Epilogue of sorts

It has always kind of made me happy when an author throws in an epilogue at the end of a book.

You always wonder at the end of the story what happened to the characters?  Did they live happily ever after?  Did the guy get his dream job?  Did the couple stay together?

Really it's all in the author's head, but still that sense of some closure is nice I guess.

So, here we are with an epilogue of sorts.  I get emails every few days from the visitor counter on the site, so I know people do occasionally stop by.  I figured they would like to know how things have turned out for the characters. Well - at least to this point.

After Zach's passing we decided to move to a new home.  From a purely financial standpoint it wasn't smart.  Our house was actually worth less than when we bought it in 1995. (Yea - market crash !!)

Still though, it wasn't all about the money.  Too many memories there.

We are currently living in Cooper City, and really loving it.  We're in a nice neighborhood, close to all of the stores and places we were always at anyway.  It's a little more of a commute to work, but much less driving otherwise.

On the plus side, I haven't seen a single drug deal, or had police helicopters flying over the house a few times a week.

As for the kids...

Josh seems to be doing well.  He is happy at Cooper City High, and for the most part his grades have been pretty good.  He's had his driving permit for a year now, and will probably be getting his full license sometime soon.  Scary thought there.

Baseball has I guess been okay.  After dealing with some elbow issues last spring, he has come back really strong.  I'm looking forward to see how the next few seasons pan out. Not sure if he will end up as a pitcher or a catcher. I guess time will tell.

Josh has had a couple of girlfriends over the last year.  They are really sweet girls - and neither has a shaved head, a safety pin through her nose, or an apparent substance abuse issue - so I guess everything is good on that front.

Brandon is well - Brandon.  He's a pain in the butt at times, but I think that runs in the family.  He's in his school's gifted program, and is bringing home good grades.  As I have always said, Josh is really smart, and really should have been in the gifted program himself -but Brandon is in a whole other world.  If he chooses to apply himself, he will go on to do some really big things academically.

Brandon is playing baseball as well, and just finished his first season of "kid pitch".  He actually did really well.  He's a better hitter than Josh was at that age - but not as good defensively.  I don't know if he will end up as successful as Josh, but I guess it is possible.

I think for the most part the kids have handled Zach's passing fairly well.  Josh was old enough to know Zach's fate was inevitable, so he was prepared I guess. It was a little harder on Brandon, but except for the occasional sad days, I think he is doing okay.

The wife and I are doing well I guess.  The last year has brought a lot of changes for us, but as always we just take things one day at a time.

Work for me is the same - aggravating, undercompensating, and unfulfilling.  Other than that though it is great!!!

Janine is in her third year as an assistant principal.  From what everyone tells me, she is really good at it.  I'm hoping before long she will get a shot as a principal.  Either that or she gets the job as superintendent. (Okay - I can dream.)

As for some of supporting cast...

Nurse Mike has relocated to Arizona, and is still nursing.  We still chat with him occasionally, and he is still as sarcastic as ever.

Nurse Serge is still a friend of the family.  He comes by when his schedule permits, and texts frequently.

Anyway I guess in summation that the story really isn't complete on the Townsley family.  There are still many chapters to be written.  I'm sure at some point I will write a sequel to the epilogue.

For now though readers, just know that we are okay and that life goes on.

And of course don't forget that we are never promised tomorrow.  

Semi-mindless ramblings

Well, it's December 2013 and it has been a while since I've posted.  I guess that's pretty obvious.

I've asked myself why, and never really had a good answer.  Sure I took on a new position at work, and Josh needed to be driven all over for baseball... but really I think the truth is that despite the jovial spin I put on my writing, it wasn't enjoyable.

Zach had come to a point where I realized that his time was not long on this world.  Despite our best efforts, I knew that there wasn't much more we could do. Not writing about it allowed me to avoid thinking about it I guess.

Zach passed away on November 4th in his bed surrounded by his family.  I'd rather not revisit the event save to say that it was peaceful.

So I find myself in a strange place.  How is a parent supposed to handle the passing of one of their children?  No matter how much you think about it, you are never really prepared.  There isn't really a part of the brain designed to deal with this topic.

So, like we have done since Zach's diagnosis - we just take things day by day.  People still ask how we are doing and for the most part I just say we are doing okay.  Most of the time it's even the truth.

It obvious that many people really don't know what to day.  We understand.  I wouldn't know what to say either.  Although, no matter how many people say it, you are never going to convince us that he is in a "better place".

Those who loved him most are still here, so how could he possibly be in a better place?

Anyway, I've depressed myself enough for one evening.  Perhaps I will return when the mood hits me.

Until then remember, we are never promised tomorrow.

Happy B-Day

It's May 31st, 2011 - Zach's 11th birthday.

We cheated a little and celebrated early - this past Saturday at the Saveology Iceplex . (Yes, I had to look up what saveology is.)

We had a great turnout of friends and family. The Iceplex reserved a rink and a block of party rooms especially for us. Zach got a chance to go out on the ice for a few laps, and unlike most party guests - didn't fall a single time. Next year he has requested chains for the tires on his stroller so he will have a little better traction in the turns.

The wife would also like you all to know that she also didn't fall, joining me in this accomplishment. Of course she actually went out on the ice, so perhaps she deserves a little more credit.

In other news, Zach got new wheels today. Unlike last time we didn't have to fight for a year to get him a new wheelchair.

I'm a little slammed at work, so gotta cut it short.

Couldn't happen to a nicer guy

Osama bin Laden

March 10, 1957-May 2, 2011

It's about damn time.

Now for another public service announcement

I have officially seen the worst children's toy ever created.

Crayola color bubbles.

Hands down - not even close.

I'm not sure what was wrong with the old fashioned soap bubbles we used to play with as kids. You dip the wand in the solution, blow - and voila bubbles appeared. For some reason the fact that these bubbles were clear bothered the scientists at Crayola. They set upon a years long quest to created "colored" bubbles.

Well, I can say they did create "bubbles" and they are "colored".

