and were asked to pull ahead cuz they needed to make the steak for Daddy's burrito.  We waited...... and waited..... and waited.... and waited..... the worse part of where they want you to wait is that is where the smokers go to have their cigarettes, so even with the windows closed the smell of the smoke got into the car.  Finally we looked at the receipt to see if there was a time on it - we put our order in at 7:44.  By now, it was 7:59.  I sent Daddy in while I pulled the car around to the other side. 

Scot: Where is our food?
Lady: I gave it to you.
Scot: No, you didn't.
Lady: Yes I did.
Scot: You gave me the Frappe and the orange juice and asked us to wait.  Can I get a refund for the food since we're not going to get it?

She turns around and, sure enough, our order was still sitting by the window.  I don't think they would have ever brought it out!!!  So now we're already about 10 minutes behind (accounting for the 5 minutes it normally takes to go through the drive-thru).  We don't have time to deal with talking to a manager, so that got moved to Mommy's to-do list (and it got done Thursday, too!!)

We were cruising along pretty good until we got halfway to Austin and the roads started getting slick, so we had to slow down a bit.  Then when we got almost to 63, the car started acting up.  Daddy thinks it's the torque converter clutch solenoid (tcc).  When I try to speed up, the accelerator pushes back and the car doesn't want to speed up.  If I pull over, turn the car off, and let it sit for a minute, then it usually resets and works again.  Sometimes it resets and works without having to turn it off if I drive like that long enough, which is what must've happened because it started accelerating again ok.  That is, until we got off 52 and were heading to the clinic :-(  Daddy's going to see what he can do about that. 

We parked at the Damon parking ramp, as we usually do, and walked the subway to the clinic.  It never fails - old people walking 6 wide and slow down the hallway so you can't get around them, and stopping to take pictures.  Scot was putzing behind them, so I took over the stroller, said "EXCUSE ME" and speed-walked past them and the 3 blocks through the maze of subways to Mayo.  Saxon was beeping the horn on his steering wheel on the stroller the whole way too, so that helped and people got out of our way!!  We ended up being about 10 minutes late for our first appointment, which was with the social worker.  But that ended up being alright because she wasn't on 16 and ready to go either.  It all ended up working out.

Our appointment with the Social Worker was one that we had requested in addition to the other appointments we had.  We have been having a lot of trouble with our local Human Services office when it comes to insurance.  Our income has not changed even though I started a second job.  Between the 2 jobs I still make less than I had originally claimed on the initial application.  And Scot's income hasn't changed.  However, because I started the 2nd job, the case worker has been threatening to drop Saxon off the insurance because all of a sudden we're too close and are going to go over the income guidelines.  I don't understand this.  Plus she won't tell us WHAT the income guidelines are!!  So we asked the Rochester worker for some help.  She was able to give us contact information for an advocacy program for our county.  (I haven't had a chance to call them yet - but that's a whole different issue.  It's on my list of 'things to do' this week.)  I'm just so tired of the case worker calling and threatening us, then getting letters in the mail saying they don't have our info when I personally hand-delivered it prior to the deadline.

Our next appointment was with Vicki and Dr P.  They listened to him and asked questions about behaviors and appetites and stools and coughs - all the normal stuff.  We reviewed his treatments.  I suggested maybe increasing his CPT time to 25 minutes since it seems that things start loosening up about the time that his vest turns off.  Vicki said that was fine because eventually he'd move up to 30 minutes, so this is a halfway step.  She said there is no reason to do more than 30 minutes in any one sitting because the research shows there is no improvement with more time.  He doesn't seem to notice the extra 5 minutes anyway.  When it was time for Dr P to listen to him, Sax climbed up on the table and was ready to go like a big boy!  Dr P listened to his heart and lungs, and Sax took his big, deep breaths.  We mentioned how gassy Sax still seems to be, and Dr P said it sounded like there was quite a bit of gas in his abdomen.  It was decided that when we come back for his next quarterly checkup that we will see Dr E, the gastroenterologist.  There may be some digestive issues going on.  And when Sax is on his Zantac, it seems that he's a lot more gassy.  He's been dealing with a lot of gas issues since he was born, so we're not sure what to think.....

