Cincinnati

Well.  The last 2 weeks have been a bit of whirlwind.  Literally and figuratively.  Last Wednesday, Coco and Papa's house was destroyed in the tornados hitting North Alabama.  They are very lucky to have only lost their house.  Some of their neighbors didn't survive and I have never been so glad to hug my parents' necks in my life as I was the day after the storms.

We were scheduled to be in Cincinnati to see the AeroDigestive team on May 2nd.  At first, after the tornados, we were going to cancel the appointments.  And then Papa and Coco's insurance was really awesome and they were taken care of and mom may have guilted me in to making sure her preshus Nate was taken care of.  So, we're here.  Seeing specialists, having procedures, hanging out in the hotel.

Nate.  That kid is just full of surprises.  2 weeks ago, his pulmonologist in Birmingham wanted him to have a sleep study there so she would have a baseline of information to talk with the Cincinnati specialists about.   They started the night with Nate off his vent and he did great.  And kept doing great.  He did so great, he stayed off the vent all night.  And they even tried him capped, which is putting a plastic cap on the trach, rendering it useless, making him breathe completely through his nose and mouth.  And he's been capped for 2 weeks.  This is huge.  He hasn't used the trach to breathe at all for the last 2 weeks!  He's been doing so well with it.  Which means he's been a normal nose breather.  For 2 weeks.

So, when we got up here on Sunday night, he was at a place where the team could jump in and reiterate everything his Birmingham doctors have been saying, which is Nate is ready to get rid of the trach.  Not right now, but he will be able to live a life of quality without the trach in the near future.

The plan:  we let Nate get 2-3 colds, good upper respiratory infections, and get through them while being capped.  This will be harder for me than it will be for him.  I'm a germaphobe, I don't do sick well.  The pulm up here said I need to get a glass cover for the trach that says "Break only in case of emergencies". I laughed but inside I was cringing.  How do I let him get sick with out using the trach?!  

Nate will also need to have his tonsils and adenoids removed before the trach is removed.  So we're looking at next Spring for decannulation (trach removal).  Ben and I are both fine with a slow path.  The worst thing in the world would be to get rid of the trach now because he's doing so well, only to have to retrach him this winter when he gets a cold and can't handle it for whatever reason.  The plan we have is a good plan.  A solid, steady plan.  We like solid and steady.

To recap:  Nate's a rockstar.  We're working towards getting rid of the trach next Spring.  Everyone is happy.

Toser's Birthday Post

Toser, you turned 6(!!??) last week!  Wow.  Where in the world is my big-headed, fat little baby?  Where in the world did this skinny boy come from?  You are full of energy and life.   Last week, I said you were high on self esteem and you were.  Boy oh boy, you were.

You've had an awesome last few weeks.  You were chosen by your teacher to be Student of the Month for your class.  A boy and a girl from each class are chosen and you get the honor of sitting at a special table for lunch.  You love that you were chosen.  Sometimes you get to choose a friend to sit with you at lunch and you think very hard about who you will pick.  The day you went home with your friend, B, you chose him.  I think that act says a lot about how you think and how conscientious you are, even though I don't always recognize that.  

Daddy took you to pick out a new bike.  You LOVED being included.  You picked out an orange one and it's so big compared to your old one.  Embarrassingly big because we waited too long to get you a new one.  You chose to get one without training wheels and you'll get the hang of riding it soon.  I think this is killing me the most about you growing up.  You're about to be old enough to ride around the neighborhood by yourself and I'm not ready for you to.  I still see you as the little baby who would bang on the glass door at the cat.

You love to play with your little brother.  I love to listen to you two play.  You tell him what to say in your games/role play and he follows right along.  He looks up to you so much and he couldn't have a better role model.  You have a good balance of sweet and booger.  I yell at the booger part too much and I don't validate the sweet enough.  You still give me kisses at the end of the day and tell me you'll see me in the morning. 

You are so confident in your self.  One day, I was trying to convince you to unbutton the top button of your polo shirt and you matter-of-factly stated, "I like it this way."  You make no apologies for who you are and it's one of my greatest fears I will somehow smother that in trying to help you fit in the world.  You're a nut and your sense of humor will take you very far in life.  

My little Boser Toser.  I love you so much.  I hope year 6 is as good for you as year 5 was.  Happy Birthday, to my Von Hoobie Doobie!  