You know what else they are?

A HUGE GODDAMNED MESS TO CLEAN UP!

When the "bubbles" burst, you know where that "color" ends up? ALL OVER EVERYTHING, THAT'S WHERE IT ENDS UP!!. Hands, clothes, floor, you name it - covered in what is basically food coloring. Guess what - despite the big "WASHABLE" statement on the bottle, this stuff stains about 90 percent of the surfaces known to man. Yes it will wash off of your skin but anything else is a pure crapshoot.

I'm not what one would call a neat freak. If the house isn't perfect, I don't really care - I have other things to worry about. House neatness is way down on my "crap have to worry about" list. This stuff though is enough to even push me over the edge.

Apparently the fine print on the bottle says you shouldn't play with this stuff on concrete (among many other places). I confess to having not read that because hell - where are you supposed to play with "washable" bubbles? Apparently there is a small list of places where you can safely play with the "washable" bubbles: A desert, while floating in the middle of the ocean, and the home of whatever Crayola executive thought this stuff was a good idea. Anywhere else is pretty much off limits.

This morning Josh attempted to wash off our walkway that was stained by the "washable" bubbles. He used a pressure cleaner with detergent.

Guess what? Didn't remove one bit of the staining.

Great. Now our walkway looks like Gargamel finally got his revenge.

I will say this... If you have to send your kids to a birthday party at the real "snooty" parent's house, this stuff is the perfect gift. Much better than a drum set or a baby cobra.

It's that time again...

It's the time of year when our household learns to successfully juggle schedules, tend to endless loads of sweaty laundry, and discover just how many drive through restaurants exist in the vicinity of Flamingo Park. Yes, it's baseball season.

Games kicked off last Wednesday with a strong victory. Our team was led by Josh who had a great performance on the mound, and is now convinced he is the second coming of Nolan Ryan. I guess time will tell on that...

Our second game, played this past Saturday was preceded by the field being renamed in the honor of Roger Castillo. (Story on WPLG can be found here ) It was an emotional ceremony attended by all of our park's players, city officials, family members, and Roger's fellow officers. A monument honoring Roger's memory has been placed at the field where we play many of our games. The storybook ending to the day would be that we won the game. Unfortunately we ended up losing a tough game, although in the context of the day - that's really of little significance.

As for our crew... I guess all is as well as can be expected.

Zach is holding steady for the most part. His resting heart rate is down below 40 at times. We aren't sure if it might be due to a small increase in medications. We're going to go back to the old dosage to see if it makes a difference. Of course the dosage was upped to begin with because Zach seemed to be in pain at times. So I'm not really sure there is a good option for us to take.

Brandon is doing well. He is looking forward to the fall when he will get to play T-Ball. I'm not sure that I am looking forward to coaching T-Ball... The kids are fine to work with, but the parents can be a little rough at times. It usually takes them a couple of seasons to realize that no matter what their child does on the T-Ball field it doesn't matter in the grand scheme of things. Of course there are some who never get it - I'm sure you know what THOSE parents are like.

Let's see - that leaves the Wife and I... Well, as far as I can remember there really isn't much to report on that front. Apparently we are boring. I blame this on the kids. I remember being cool. (Those of you that knew us when we were younger can stop laughing now. Parachute pants were cool. I don't care what you think.)

Never promised tomorrow

We're never promised tomorrow. Sometimes it's just something to say to those faced with adversity.

Today though it became reality for 2 Miami-Dade police officers. For officers Roger Castillo and Amanda Haworth, tomorrow will never come.

They were killed in the line of duty today while trying to arrest a wanted fugitive.

Roger is the father of 3 boys, one of whom played on my baseball team last season.

I'm totally in shock right now.

A flair for the dramatic

Not a happy post...

Zach has had some major issues this past week. It all started out with a routine visit to his pulmonologist on Tuesday. All seemed fine at that appointment, but because Zach hadn't had a brochoscope exam done in a while, the doctor wanted one done.

So, rather than waiting to do one at the hospital, Janine was able to get one scheduled at the office of Zach's ENT. During that exam, it was found that Zach had some granuloma tissue building up internally at the bottom of his trach tube. Basically scar-type tissue building up from the trach tube rubbing the inside of his trachea. Some ways to try to address the issue were discussed, and a follow up appointment was scheduled for a couple of weeks away to see if there was any change in the situation.

About 4:30 the next morning Zach's oxygen saturation monitor started sounding its alarm. When Janine and I went into Zach's room, the monitor was picking up no reading at all for Zach's oxygen level, and a minimal pulse. He wasn't breathing at all.

I began giving him breaths with the ambu-bag, and Janine suctioned his airway in case there was a mucous plug blocking it. Zach's pulse picked up a little, and his oxygen level came up into the 70's-80's. (For the uninformed - this is NOT a good sign when 100% oxygen is being forced into your lungs.)

Every 30 seconds or so I would check to see if Zach would start breathing on his own, but after a few minutes of no effort, we called rescue.

By the time they arrived, Zach was beginning to take a few week breaths. We were transported to Joe Dimaggio Children's Hospital via ambulance. Once we got to the ER, Zach was breathing on his own again.

Doctors suspected an issue with his airway, so Zach was placed on a ventilator to provide pressure to keep his airway open. This went okay for a while, then Zach stopped breathing again and had to be given breaths via an ambu-bag. After a few minutes, he started breathing and was placed on the ventilator again, this time with it actually breathing for him. (I have philosophical issues with him being on the vent in this manner, but more on that later.)

After about 10 hours in the ER, a bed was finally available in the ICU. We made a quick stop for Zach to have a MRI, and then up to the 4th floor we went. It was about 5 or so when we got up there.

Zach's ENT met us there and did another scope of his airway. In addition to the granuloma tissue, he was concerned with increased weakness in the walls of the trachea below the trach tube. (Your trachea should be rigid. Zach's is floppy, which can block off the airway. This is the reason he has a trach. The condition is called tracheomalacia if you want to look it up.)