Sax has grown almost an inch since his appointment in November.  Of course everything is metric, but he's gone from 88.0 cm to 90.7 cm tall, which moved him from 30% to 36% for his age.  Like I said before, we knew he'd be short.  We have no control over that.  There was some concern over his weight though.  Since November, he has only gained .10 kg.  Ok, so it's a gain, but it's not much.. it's not enough.  With him getting a little taller and not gaining weight to go with the height, he has dropped from 61% to 53%. His BMI ranking has dropped from 83% to 67%.  We're happy he's still above the 50% mark, but he's getting closer and closer.  It's not helping that he's been so picky and not eating much lately!! (although last night he did eat green beans and steak!!) 

We didn't do a blood test this round, but probably will next time and recheck his iron levels.  Of course there was the throat culture too.  We haven't gotten the results of that yet, but I expect I should be getting those soon.  Sax is such a good boy when Vicki sticks the swabs down his throat.  He doesn't fight or bite down on the swabs.  He's also very cooperative when it's time to check his ears and nose.  Sax was told he's one of their best patients for that!! :-)

Our next appointment (and the last one Daddy was at for the day) was with the dietician.  We discussed options for increasing his caloric intake.  For his age (with his condition) his caloric need is about 2000 calories per day - which is what a normal healthy adult needs, to put things into perspective.  He loves his vanilla Pediasure, but that's not quite doing it.  Our dietician has requested a case of Pediasure 1.5 be sent to us.  One bottle has over 300 calories in it.  If he like it, we may be able to get that from WIC.  She said we can also add the Carnation powder to it, which we had been doing with his whole milk, to increase the calories even more, or buy the strawberry or chocolate syrup.  And butter.  In spite of what the WIC nurse says, butter is very very good for him.  Cholesterol is not an issue for him because to have cholesterol problems, you have to ABSORB fat.  He doesn't do that anyway, so we're just to disregard them. 

We're also trying something called Duocal.  The dietician has requested a sample of that be sent to us too.  There are 42 calories per Tbsp, so it's very close to the caloric content of butter (except without the fat and salt).  The Duocal can be added to his food and beverages and is supposed to add calories without changing the taste or texture of the food. (More info at http://www.myduocal.com/.)

Now, during all of this is when Daddy snuck away, but for good reason.  He is doing his part to help create CF awareness..

Daddy's new CF tat - 65 Roses and Saxon.  This is his left forearm where it can be visible year round, and he's more than proud to explain to everyone exactly what it means :-) 

Daddy made it back just as Mommy and Sax were getting into the car, so he missed lunch and our ENT appointment.  Mommy and Sax went to Red Lobster and had a nice date and were served by our favorite waitress, who just happens to always be working when we're there.  Unfortunately there really aren't many kid-friendly places to eat in that area.  We usually prefer to eat lunch early and avoid the crowds.  We didn't have that option this time because Sax's appointment didn't get done until noon, but we had until before the ENT appointment.

We saw Stephanie and ended up seeing Dr Cofer before we left.  Mommy's been a little concerned because Saxon's left side of his nose has been bleeding a little bit.  I told them he's been doing well with his Nasonex, but we haven't been doing the saline since we weren't told to continue with that one.  Stephanie looked in his ears - which his left tube still looks good and is open, and his right has healed nicely - and looked in his nose and though she found something.  She called in Dr Cofer and they decided to do another nasal endoscopy.  NOT fun holding down a 2 year old while the doctors shove a tube and camera up his nose, then shove a suction tube up there.  Poor little man!!  At least it didn't bleed much this time!!  The sucked some nasty boogies out so they could see better.  It was a pretty clear path too!! Only one little polyp starting to form in the left side, and nothing in the right!!  Yippee!!  Dr Cofer gave him clearance to come back in 6 months now instead of 3.  The only change she made to his routine is the addition of saline nasal spray once or twice a day to help clear out the nasal mucus.