Tater's Birthday Post

Hi!  I suck.  Tater's birthday was March 31st.  He turned 4.  We had fanfare and celebrations at home but I forgot to blog!  oops.  :/

Happy Birthday Tater!  You're 4.  You love being older.  Last week at therapy, you kept holding up 4 fingers to anyone who looked at you.  You got big-boy toys and a LEGO sticker book you've almost finished on your own.  You cannot stand that I still call you my baby.  Sorry, you'll always be my baby.  When you're 25, you'll be my baby.  That's just how it is.

You are obsessed with Dinosaur Train and your Daddy.  I feel victorious on the nights you ask me to put you to bed because you obviously prefer Daddy to me.  You get so excited when he gets home from work and will snuggle all day long with him.  You still think Toser hung the moon and stars and even though you fight like the brothers you are, you play so well together.  You follow him around and do most anything he tells you to do.  Until you don't and then good luck to the person trying to convince you to do something after that.  You are a stubborn booger when you don't want to do something.  And your leg often hurts when it's time to pick up toys or clean the table.  Pitiful Medical Baby is in full force when you need it.  When you're really down or sick, you want to call Coco because she gives the best pity love over the phone.

Recently, you were really sick for 2 weeks.  Like take years off my life sick.  I had to take you to the ER twice during those 2 weeks and you were such a trooper.  You don't like being at the hospital, but you deal.  And you never punish me for having to take you.  You're old enough to know these people are trying to help you and that you will feel better after taking medicine.  You hate breathing treatments.  The nebulizer has turned into ALL THAT IS EVIL.  I don't know why.  I think because you have to be tied down for 15 minutes?

One Saturday when you were sick, you had to be on your vent.  I set you up on the couch and eventually, there were no more kid shows on the TV.  You watched college basketball all day long.  Daddy was out of town and when I told him you watched at least 5 games, I swear I heard a tear drop.  He is very proud you got his love of all things sport.  If there are a group or men or women competing over some inanimate object, you and he will drop everything to watch.  You will always have this bond with your Daddy and it will take you through many rough times.

You love your nurse, Pat.  She is your grandmother/servant/play pal.  I often find the 2 of you snuggled in a chair.  She eats it up and she loves you just as much as you love her.  You're nutty together.  Actually, you're just a nut in general.  Your teacher gave you a birthday hat at school and you wore it to the restaurant we went to that night.  You didn't notice the attention you got wearing it because you just take that attention for granted.  You're one of the funniest guys I know.

You are full of love.  You MUST give whoever is leaving a hug and a kiss and stand at the door for 'one honk, one wave'.  You get very upset if you miss 'one honk, one wave'.  You give the best squeeze hugs and have the most kissable cheeks.  They're so soft and wonderful and I love to snuggle with you and kiss you until you get mad.  I love it.

And I love you.  You are an awesome 4 year-old who is still teaching me so much about patience and strength.  You are sitting here in your PJs, watching Caillou, one of the most annoying shows ever put on children's television, and you are so happy.  I learn so much about the little things just by being your Mommy.  You are one of the 3 best things ever to happen to me.  Happy Happy Birthday.

Japan

Update:  Chika is flying to the States tomorrow (Friday) with the kids.  She is having to leave her parents and her grandmother behind.  Please send good vibes to her as she has an 18-hour flight alone with 2 kids (ages 3 and 5) and she's scared to leave her family.  I'm so glad they'll be safe but I know she's devastated having to leave.

My heart is broken for Japan.  Ben's as-good-as-a-brother friend, Greg, lives south of Tokyo with his wife, Chika, and their 2 kids, Kai and Kei.  Thank goodness they're okay.  Greg is in the States on business and Chika went through the fear of the initial quake/tsunami and is going through the aftermath of the quake (the aftershocks, the rolling blackouts) on her own with 2 small kids.  Her parents are close by and they've been able to stay with them.  I can not imagine having to answer questions about earthquakes and tsunamis, dealing with their fear, trying to keep it together, all the while grieving for all her country has lost.