Zach already has an extended trach tube. There isn't much more room for a longer one, so that really isn't a long term treatment option. Since we are not willing to subject him to further surgeries, the only real option at this time is to keep his airway open using air pressure provided by a ventilator.

Janine and I have decided to go ahead with this course of treatment as long as Zach is breathing on his own. We aren't willing to use the ventilator to keep him breathing.

It was a very difficult decision, but given all he has been through, and how it has affected the quality of his life we have decided the choice to remain in this world should be Zach's to make. As long as he is trying to breathe on his own, we will support his efforts, but we will not force him to breathe.

Given his physical and neurological condition, his doctors have agreed with our decision. We have signed a DNR order for Zach. He has been sent home under hospice care.

On a good note, Zach actually seems to be doing fairly well at this point. He seems comfortable and is breathing on his own. I guess that's the best we can ask for at this point.

I'll update when there is more to tell.

You can congratulate us now..

I know I'm a little lax in the posting department, but I had to drop in to post this...

As some of you know, I took the plunge and became head coach of Josh's baseball team for the fall season.

As luck would have it, I drafted a great group of kids. On top of that they could actually play pretty well. The team ended up winning the league for the regular season, went on won the playoff championship, and was selected to represent the league in a tournament involving the winners from several other local leagues.

That tournament was held this past week in Miami Lakes. After a weekend of games, and several days of weather delays (it was cold as crap down here), the championship game of the tournament was held this past Friday night.

Our team, the Marlins, faced off against the Yankees from Miramar Optimist. We entered the game shorthanded, as 3 of our players (including 2 pitchers) were unavailable for the game. Down to 8 players, we sent out a call to the league for help, and were able to secure a substitute player just a couple of hours before game time.

It was a hard fought battle that went into extra innings, and lasted over 3 hours. I sent to the mound 3 pitchers for the first 4 and a half innings, who had seen very little mound time this season. They pitched well and kept us in the game until our tired ace pitcher - who had pitched the night before came in and shut down the Yankee's bats. Channeling his inner Randy Johnson, he held on until a slap hit past a drawn in infield gave us the victory.

Congrats to the players from this season: Nick C, Josh, Mike, David, Nick 2, Kavon, Chase, Jose, Hunter, Ike, Andres, and our tourney fill-in Kenny. Thanks to Brent, and Leo, my assistants. Also, thanks to all the parents - your kids are all great.

See you next season - yes I know, that's only 19 days from now. (Let's see MLB keep up with that.)

Thanks All !

Thanks to everyone who made it out to Zach's fundraiser last night.

Harry and his staff at Big City Pizza went above and beyond to say the least. The place was beyond packed.

It was great to see so many friends turn out to support Zach. The generosity shown by them, local businesses, and people who had never even met us - but still wanted to lend a hand was amazing.

Special thanks to Dan for his great singing - everybody loved the routine. Also thanks to Brett for taking pictures of the day. (Check out his site www.bretttyler.com)

Thanks also to Mary, Josh and Brooke for running the raffle. (Although Josh did seem a bit miffed to find out it wasn't a commissioned sales position)

Thanks to Celebration Cruises for donating the cruise raffle prize.

I'm sure others will come to mind that I've forgotten - I'll give you your props in the next update...

Hey look I'm still alive!

Man I suck at this updating thing. Too much going on - too little time.

Just wanted to stop in to let everyone reading know that we are having a fundraiser for Zach on November 3rd at Big City Pizza on Sheridan and Douglas Rd.

It's an all day event with proceeds from sales going to the Zach trust account to pay for his medical expenses.

The family will be there from 4-9 PM along with some entertainment, special guests (as if we aren't special enough ourselves...), and a bevy of raffle prizes.

You can all feel free to attend - or you can just send cash of course. (I'm looking at you Bill Gates)

Oh yea - I got a new fancy cell phone to replace the dinosaur I've had for 5 years. I wouldn't have done it, but the old one died, so I didn't really have a choice.

What does this mean to you? Well, now I can send out tweets from my phone... You can follow me on Twitter - username MPS2dad. I'm not really sending out many messages yet - but I'm going to one of these days. Most likely after I return from the procrastination awards ceremony.

Like I say, I've never finished anything before, but now I

Oh how the world has changed

It's been a while, and there is really too much that has happened to remember everything, so I'll just give the highlights...

Zach spent from March 12 through April 12th in ICU. This stemmed from an ER visit because he had been in obvious pain and having his shaking incidents for about 2 days straight. The ER docs had gotten enough medications into him to get him to stop shaking, and sent him upstairs to be observed for 24 hours.

While settling in to our room, Zach developed an obstruction in his airway and had to undergo an emergency intubation. He was placed on a ventilator while the doctors tried to figure out what was going on. A bronchoscopy showed that he had tracheomalacia - an area of the trachea that was collapsing. This is emerging as an issue for older Hunter's boys.

After a couple of days he was moved to a CPAP, and then a day later allowed to breathe on his own. That night we put him back on the CPAP because he seemed to be working hard to breathe. All went well for most of the night. Then around 4 in the morning all hell broke loose. Zach's O2 saturation dropped into the low 80's, and his heart rate went up to 150 (normal for him is half that). By the time the nurse came in his O2 sats were in the 70's and dropping rapidly. The doctor came in and tried to re-intubate, but Zach's airway was in such bad shape that it took him about half an hour to get a tube in the proper spot. It wasn't a pretty sight. I was on night duty, and called Janine to hurry to the hospital, because for a while it didn't look like Zach was going to make it.

The next day Zach had surgery to reduce the size of his tongue and to clear out some excess tissue in his airway. The thought was that this would create enough space for him to be able to breathe on his own again. After a few days for the swelling to go down, he was extubated to see if he could breathe on his own. Unfortunately this did not go well as his airway collapsed almost immediately. Again, the on duty doctor had a very difficult time getting him intubated. Fortunately, the doctor who had intubated him on the first day was just coming on duty. Because she had seen his airway before, she had a better idea of how to get the breathing tube in. So, back on the vent went Zach.