So all in all, it ended up being a pretty good day of appointments.  We stopped on the way home and got a new pet (for Mommy).


My hamster Saxon named Mouse

So I'll leave you with some fun pictures from the past week.....

One of THOSE Days....

Today has been a day full of stress for mommy.... well, not COMPLETELY, but once the mail came, the stress set in....


I wasn't too surprised to see a letter from the CF Pharmacy addressed to Saxon - it would be a statement showing the charges for our last order of Creon12 along with the insurance payment totalling about $1200 (reminder for those who don't deal with the meds everyday - Creon is his enzymes for food digestion, and this total is for about 750 of them - almost a month's supply).  Which reminds me, it's almost time to reorder, but we'll wait until after tomorrow...  But anyway.  I opened it and checked it out and, surprise, there's a charge for about $1500 on there.  This SUPPOSEDLY was taken care of last month, and the month before, and the month before, etc....  I have been calling every month since August about these charges that should have been billed (and covered) by insurance.  And every month, our CF Pharmacy case worker tells me they're taken care of.  And the next month these charges reappear.  With the charges comes a finance charge too.  And a reporting of a past due bill (not that having a past due medical bill is such a major issue when you're dealing with as many medical bills as we go through - over $60,000 just for prescriptions the first year, closer to $40,000 this past year since no major illnesses, and over $100,000 in hospital bills for the first 2 years for Saxon -SOOOO THANKFUL FOR INSURANCE!) 


Again, what do I do?  Call CF Pharmacy and this time, I'm not dealing with the lady assigned to our case because obviously that's getting me absolutely NO WHERE.  I asked for the supervisor, verified Saxon's account information, and was put through to Michelle (which I have to note here because if I don't I'll forget her name for the next time there is a problem!)  I explained the problem and told her about how I had been calling once a month when the bill came and was continually told they were taken care of but they never disappeard from the 'patient responsibility' portion of the bill.  Michelle was going to check the account history and notes and call me back 'shortly', which only ended up being a half an hour later!  She asked who I had been dealing with.  I cannot remember the rep's name, but because our account is a Solvay Care account, we had a special case worker.  Michelle knew exactly who that was and said she was surprised that there were no notes on the account other than documentation of when we reordered our enzymes.  There was no record of me calling in about these charges.  She was very upset because every time they speak with a customer, it is supposed to be noted on the account.  Her train of thought?  Of course my call wasn't noted because the problem wasn't solved - which in all actuality she said only took a total of 15 minutes to clear up.  One problem up, one problem down!!! Yippee!!


The other piece of mail - addressed to me - made me nervous.  It was from Freeborn County DHS so it was something about the insurance - and the envelope was pretty thick....  I was VERY upset to see it was a 10-day notice of cancellation on the kids' insurance.  I called Patti - the case worker - right away.  I KNOW that all of the documentation and the proofs were at DHS because I PERSONALLY delivered them.  She had to check her pile and get back to me to let me know.  Well, sure enough, she found it.  Her reason for the letter?  Well, SHE doesn't sent the letters, they're automatically sent.  BUT the reason it was sent is because she 'hadn't gotten to it yet' to enter it into the system that the paperwork was received.  Major scare!! 


THEN she starts asking about my new business I just registered for but hadn't actually selling for yet and wants to know how much I make.  I don't know!!  I haven't even actually started yet - I just registered!  I haven't made ANYTHING yet!  Then she starts threatening that Saxon is going to lose his insurance because we make too much.  Between the TWO businesses, I'm not making what I originally filed on the application, so I really don't understand that.  Scot hasn't gotten a pay increase since we started gettin insurance for the kids, and I'm making about half of what I had guessed at on the application.  And I provided her with all the documents to prove it!  We have no worries about Raine losing her insurance because Scot's income doesn't count towards hers because I don't get child support for Raine and she's not Scot's biological child, although he treats her and loves her like his own :-) 


Anyway.