A woman, Mairead, who belongs to the trach forum that has been my life-line, was close to the epicenter of the quake and close to one of the nuclear plants that is unstable.  Mairead's oldest child, Maleek, has a trach and needs to be suctioned often in order to breathe.  She and her family relocated to Tokyo when it was no longer safe for them to stay in their home due to power losses.  The suction machine has a battery but it doesn't hold a long charge and they have to either plug the suction machine to a power outlet or into their car in order to charge it.  In an area with energy shortages for both electricity and fuel, they were very frightened at the prospect of caring for Maleek.  They have decided it is best for them to relocate to Mairead's home in Toronto.  They are currently working with the Canadian Embassy to get a visa for her husband, who is Ugandan, and a passport for their younger, 6 month-old son.  After they get the paperwork, they still have to find a way to transport Maleek in a safe way, making sure they are able to secure electricity to charge the suction and oxygen in case he needs it for a flight.  These are huge hurdles in good times and these people are working on little sleep, little food, trying to make sure their son is okay.  I've been filling my Facebook wall with links to articles about Mairead and Maleek.  I can imagine only too well the panic and frustration they're feeling.

We often take for granted that other people are taking care of those in need.  Japan is a rich country and it can be argued they don't need our help, financial or otherwise.  I say that's baloney and the decent human thing to do is to help in ANY way you can.  Ways to help:

Japanese Red Cross

Mercy Corps

Doctors Without Borders

Things I Know to Be True

Wow.  I honestly thought I would be the only one who would cry on that last post.  Toser is a pretty special boy and it's nice to know other people think so as well.  

Because there is no segue to this, let's just get on with it...

Things I know to be true:
1.  You get much more respect as the parent of a medically-challenged kid when you look nice.  This is the reason I have always worn make-up to doctors' appointments, no matter how routine.  This is the reason I have always taken a few extra seconds to put on small earrings and nicer clothes when I have taken Tater to the ER in the middle of the night.   I've had a lot of time to observe and to put this theory to practice and it's silly and it's prejudiced but it's true.  Doctors, nurses, receptionists, pharmacists-they all put more effort towards the parents who look "nicer."

2. My boys will often figure something out only after they've yelled, "Mommy!!" first.  They don't need/want/require my help but they must yell for me before the answer or solution will come to them.

3. My husband is awesome.

4. I am addicted to Amazon Prime.  It's a 2-day shipping program I got for free for signing up for something and now there is no way to imagine a life without free, 2-day shipping.  I just have to set a reminder for 2 days before someone's birthday/gift-giving occasion, go to Amazon, pick something out, enter their address and voila!  They get a present ON THEIR BIRTHDAY, I didn't use gas or mental energy in going to the store and post office and everyone is shining-happy-people-holding-hands.

5.  I often shut down when I am overwhelmed.  I don't like to converse on the phone, I avoid emails, I don't want to see anyone.  I don't know how to come out of it gracefully so when I feel better and more in control, I just reappear in life and pretend nothing happened.  It's very exhausting for my family and friends but I hope they understand it's nothing personal.  You do understand it's nothing personal, right?

6.  My husband is gullible.  I get Mr. A involved in a TV show that comes on at 9pm, we talk about how awesome it is we have "a show" together.  2 weeks later, I can't stay up until 10 any more and I'm going to sleep while he's stuck watching a show he didn't want to watch in the first place but he is now invested in the plot.  It happens way more often than it should and I guess I should feel kinda bad about it, but I needs me some beauty sleep, y'all.  The only show in recent memory this did not work on was LOST and that's just his loss.  Because I LURVED LOST.   The current show he's watching without me is Castle although, I think he's more invested in Beckett than he is in the plot.

Excuse the Blatant Bragging

Toser, Toser, Toser.  What we gonna do with you?  You're 5-going-on-6 in every sense.  You have much better control on your emotions and we don't have the swinging from extreme happiness to extreme devastation every day now.  (Your brother has taken on that role so we haven't yet had the chance to reflect on that with fondness.)  You're a fabulous big brother and the love you have for Tater is amazing.  He loves when you read to him and I often find you two snuggled up on the couch reading a phonics reader.  You also have taken on your role of little brother tormentor with gusto and can goad him like none other.  You're a funny little guy and your smile literally lights up rooms.  You have a twisted sense of humor and laugh hard at shows like WipeOut and America's Funniest Videos.  In fact, you love WipeOut so much, your teacher had to prod you to write about something else in your journal.  You got mad when I laughed a bit too hard at that one so that sensitive streak is still in you.  You wrote about the launch of Space Shuttle Discovery the next day.