This was tough because we realized that Zach couldn't maintain his airway and would need to get a tracheostomy. He had that surgery done a couple of days later, and it went well. Despite numerous attempts, we couldn't get Zach to start eating by mouth, so we made the decision to have a feeding tube placed in his stomach. This procedure was quick and simple, and has allowed us to actually get Zach the proper amount of nutrition daily - something he desperately needed.

After a month we were discharged and went home to a world of new machines, medications, home care nursing, and endless monitors beeping.

Things went smoothly for about 5 weeks, then we had to bring Zach back in to the ER because his breathing was all funky (sorry for using all these technical medical terms). He spent a couple of days in ICU getting antibiotics for an ear infection that was brewing and getting his "digestive" system cleared out, because things didn't seem to be moving along very well.

A week after discharge while sitting in the living room, Zach's airway became obstructed and his nurse and I had to use an ambu-bag to keep air going into his lungs. Paramedics were called and we were transported via ambulance to Memorial West, and then after he was stabilized to Joe DiMaggio Children's Hospital (yet again).

I was sure, and a broncheoscope later proved me to be correct, that his airway was collapsing below the bottom of his trach tube, and blocking it off. So, we spent a couple of weeks in ICU while a new - longer trach tube was made. We are back home again, and things seem to be going well.

Unfortunately, because of his hospital stay we had to cancel Zach's birthday party. It was going to be held at Incredible Ice, which had donated the exclusive use of one of their rinks and party rooms. We felt bad because the management there had donated what would normally cost a fortune, and we ended up having to cancel on them. Oh well, I guess that's life.

Zach's shaking incidents (now pretty much determined to be "sympathetic storms") are still ongoing. He's been taking a boatload of different medications, but nothing has really done the trick yet. We have a neurologist appointment today, so we will see what that brings.

Briefly for the rest of the family news....

Janine and I are fine.

Brandon is doing well. He is excited to be attending summer camp with Josh and Zach this year. Of course Zach isn't going yet because of some nursing issues, but that's another topic for another time.

Josh has been doing well. He graduated from elementary school and is on his way to the Health and Wellness magnet program at Driftwood Middle School. He picked up a few awards at his graduation ceremony, and had straight "A's" for the entire school year. In sporting news, his baseball team finally nailed down a playoff championship this past season. I attribute this success to my skills as an assistant coach.

With the thought that things will remain stable, I promise more frequent updates. Of course I've promised that before and you see how well that went.

It's only been 3 months, stop complaining...

Well, I'm back. My extended absence can be blamed on various reasons, but I'll just chalk it up to a general lack of time and energy.

From all accounts, our ICU billing issue has been resolved. I didn't want to really start ranting before because the physician's group was trying to work with us to get United to pay their proper fees, rather than reaching into our wallet. I wanted to bite my tongue on the off chance that things would go our way, and as luck would have it they did. Crisis averted.

Zach has been doing "fair" I guess. We stopped giving him Topomax (anti-seizure) about a week and a half ago and started giving him Levsin (treats stomach issues). It was working well up until yesterday when Zach had a couple of bad shaking incidents. Other than those he has been more alert, eating better, and doing better with physical activities. I guess we will have to wait and see how things go from here. In other news I gave Zach a much needed haircut. I don't know how he feels about it, but most people have said it turned out well. I'm sure they're just humoring me. When I was actually cutting Zach's hair I was trying to figure out which Johnny Depp character I was channeling - Edward Scissorhands or Sweeney Todd.

As for the rest of the crew...

Josh is three days away from turning 11. It's hard to believe I'm old enough to have an 11 year old son, but it's the truth. A pool party is planned for Sunday. Josh wants you all to know the party is at capacity, however you can all still feel free to send him gifts. He is a big fan of cash. Us parents have covered the gift thing by buying him a new leopard gecko. This one is a male named "Tang" because he is a "Hypo Tang" genetic morph. (3 guesses as to what color he is). Since Josh's other gecko (Spot) is a female, I guess there is a chance of offspring. We'll cross that road at a later date I guess.

Brandon is rapidly approaching 4 years old. Of course if he doesn't watch his little attitude, he may not live that long. (Just kidding) His favorite pastimes are watching whatever show happens to be playing on Nick Jr. (He's a big fan of the Dora-Diego-Kai Lan-Wonderpets programming block), playing/fighting with Josh, dragging his toys into the living room, throwing tantrums, and trying to stretch bedtime out as long as possible. Whoever coined the phrase "terrible twos" probably didn't have a child that lived to the age of 3, or they surely would have re-thought that phrase.

The wife and I are doing as well as can be expected I guess. Nothing major to report on that front.

Guess I'll close for now. Hopefully I'll be a little more prompt with the next update...

We owe what?

Greetings faithful readers.

Today NPT brings you a discussion of a topic that has become a recent thorn in my side - balance billing.

For those of you unfamiliar with the term, it goes like this... You visit a doctor outside of your insurance plan's "approved providers". The doctor takes whatever payment the insurance company provides and then bills you for the difference. Seems fair and simple except for....

Let's say you have a medical emergency and visit the local hospital (part of your insurance plan) for treatment. You are seen by an ER doc who sends you for x-rays which show you need emergency surgery. The surgery is performed and after it is done you need to recover for a couple of days in ICU.

After discharge, you thank god for your insurance because the only cost you have to pay is for the deductable.

Whoa, not so fast there Bud.

A few weeks later you get bills from the ER docs (not part of your plan), the radiologist who read the x-rays (not part of your plan), the surgeon (not part of your plan), the anesthesiologist (not part of your plan), and the ICU physicians (not part of your plan). They have all gotten their payments from the insurance company for "out of network" benefits and are looking to you for the balance.

So much for an "in-network" hospital if none of the doctors you actually see there are "in-network".

So, in our case everything from Zach's surgery was covered by insurance except for the attending physicians in the ICU unit, who are not part of our "network". There is a battle brewing between us, United Healthcare, and this physicians group.