So, yup, I called Vicki.  I know there are guidelines that protect disabled children, which Saxon is considered because of his condition.  I asked her about getting us an appointment with the Social Worker at Mayo.  Maybe she'll be able to help us out.  I have done everything Patti has asked and provided her with every piece of paper she has asked for and then some,  and re-sent every document she has misplaced or 'not gotten'.  I have not done anything to give her any reason to think I've been misleading or lied to her, yet she threatens me about taking away the kids' insurance because she thinks I'm not being honest.  If I WASN'T being honest, I'd probably be getting a lot further. 


You know, damn those who do what they're SUPPOSED to do.  The people who screw the system and lie and cheat make it worse for the rest of us honest people.  All the more reason people should be REQUIRED to take a drug test to get assistance just like those who have to take a drug test to get a job.  I can't believe illegal immigrants can get assistance when the legal residents can barely get it.






A little bit of a rant again, I know.  But there are some things, like this insurance issue, that really get to me.  Another, for those who facebook, is people who constantly use 'FML' in their status postings.  So many of these are over the stupidest things!!  'Oh, I love him, oh I hate him, we've been together 2 weeks and he hasn't called me in the last 2 hours, FML!"  Drama over who-likes-who, mommy-and-daddy-took-my-phone-away, I-don't-get-to-go-out-and-party-tonight, I'm-grounded-from-the-computer, I-live-with-my-parents-and-don't-have-a-job-cuz-mommy-and-daddy-pay-for-everything-for-me-and=my-life-is-so-hard, I-don't-wanna-work-but-I-wanna-buy-toys-all-the-time, I-wanna-be-treated-like-an-adult-and-make-my-own-decisions-but-don't-wanna-be-responsible-for-my-actions.... Seriously?  This is FML rationale?  Some people need to grow up and realize what's important in life.


My out look?  I-left-my-well-paying-awesome-benefit-job-and-a-lot-of-good-friends-to-stay-home-with-my-kids-and-struggle-to-make-my-own-businesses-work-because-my-kids-are-worth-it-and-no-matter-what-life-or-cf-throws-at-me-I-can-make-it-through-and-I'm-going-to-do-my-best-to-love-learn-and-enjoy-my-life-every-step-of-the-way.  I'm-gonna-fight-to-take-care-of-my-kids-every-day-and-help-my-son-beat-his-life-shortening-disease-and-help-my-daughter-and-everyone-else-understand-and-do-what-I-can-to-create-awareness-and-try-to-keep-my-positive-outlook.


I've had a helluva day today.  I'm trying VERY hard to stay positive and to find the bright in everything.  Some days, like today, are harder than others.  It's hard to keep my head up and my eyes dry.  Not a complete success today.  Major anxiety attack after talking to DHS... But I'm making it through with the support of my daughter and my son and my amazing husband.  And I'm praying we're going to have a good day tomorrow with positive results at Mayo with all of our appointments - Dietician, ENT, Dr P, Vicki.  Daddy told Sax we're going to see Dr P tomorrow and Sax's response?  Yay!!  Saxy get toys!! :-)

Spring Cleaning

Oh, it's beautiful outside!!  The temps are up to the 30's and 40's this week - which is a big deal in Minnesnowta in February!!  Everyone's getting spring fever and thinking about airing out the house, along with the cleaning to be done!!  Our little CFer is doing a little "spring cleaning" of his own.

I called Vicki again this morning - big surprise for me, right?  Every blog entry I have pretty much starts or ends with "I called Vicki" - lol!  But we love her so much - she's like family, especially for all she's done for us!!  I told her that Sax is sounding a little rattly - very little if any nasal discharge, just a little more rattling in his chest than normal, no fever, appetite is fairly normal (for him). 