You are a smart little guy and you often ask me questions I really have a hard time answering.  Sometimes you take my suggestion to ask Daddy when he gets home but a lot of times you won't let me off the hook.  Google is my friend in looking up what kind of ship recovers the Solid Rocket Boosters after a shuttle launch and your questions about planets.  Speaking of, you know that a Googol is a 1 followed by 100 zeros.  You are obsessed with the President flash cards I got in the dollar bin and you quiz me:  Mommy, who was the 22nd President? (I have no clue)

You have completed all of the components of Kindergarten math and are doing extra math work during nap time at school.  You understand math concepts I have a hard time explaining to you.  You got both of your grandfathers' genes in that regard and I know I will always be amazed at how you just "know" math instead of having to figure it out like I do.  Our school system doesn't have a gifted program for Kindergarteners but you and 4 of your friends attend "Enrichment" classes with the Gifted Program teacher.  The first day you brought home one of your enrichment worksheets, Daddy and I sat there with our mouths open because we honestly had a hard time figuring out the logic relationships you were working on.  You're a smart cookie but you aren't cocky about it.

I love you, Toser.  I love you so much my heart hurts.  I have been really worried lately.  I worry you're going to fall through the cracks because we get wrapped up in your brother's issues.  It's a silly worry, really, because you are so loving and strong.  Daddy and I say you're the kid who won't go away for college but stay at home because you want to be close to your brother.  You understand, on a level most kids would never get, your brother does need a bit more attention and you do not begrudge him that.  You make me and Daddy pay for it sometimes but you would never dream of punishing him for it.  Your Kindergarten teacher calls you a blessing.  You are.  You are one of my greatest blessings.

Negative

So, Teh Heavy(tm):

Nate recently saw a new neurologist.  I really liked the doctor; I think he's a smart cookie and he spent a lot of time with Nate before he suggested a new test.  We got results from the latest testing on Friday:  Nate tested negative for Ullrich Congenital Muscular Dystrophy.  Of course I'm relieved and happy but...  I didn't want to test for this.  I didn't want to go through this roller coaster again.  I'm so tired of doctors knowing what's wrong.  We go through the what-ifs, the devastation of thinking this could be it, and it's all for naught.  No, that's wrong, it's not all for naught.  We couldn't deal if we didn't prepare ourselves but having to know Nate's issues could be very serious then finding out that it's not this particular serious is so damn exhausting.  It is something.  Nate wouldn't have these issues if it weren't SOMETHING.  Just because he's doing so well, we can get to a place of not thinking about the SOMETHING.  But the SOMETHING is always there and the testing, negative results or no, reiterates that.

Friday, my poor mom is the one who got the news.  Our phones were down because a construction crew cut a fiber optic line that serviced both landlines and cell towers in our area so they called the emergency contact: Coco.  It was kind of a mess-my mom KNEW and couldn't get a hold of us.  She finally got in touch with Mr. A who then came home from work to tell me.  He was all jittery and I kept asking him if he was okay.  He said he was fine but I was reacting strangely.  And I was.  I had no emotion.  None.  I've cried a bit since then- happy tears, frustrated tears.  But, as I asked my mom, how am I supposed to  process this?  If anyone could tell me how to process all of this, I am taking suggestions.

It's not so much denial as it is survival.  I cried for the entire week after the neuro appointment.  All of my emotion for this was used up then.  I have nothing left to deal with this one so I'm moving on.  I did tell Mr. A that it sucks the world won't stop spinning so that we can deal.  It hasn't stopped so we're spinning along with it.

Mr.A gets nauseous on spin rides and I'm prone to getting colds when I'm stressed (seriously, I've been sick since New Year's and now have lost my voice completely).  We would very much like to get off the ride but we can't so we're dealing with yet another new normal.  Somehow, we'll do it while loving each other and loving our kids.  We'll keep being happy, spinning around the negatives.

3 years...

3 years ago yesterday, Tater got the trach.  Wow.  The trach and I have a love/hate relationship for all the obvious reasons.