There are so many nuances in this whole issue to get into, and I'm going to need to break this down into several posts - so stay tuned.

Happy Birthday to Zach

You know, I did an update a couple of weeks ago that seems to have been lost somewhere in cyberspace....

Well, I'll just lump everything together.

Zach finally got his cast off, and is now in a removable brace.  He's also off of the Trileptal.  Life has been much better.  He's got his personality back - no more sitting around all day like a zombie.  He's eating much better, and overall just seems to be much happier.

I think this has much more to do with the change in medication than getting rid of the cast, but I'll take it either way.

So, like the headline says, Zach turned 9 yesterday.  Because he likes to be in water, Mom booked him a swimming party.  Of course the skies of South Florida were full of the natural event known as "crap look at all that freaking lightning".  Never fear though, mom knows better about our weather patterns - so the party was booked at the British Swim School, an indoor facility.  Zach spent about 2 hours in the heated pool, and looked like he had a great time.  He was joined by an assortment of family and friends, and all the kids looked like they had a really good time.  Some of the adults (humble narrator included) who weren't in the pool got to find out up close just how much humidity can be given off by a pool heated up to about 90 degrees.  It felt much cooler outside the building, which if you have never experienced summer afternoons in South Florida is somewhat like sitting on the surface of the sun while trying to breathe through a wet towel.

Still though it was a great party, sweating off a few pounds won't do me any harm.

In other good news, Janine passed her state exam to become a school administrator, and has submitted her final work in her final class for her master's degree.  So, by the end of the month she should be on track to getting an AP job.  Of course it is mandatory that I mention that she kept up a 4.0 GPA in grad school while working full time, raising the 3 boys, and dealing with all of Zach's medical issues.  So those of you out there reading - don't try the "I'm too busy excuse" to not go back to school...

Janine's school where she works did very well on this year's state exams.  Since becoming the "Reading Specialist/Leader/Coach/whatever they call it this year", the school has gone from a "D" school to this year marking their fourth "A" ranking in a row.  Congrats to the kids for doing well, and the staff for buying in to the program.

Well, I'm out for now.  Hopefully I'll have a nice report on a getaway Janine and I are planning for this weekend - sans kids.  Yes, just the two of us.

I just realized...

That I haven't updated you all on the wonderful happenings in our lives.

Let's see, umm... well uh, now that I think of it there hasn't been all that much wonderful to report.

In the "general" news category, Zach has still had some issues.  When he went a couple of weeks ago to be fitted for his brace, they removed his cast and discovered some really nasty skin ulcers on his back.  They were in a spot that there was no way for us to see, so we have no idea how long they had been developing.  Janine took Zach to Dr. Joffe who checked out the ulcers, and decided that they weren't too serious (they looked serious to me, but I'm a little less experienced than he is), and had us apply a disinfecting solution to them 3 times a day. (We're still doing this actually)  He put Zach in a new cast with a hole in the back where the sores are so they can heal.  Once that is done, he can be put in the brace.  We're looking forward to that.

Zach has still been having seizure-like episodes.  However, they aren't seizures - the 24 hour EEG he had after having a major not seizure that required us to call 911, and for him and his mother to spend a night in a complete hell hole says so.

The details:  Last Tuesday Zach was scheduled to go to Broward General Hospital for a 24 hour EEG.  This isn't our regular hospital, but it is where our neurologist is on staff.  Monday night after dinner, Zach started having one of his episodes.  It started out as they usually do, but progressed until it was pretty severe.  At one point his breathing started to get all strange, so we thought it was a good idea to call the paramedics.  By the time they arrived, he had almost returned to normal, but because he (like all Hunters boys) has a restricted airway - the paramedics thought it best that he be brought to the emergency room as a precaution.  Now considering that he was due to be in Broward General in the morning anyway, we asked if he could be taken there.  Unfortunately, the ambulance wasn't allowed to transport that far, and had to take us to Memorial West.

Now, West is part of the Memorial system - which is the hospital group where Most of Zach's other doctors are on staff, where he gets his infusions etc.  We like the Memorial system.  West isn't as good in our opinion as Regional - but at least all of Zach's records are available and his doctor's have access to him.  We hoped that since he was there that we could get the 24hr EEG done, and avoid going to Broward General.  Yea - no. 

The on-call neuro (who saw Zach when he was in ICU when he was first diagnosed with "seizures") didn't want to admit him because he was being followed by another doctor, and he didn't know his history.  Janine called Dr. Benke to see if he could help, but despite his efforts, none of the staff neurologists would admit Zach.  (Dr. Benke was less than thrilled by all accounts.)

After the ER doctors consulted with Dr. Epstein (our regular neurologist), it was decided to have Zach transported to Broward General via ambulance.  He and Janine got into the room there at about 3:00 AM Tuesday morning.

After taking the other boys to school, I headed over to the hospital.  Let's just say Broward General's idea of a children's hospital is nothing like Memorial's idea.  Not even close.  I could not have been less impressed.

The room was tiny - there wasn't even really room for the two of us to sit down.  We had the joy of there being another patient in the room with Zach.  That itself was fine, except for the fact that this particular patient was having some pretty severe psychotic issues.  Being the parent of a medically involved child, I have sympathy for other parents in a similar situation.  This child would go from moments of normal behavior to screaming fits with some really "colorful" language.  He would randomly throw objects or keep hitting the nurse call button.  Lovely.  He really should have been in an isolation room.  Not just for the safety and peace of his roommates, but to give the poor kid some privacy and dignity.  I wouldn't want my kid to be some kind of public spectacle like this kid was.

Did I also mention that I didn't see the nurse wash her hands when entering or leaving the room?  Good thing there isn't some highly contagious form of the flu going around.

The nurse also got on my nerves by trying to tell me how to give Zach a dose of Trileptal.  She brought the dose in an oral syringe and couldn't understand why I needed a spoon to give it to him...  Her: "It's easier if you just give it to him in the syringe."