She says everything sounds good, if he was bigger, we'd ask him to cough to try to get him to get the stuff up.  She laughed when I said "Saxy cough" and he started coughing on his own (a little game we've been playing to 'teach' him to cough - which is actually really good for him and his condition!!) 

Basically what's going on?  All winter he's been indoor in dry air.  Even with the humidifier running, the air indoors is not as moist in the winter as in the summer.  Spring is actually the best time for CFers because there is SO MUCH moisture in the air.  His nebby is supposed to help him breathe in more moisture, but we only nebby 20 minutes 2-4 times per day.  Now that the snow has been melting, the moisture content of the air is increasing, and he's breathing in more of that moisture, plus he's been running and playing a lot more outside.  The mucus in his lungs has been dry because of the dry air, but now the mucus is starting to absorb the moisture too.  This is causing it to loosen up, which is causing the rattling.  If we get him to intentionally cough, he may be able to knock it loose and get it out!  I asked, "So basically, for him, it's spring cleaning?"  She said she never thought of it that way, but yeah, that's probably the best way to describe it!  The spring air is cleaning him out.

So what's the plan?  Sax is going to get 3 CPT (vest) treatments per day now until he stops rattling.  Vicki doesn't work Thursdays, so if anything changes I'm supposed to call her Friday.  She was also leaving a note with Dr P.  Giving him an extra albuterol treatment is optional - depends on if HE wants it too, or if he seems to need it.  Otherwise, we're back to Rochester next Wednesday for his next checkup.

I'm going to leave you with a few pictures from Friday night - bowling with the kids!! 

Baby Thumpy!!

I was trying to get my little man into his vest and he handed me Raine's baby - "No Mommy!! Baby thumpy!! Baby nebby!!"  He went so far as to try to get out of his vest and put it on the baby.... Oh, I love this little man. He keeps me on my toes.  He's decided now, when he does his morning treatments, he doesn't want to sit on my lap after he's done with the nebby - which is good that he's moving around and exerting his lungs more.

Saxy with his bear and Raine's baby.

That bug he had took a little while to let go.  He was getting better, then got worse, coughing, fever, not eating, lethargic.  We had to make another trip up to see the PA, and made a call to Vicki to keep her posted since we had no idea of what was going on.  Thankfully we didn't have to go back to Mayo!!  They figured it was just a virus that was hanging on a little longer than normal.  He got his appetite back for a few days.  Now it's been 3 days since he's eaten a good meal - it was lunchtime on Monday when he ate a full meal.  It's frustrating, especially since it's so important for him to put on the weight!!!!  I'm hoping that it's a 'stage' and that he'll outgrow it soon!!!!

We have 2 weeks until Sax's next appt in Rochester.  And 2 weeks until Daddy gets his CF tattoo :-)  He's really excited about it - wanted to be sure he gets it before the Walk on May 7th!  I'm not even positive what it's going to be - don't know if he does either - just know he has the time scheduled. Mommy already has a Saxy/CF tattoo....

When it was fresh - purple rose for CF, 4 leaf clover for my little Irish man.

Our fundraiser is all planned - just need to get the posters made now and start hanging them up :-)  We are serving Sloppy Joes at the Aragon Dart Tournament 11am-5pm on Saturday March 5th.  The price is $3.50 for a sandwich, potato salad, and chips and $2.00 for each additional sandwich.  All proceeds benefit the Cystic Fibrosis Foundation. We are still looking for volunteers for 3 hour shifts - 11-2 or 2-5.  Please contact me if you would like to help serve or hang posters!!

The Great Strides walk is coming up on May 7th at 9am.  We walk rain or shine.  We have Strides for Sax team t-shirts available for anyone who is interested in walking.  You can register by visiting our Great Strides website.