Love:  it saved Tater's life, it's actually not as hard to take care of as it looks, it has allowed us to avoid numerous hospital stays, we've met so many wonderful people because of it;

Hate:  it can be a pain in the butt to take care of, Tater can't do a lot of normal kid things because of it, we can't leave him with just anyone and it takes a lot of planning when we do leave him, we have to deal with nursing agencies and Medicaid, we do not travel lightly and Tater's gear takes up most of the back of the van on trips.

Life with a trach is full of contradictions.  Life with a trach is easy and hard, quiet and noisy, simple and complex, full of joys and tears, fulfilling and draining.  And most of the time, life is all of those things at once.  I wouldn't change much about the last 3 years and I doubt if I could, I would change the trach.  Tater is who he is because of all he has  gone through.  And I definitely would not change a thing about this sweet booger:

This one isn't about the boys

Yeah.  We're here.  We've been dealing with Teh Heavy(tm) the last couple of weeks and my blogging has been only one of the several victims.  It's been so bad that even cooking, something I love to do, has filled me with dread.  Teh Heavy(tm) is a bunch of stuff that won't be resolved any time soon and it's not anything to blog about until we get some test results but let's just say I am tired of the damn roller coaster.  T-I-R-E-D.  Yesterday was the first day in a while I have not succumbed to the siren song of my bed and Investigation Discovery on TV while the boys were at school.  Something about murder and mayhem when your life is in disarray is comforting.   Yesterday, I even made a full-on meal.  I fed the boys before Mr. A got home so we could have a very much needed candlelit dinner.  It doesn't help that 25 of the last 30 days have been gray.  I need me some sunshine!

Last night while I was going to sleep, I thought, "I really just need to blog SOMETHING so I can get back in the game."  This is what I thought about:

Mr. A and I had been dating about 6 months when I needed to have some minor oral surgery.  They had to put me under so I couldn't drive home and Mr. A very kindly took off work to stay with me and get me home safely.  Which, looking back, he must have been more into me than I thought because that was one of the busiest times at his work and he was working something like 80 hour weeks.  hmm?  Anyway, I wake up pretty fast from anesthesia and am usually fairly alert afterwards (unlike some people, ahem, Mr. A).  I was ready to go soon after the surgery was over so the nurse indicated she was going to tell Mr. A to get the car ready.  She left me in a wheel chair in the hall and said, "Wait here while I go get your husband."  There is nothing more panic inducing than a nurse calling your slow-to-commit boyfriend of six months your husband.  I tried to jump out of the chair and was shouting (as much as I could), "HE'S NOT MY HUSBAND!" but it sounded more like "HEBOTBYHUBAB!" because my mouth was packed with gauze.   I don't know what she called him when she went out to the waiting room but apparently it didn't scare him off because here we are 12 years later.  Mr. A probably would have laughed it off but at the time, in my semi-fogged state, it seemed like the WORST THING IN THE WORLD.  That's pretty much the only thing I remember about that day because I took narcotics afterwards.

The Shining

Our city continues to be at a stand still because of snow/ice, school has been cancelled all week but miraculously my husband can get to work. The nurse is driving me bonkers. Tater is sick. Both boys are stir crazy. I have given myself a timeout in my room for 3 days so I don't start hearing REDRUM and snap anyone's head off. That is all.

SNOWPOCALYPSE!!!! 2011!!!!

Today we had our second huge snow of the season!  We woke up Christmas morning to 6 inches and woke up this morning to 8 inches.  It's cahrazy.  Nate started running  a fever last night and didn't get to spend a lot of time out today because he feels puny but Toser has been out for 3 hours straight.  He and Mr. A snagged a sled from some friends and went sledding down a huge hill.  Toser apparently had a blast but didn't love hike back up.  It's a steep hill I walk with my friends sometimes and it's a definite killer to walk up.   They're frozen at this point so I'm off to make a hot dinner for them.  Here are some pics:  

Confession

Okay, listen.  I tend to err on the side of DRAMATIC.  If something is only so-so, I can make it SO-SO-SO.  It's a gift that makes life very exciting.

So yesterday.  Tater and I left for Birmingham, it was raining, my stomach was in knots.  I really wanted to call and cancel.  But we went- Tater all snuggled in his seat watching Mater's Tall Tales, laughing out loud; me calling Mr. A every 5 minutes so I could complain about the rain and not wanting to go.  We get to clinic, which is actually not that bad because patients are seen in the sleep clinic rooms which are sooped up hospital rooms with TVs.  We see nutrition, respiratory, etc., individually.  They all meet to talk about Tater then come back to talk to us together.  I had told our care plan nurse about going to Cincinnati but no one was bringing it up in the summary talk.  They were telling me about their plan for the next few months and I started stuttering about how we want to take Tater to Cincinnati because of the ENT team and uh, uh, uh....