            Me: "We can do it your way and he'll spit it out, or we can do it the same way we do it twice a day - every day of his life, and he'll take it without any problem.  Which do you want me to try?"

Note to medical professionals - You may be highly intelligent, have attended the best medical schools in the country,  graduated with highest honors, and have more "medical" knowledge than I.   However, when it comes to my child I am a goddamned genius. Please don't make me prove you wrong.

Okay, off the soapbox.

Anyway, Zach spent the day and night hooked up to the EEG.  He didn't have any major episodes - probably because he had one the previous night.  He had a small one with dinner, but after looking at the recordings Dr. Epstein doesn't feel they are "seizures" - well at least not in the sense he originally thought.  He has decided to take Zach of the Trileptal and have him try Topomax instead.  It deals with a different type of seizures in a different way, and may be more effective than the Trileptal was.  Since we started weaning Zach off of the Trileptal he has been more alert and happier, so at least we have that to cheer about.

In other news, Josh got his braces off - which he is quite thrilled with.  He has to wear a retainer at night, but other than that his teeth are good to go.

Our baseball season ended last weekend with a loss in the first round of the playoffs.  Given the fact that we lost our first 11 games before going undefeated the last month, this would go down as "a long season".  Josh played really well though, so it's all good I guess.

We took a quick weekend vacation to Orlando so Janine could attend a workshop to get ready to take the state school administrators exam.  She went to the workshop on Saturday and the men went to Seaworld.  Janine joined us in a return to Seaworld on Sunday, and we all had a pretty good time.

The next weekend Janine took the exam.  She doesn't have the results yet, but I am sure that she did fine.  She is scheduled to graduate with her master's degree next month. (A few months early)  Once she graduates and has her passing grade on the exam, she will be ready to work as an administrator.  Well - get paid as an administrator at least.  She's been doing a lot of administrative work for years, now it's time to actually have that job title.

Well, I guess that's all that's going on for now.  Catch you later.

All cracked up

Since the cast change a couple of weeks ago, Zach has been obviously been in some discomfort. A good bit of this we blame on his stomach issues. However we've also been pretty sure that his cast is a bit too tight as well.

So, yesterday after his infusion we too Zach to see Dr. Jofe, who agreed with us that it looked too tight. His solution was to split the cast from under each armpit all the way down to the waist, then to tape the halves together. This allows the cast to flex and expand a little while still protecting Zach's back.

The actual cutting of the cast scared the crap out of Zach. Literally if you know what I mean.

Well, we eventually got that mess cleaned up and we were on our way. Zach seems to be a little more comfortable now thankfully. He is going to see Dr. Tucker this afternoon to follow up with his "digestive" issues.

I'm still trying to figure out what motivates a doctor to want to specialize in the poop field?

I can imagine the converation when the med school students are sitting around discussing their future plans...

"I love kids, I'm going to be a pediatrician!"
"I'm interested in the heart, I'm going to be a cardiologist!"
"Poop! I love to deal with poop!" (This is the point where his friends decide to sit just a little further away from him...)

Anyway, Dr. Jofe is going to be taking Zach out of the cast and putting him in a brace in a few weeks. (Yea!) Hopefully that will make life better.

What a gas

Well, I think we may have found the cause of Zach's recent problems - gas.

We had noticed, and his physical therapist had mentioned that Zach has been burping lately. Seeing as though he has never done this before, I started to think that prehaps it is severe pain from gas that is causing his episodes and his lack of appetite.

So, a few days ago we started giving him Gas-X before meals. Since then, he hasn't had any major "episodes", and is starting to eat normally again. The Miralax is also starting to do its thing - too well at times...

Life is much better, but MPS still sucks.

Here's how things are going in our world....

It's been rough.

Zach had his cast change done last Monday. Due to a scheduling mix-up Dr. Kaufman was not available to sedate him. Although that probably had nothing to do with it, Zach had issues with the anesthesia he was given. The procedure itself went fine, but during recovery there were issues with his heart rate dropping. Apparently he was in too deep of a sleep. They got an IV with some sugar water flowing into him, and that apparently woke him up enough to keep his heartrate up.

He was sent home that afternoon, but slept the rest of the day and night - not waking up until Tuesday morning.

When he did wake up, he went into one of his "episodes". The full body shaking, screaming etc. Janine and I decided that these episodes had gone long enough, and decided to get to the bottom of it ASAP.

We were able to get an appointment to see Dr. Tucker who is a pediatric gastroenterologist for that morning, and with Dr. Epstein our neurologist for that afternoon.

Armed with a video of Zach's episode we headed off to Dr. Tucker's office. After examining Zach and seeing the video, he felt that Zach wasn't having a seizure in the typical sense. He felt that it may be a reaction to pain, and that the pain may be related to his stomach in some way. Most likely constipation in some manner. (Ever since his operation this has been an issue.)

He didn't feel an obstruction in the bowels, but had us take an x-ray Thursday while at ERT just to rule it out. Dr. Tucker told us to have Zach take the adult dose of Miralax to hopefully get his system moving. He also told us to try to get Zach to drink 4 bottles of Ensure a day to try to fatten him up a bit. (He's dropped a good amount of weight since surgery.)

Of course Zach has no desire to drink 4 bottles of anything. Since surgery, it has been really hard to get him to eat. I assume it has something to do with his stomach issue. Hopefully it's just constipation, and not something harder to diagnose like reflux.

At our visit with Dr. Epstein he viewed the video as well and did not feel Zach was having a "seizure". He couldn't be 100% sure without actually having him hooked up to a EEG at the time it happened though. He also felt that some sort of gastric issue could be the cause. His suggestion was to keep Zach on his anti-seizure medication for now, and see if by giving the Miralax, we are able to get the "episodes" under control. If that's the case, then we can take Zach off of the anti-seizure medication.

Of course this doesn't really address the suspicion I have that the anti-seizure medication may be part of the cause of the stomach issue. It's the only new medication he is on since the surgery. Aside from being in the cast, there is nothing "different" that I can think of that would cause Zach to not want to eat. The only logical choice is either the cast or the medication is upsetting his stomach. Which do you think would be more likely?

I really hope the Miralax does Zach some good soon. It's gotten to the point where I am worried that he is not eating enough to support his body. He's already really thin, he doesn't have any more weight to lose. I don't want to see him with some kind of feeding tube, but I'm afraid that if we can't get him eating soon that will end up happening. Depressing.

Have I mentioned MPS sucks.

Update time

Here's all the news that's fit to print...

Zach is doing as well as can be expected. He seems to have adjusted to his cast finally. Of course it is going to need to be changed in the next two weeks or so. Hopefully the new one will be similar enough to this one so that he won't notice a difference. We're hoping for him to be placed into a brace, rather than a cast, at some point - but he probably isn't ready for that yet.

Zach has been standing up and walking with assistance, which is a really good sign. He is still up on his toes though. I think we are going to wait until summer to get his ankles casted, but that's up in the air for now. Once that is done, he should be able to walk flat footed again.

In other news, Josh's baseball season is upon us. I've taken the plunge and am the head coach for the team this season. We've managed to lose our first two games by a combined score of 25 to 8, but hopefully we'll get it turned around here sometime soon. On the good side of things we can't get much worse! It's all improvement from here on out...

We took the kids to the Renaissance Fest last weekend. It's quite an umm..... experience. Brandon was a bit freaked out at first because everyone is in costume, and there is a ton of activity going on. He eventually got over it and seemed to have a good time. I actually felt bad for some of those people in costume because it was about 85 degrees out. (In mid-February - gotta love the South Florida weather.) The was even a guy walking around in a full suit of armor. I'm thinking that guy had to be really hating life that day.

Now, if you work there and have to dress in costume I can understand it. That's your job. What I can't understand though are the freaks that don't work there, but dress up in the costumes anyway. Are they trying to fit in better? Show their dedication to late 15th century Europe? C'mon people - that's like wearing a Mickey Mouse costume when you visit Disney World. No - the people working there don't think you're cool because you have "Renaissance" clothes to wear. They think you're a dork. Oh yea, they aren't impressed by the "Olde English" accent you are trying to use while ordering your frozen lemonaide either.

Never a dull moment...

Up until last night, the past week went fairly well for Zach.

He was eating fairly well, and seems to be adjusting to wearing his cast. He was back at school, and life has been getting back to its normal routine. (Well, normal for us at least.)

Then, just as we are getting settled to watch the SuperBowl, Zach started having what may (or may not) have been a seizure. He was shaking uncontrollably, hyperventilating, and his body temperature had shot up. After about 3 minutes we gave him a dose of Diastat per his neurologist's instructions, and called 911.

The friendly members of the Miramar Fire Rescue Department showed up within a few minutes and whisked away Zach and Janine to Memorial West. I followed a few minutes later.

By the time the ambulance arrived at the hospital, the shaking had pretty much stopped. We all spent the next 6-7 hours in the ER while trying to figure out if this actually was a seizure, if it was a seizure - what was the cause, was the Dilantin not working, why the remote control for the television I was watching would only allow you to cycle UP through the channels - even if you JUST WANTED TO GO BACK ONE DAMN STATION, and should his medication be changed?

Alas after a battery of tests, and much cursing at the remote on my part, we came away with not too damn much info. The neurologist wanted to switch his anti-seizure medicine, and we were sent off into the night (well, morning really) with prescription in hand.

We were in luck in that the nearest 24 pharmacy was only a couple of minutes away. Of course their computer system was down so they couldn't fill the prescription. Just our luck. Off we go to another pharmacy. When we get there we find out that Zach needs something like 120 cc of this medicine a month. However it is only dispensed in a 240 cc bottle. This doesn't seem like a big deal except for the fact that the insurance company won't pay for any more than a month at a time. Well, that and the medicine is about $200 a bottle without insurance. The pharmacist called the ER docs, but they basically said we were stuck because that was what the neurologist ordered and they couldn't change it... Now, realize this is all happening at about 2 in the morning. We decided that since Zach had been given a 12 hour dose in the hospital at about 12:30 that this could just get sorted out in the morning. (well, later in the morning)

As it stands, Janine was going to make some calls this morning to see what to do next. I haven't heard from her yet, so I assume nobody has been dumb enough to piss her off so far. Once she gets this medication thing taken care of, I'm going to have her try to find out why some moron would design a remote control that only allows you to switch the channels in one direction.

There's no place like home

Well, after more than a week of living in the PICU of Joe Dimaggio Children's Hospital, Zach finally came home Tuesday night.

After alternating nights at the hospital for that week, it's safe to say that both Janine and myself were quite sleep deprived. No matter day or night, there is always the same amount of activity going on in the PICU, and because the glass is so heavily tinted, there was little sunlight to be seen. Put that together for a few days and you really have no idea what time it is, or if it is day or night. Zach wouldn't really ever sleep for more than a few minutes at a time, which didn't make things any easier.

At one point after looking at the clock at seeing it was 9:30 I actually asked the nurse if it was AM or PM. It was really freaky there for a while... If they ever need actors to play the part of Zombies in a horror movie, they could do the casting right in the local PICU - wouldn't even need to use much makeup.

There are a million things that went on while Zach was there, but it would take forever to write, so I'll give it to you in a brief format...

After surgery Zach slept, then couldn't sleep, then wouldn't sleep, had a seizure (maybe), had another, got put on anti-seizure medicine, slept, itched, itched some more, slept, itched, itched some more, got some medicine for the itching, slept, itched, got more anti-itch medicine, slept, couldn't poop, got medicine to make him poop, didn't poop, got an enema, got another enema, still didn't poop, got more medicine to make him poop, pooped, pooped, really pooped, wow look at all the poop, slept, woke up, didn't sleep, got arm splints to stop him from itching, hit various people with the arm splints, got more anti-itch medicine, slept, woke up, complained about the arm splints, learned to itch face while wearing arm splints, got his cast, pooped some more, ate a small bit of food, pooped again, man where is all this poop coming from, got discharged.