Tater's pulmonologist said she thinks going to Cincinnati is a good idea and they only want us to have all the information we can have before we go up there.  huh?  I could swear these people were dragging their feet about this.  They made an ENT appointment without telling me, our vent nurse looked taken aback every time I said Cincinnati, they punked us with a new GI doctor yesterday; all signs were pointing to STAY IN BIRMINGHAM.  But apparently, we're going to Cincinnati with full support and lots of testing and information.

This is good.  I'm grateful they are backing me up because it could make life a bit uncomfortable if they didn't want us to go.  But I feel confused.  Like I was being so dramatic about something so inconsequential.  I was so torn up about this and they're all, "Yes, go to Cincinnati!"

Y'all, I'm apparently a nut.  Tater's medical issues have made me certifiable.  I just knew they didn't want us to go.  Maybe they read the blog?!  I guess the lesson here is to take everything I say and get worked up about with a grain of salt because chances are, it's all going to be bunk.  The important thing is, we're going to Cincinnati!  No bridges have been burned!  Tater getting the care he needs is all that matters here and my sanity is just a side note.  Until it's not.  Please be nice to me when I finally do crack.  And bring raw chocolate.

P.S.  Here's the link to the Aerodigestive Team we'll be seeing in Cincinnati: http://www.cincinnatichildrens.org/svc/alpha/a/aerodigestive/default.htm  We hope to go in April over Spring Break.

Politics of Medical Care

Tater has vent clinic today and I'm going to finally get to explain why I want to take him to Cincinnati. His vent team in Birmingham has been hesitant for us to take him to Cinici. I totally understand why and where they are coming from. Tater will still need to see them and they're not going to be the primary caregivers. They're used to giving orders, not taking them. I understand.


The thing is, I'm exhausted. This will be Tater's third visit to Birmingham since Thanksgiving and we have one more at the end of the month. It's an hour and a half drive down there and back. Parking is spotty and we usually have to wait long times to see the doctors. We have the drive down pat and Tater doesn't mind going but I have to find someone to pick Toser up from school, I'm always rushing to get home, Tater is soooo pleasant the day after a Birmingham visit (not). I dread visits down there.


The Children's hospital in Birmingham is associated with a teaching hospital. We see top notch doctors and I've never been disappointed with Tater's care. But with the way the specialty clinics (urology, vent/pulmonology, ENT, etc) are set up, I'm expected to be the information sharer. Yes, they all have access to his chart. Yes, all of the specialists know each other and talk with each other. But they never look at his chart and they don't talk, really, and I feel like I'm drowning in trying to get the doctors all on the same page.


After Thanksgiving, Tater had an appointment with ENT in Birmingham. I didn't make this appointment, his pulmonologist did. She wanted Tater to see this particular ENT so we went. I was assuming the pulmonologist had at least talked with the ENT to let him know what the deal is. No kidding, the ENT walked in and asked, "Why are you here?" Not in a 'hi, how are you' way, but in an 'I have no clue why you are here, seriously why are you here' way. When I explained why Tater's pulmonologist wanted Tater there, the ENT said, "Well, I'm not the guy who can help you."  I appreciate the guy's honesty, but wow. It makes me want to cry just thinking about it. It was such a wasted trip and I felt so stupid, even though I was only doing what I was told to do.


I know there will be issues in Cincinnati. No place is perfect, there will be kinks and everyone knows I'm going to get fired up about SOMETHING. But in Cincinnati, we see 3 specialists (pulmonology, ENT and GI) who honestly, truly share information because they're all working together. No one will be looking to me for the results of a test because they will already know! Because they actually shared information! And look at Tater's issues as a whole and not just as broken up bits. Such a novel concept.


So, we're about to leave for Birmingham, and I'm hoping I don't cry when I'm pleading my case. I'm desperately trying not to burn bridges here, and I think his vent team is great (well, except for one doctor who has a Napoleon complex). We all KNOW I'm going to cry so just wish me luck on the not burning bridges thing. K? Thx!