That's it in a nutshell.

Did I mention that while Zach was in surgery, I got a call from the marathon people because the Miami Herald wanted to do a story on Josh? He was going to be the youngest runner this year. It killed me to tell the guy that we were not going to be doing the race. I know that given everything we have been through the past couple of weeks that I at least am in no shape to run. Still though, it would have been great to get our story in the paper. The guy I spoke to from the race said to get in touch with them if we are going to do the race next year and they will help with some publicity for NPT, so I guess it's not a total loss.

Quick surgical update

I only have a few minutes, but here's how things are going...

The surgery went well for Zach. It took about 3 hours for the procedure itself, and there weren't any real complications.

The recovery was rough for Zach for the first day. The doctors had trouble getting the right mix of sedatives and painkillers that would keep him comfortable, but I think they have it worked out now.

Zach had two seizures early yesterday (Tuesday) morning. Nobody is sure why. It's probably related to the surgery/pain/stress that he is going through. However it could just be MPS. In any case, he is on anti-seizure medication for now, and will probably continue on it once he goes home.

This morning (Wednesday) he is running a temperature of about 103. His blood work isn't showing any infection though. Janine was told this sometimes happens in fusion cases, and may just be the way the body reacts to the rods along the spine. The doctors don't seem too concerned about it yet. I'll know more when I get over to the hospital this afternoon.

'Tis the season for giving...

Blood that is.

In preperation for his surgery on the 12th, Janine and I had to donate blood in case Zach has a need for it.

Now, due to a rather unfortunate incident involving a lady at the Red Cross donation center that I still to this day refer to as "Nurse Pincushion", I have not donated blood since I was about 20 years old.

I got some giggles from the questionaire I had to fill out before making the donation. One of the questions asked if I had ever or had "sexual contact" with someone who took money, drugs or other payment for sex since 1977. Now, I'm pretty sure on the money and drugs thing - the thought that I am talented enough in that field to actually get paid for it is quite laughable come to think of it. Since I've been married for quite some time, I've never had a need to pay for sex. (Beg for it perhaps...)

Still though there is that "other payment" issue.... Does that mean if a guy takes a girl out on a date to a nice resturant and they end up doing the deed later on that evening? Or is that not "payment". These are the things that go through my head while I'm sitting there waiting on the nurse to enter my information into her computer. Obviously there are more pressing issues I should be spending my time thinking about, but that's just how my mind works.

As part of the whole donation routine, they give you a "mini-physical" of sorts. My blood pressure was 126/84. Not great, not horrible. Actually, it's usually at least 10 points lower than that, so I'm not really concerned. Pulse was 62 which I'm quite pleased with. It was closer to 90 before I started on the exercise bike.

When you donate blood, they also test your cholesterol level. I had to log in to the blood center website to get those results a couple of days ago. Considering that I'm not known for my healthy eating habits (Damn pizza - why can't I quit you!), I wasn't really looking forward to these results. I was expecting a number in the mid 200's. Enough to send me off to Lipitor land. I was actually paranoid enough about it to look up some of the anti-cholesterol drugs out there.

Did you know Lipitor has "accidental injury" listed as a side effect? As in "People who take this drug are at a higher risk of getting hit by a bus". I'm not sure how they measure that, but it's good to know. Crestor does not list "accidental injury" as a side effect, so that's obviously the one to go with. I'm an expert on "accidental injuries", I don't need any help in that department.

So, imagine my surprise when I logged in and found that my cholesterol is only 182. Safely in the good range. I'll chalk it up to genetics. I didn't get a good/bad level breakdown, but overall it's not that bad.

So on to the bad news...

Due to Zach's surgery, we have decided not to run the half-marathon on the 25th. There are just too many unknowns at this point to allow us to really dedicate the time needed to the race. We'll revisit the idea for next year. However, we have decided to enter into a few of the local 5K events. It's a long story, but Josh actually jogged over 5K on concrete, wearing baseball cleats after a 2 hour practice in about 30 minutes. Given ideal conditions I think he could probably shave close to 10 minutes off that time. We'll have to see how it goes.

I'll update on Zach's surgery as things progress.

New surgery date

We finally have a new date for Zach's spinal surgery - January 12th.

Of course that's a double edged sword of sorts. We want to get the surgery done in order to help make his life better. At the same time though, there are all the issues that we are going to have to deal with both pre and post surgery. Really, for me at least, it would be better if they just called and said have him in for surgery tomorrow at 6:00 AM. Then there would be no need to sit around for a month and imagine all of the things that can go wrong. As it stands though, we get to stress about it until the 12th.

I'm not sure at this point what effect this will have on Josh and I doing the race on the 25th. There's no way of knowing what condition Zach will be in at that point. I can't see leaving Janine alone to deal with Zach fresh out of surgery, and Brandon while Josh and I spend the day jogging around South Beach. It's possible that Zach will be fine by that point, but we'll have to play it by ear...

Now that baseball is on a short break, Josh has come up with another activity to occupy that pesky free time on Saturdays. He has become a proud member of his school's chorus.

For any of you that have had the.... pleasure(!!!) of hearing Josh sing, you may be somewhat surprised at this turn of events. Apparently the selection process for this chorus wasn't overly rigorous. Now, as a parent it's probably bad form to criticize your children, but I've gotta stand by this one. To his credit though, he laughs as hard as anybody whenever the subject of his singing prowess is brought up. He's having fun doing it, and could care less about critics.

I was somewhat fearful when we arrived for the "premiere" of the group last week at the city tree lighting ceremony. However I was mildly surprised that they weren't all that bad. Not the Vienna Boy's Choir to be sure, but not horrible. Apparently if you put together enough members, even a chorus of adolescents with cracking voices sounds okay.

I was asked at the performance why Josh was in one of the back rows. I explained that the more ummm.. "powerful" voices are kept to the rear so they don't drown out the more "delicate" voices in the front. That's my story, and I'm sticking to it.