Monday, March 24, 2014

10 reasons I haven't blogged lately...

...and why I've abandoned you poor people who love Baby-D and look for his smiling face on new posts :

1. Dominic is now a professional "de-cannulator" (a.k.a. trach-puller-outer).  His trach seems to be coming out more and more often lately.  The other day in the car he was on the vent and I noticed his trach looked sideways.  Sure enough, it was out and the vent didn't alarm (never does- grrr).  Emergency road-side trach change, laughing hysterically afterwards to relieve our nerves (not funny-ha-ha, but funny-can't-believe-this-is-our-life), and a beer afterwards to celebrate his breathing.

2. Dominic doesn't sleep.  At night anyway.  He has no regulation in his sleep/wake cycle so he will sleep all day then wake up at night.  Of course I have to hold him til' I can't stay awake any longer so he remembers who his momma is, not the sweet African woman he chills out with all night (errr, that would be his nurse- not a random African woman.  In case that needed clarification.).

3.  We've moved!  God always provides, and this time he provided a new pad for Baby D that has it's own therapy room.  It is great, all his equipment in one room, all the home school stuff in another.  No co-mingling of therapists talk/school talk.  Perfect.  I'm trying to figure out how to hang a therapy swing in there... because if I can't work as a PT for now, at least I can have a PT gym in my house.  :)

4.  I worked out.  Once.  But I was way too tired that night to write.

5.  My kids have too much stuff.  I seriously thought I would be unpacked in one day.  Seriously.  Well, 14 is almost the same as 1, right?

6.  Dominic has too many appointments.  True, the doctors visits have slowed... and true they are all during the day... but I'm fishing for reasons here.

7.  I'm lazy.  There, now the world knows.

8.  I like to read.  I have a small window at night to choose one activity only (prior to passing out): reading, talking to Mike, writing a blog, preparing for the next school day.  Reading normally wins.

9.  There's been no big news.  Well, except all the close death-calls.  But hey, that's old hat by now, right?

10.  We got a new neurologist.  That technically doesn't count as a reason why I haven't blogged but I have been bummed to loose our old one.  He was after all, my favorite Doc.  Remember, the big, goofy walking medical school?  I love him.  Our new one is good too... but he has big shoes to fill.  Literally.

So there, 10 excuses for you.  Forgive me.  Even if I don't have anything to say, I'll try to post pictures anyway.  That's what you really want anyway, right?

Sleepily yours,

Anthony received his First Holy Communion last month!
Afterwards, to celebrate, we brought the whole family to a ranch, thanks to some very good.generous people.  There was a little house we stayed in with electricity so Dominic could go.  A  family retreat- it was the best gift!
Mike watching the other kids play while Dominic talked in his cute trach-baby way
Chillaxin'.  He says he could get used to this!

Tuesday, February 11, 2014

Cowboy Dominic- YeeHaw!

Dominic getting ready for therapy!
As soon as we pulled up to the ranch, we were greeted by Dominic's physical therapist, wearing her usual inviting smile along with two Jerusalem donkeys (the kind with crosses on their backs) who were not of the shy type.  In fact, they were so eager to greet their new visitors we were wetted by their slobbery, bristly lips while walking to the barn.  Mary was not a fan of their boldness and kept hid behind my mom who had escorted us to help out.  On the barn porch was a small but rather portly little pig named Hamilton, his muzzle down in a bowl of food, snorting and slobbering his way into Mary Grace's heart.  She would have gone closer to play with him but Jasmine and Belle (the donkeys) wanted a lick of that sweet girl, which was enough to deter her from any further friendship with the sweet little piglet.

We walked into the barn and I was taken aback by the enormous horse who was standing in front of me.  Because I have not yet learned a solitary thing about this new type of physical therapy using horses, I assumed a little guy like Dominic would be on a little horse, just his size.  But instead there stood in front of us a giant of a horse, a 24 year old draft horse, the type with long fur encircling his ankles.  He was being groomed and eating treats, great globs of green-treat slobber falling from his mouth.  We patted his head and I helped Dominic feel his fur.  Dominic showed his excitement by raising his eyebrows in the curious way he does- that way that speaks for his whole body.  That boy sure does have great eyebrows.  What he lacks in the ability to express himself with his body, he makes up with great, expressive eyebrows. 

Dominic was fitted with his helmet and off to the arena we went (drove actually because I'm too lazy to carry that big ol' boy that far).  I guess by now you are wondering why in the world we are at a ranch, looking a horse, and putting a helmet on Dominic, eh?  He has started hippotherapy, which is physical therapy using a horse as a modality, or tool, to facilitate the desired movements in the patient.  Children can start at the age of two and his physical therapist just happens to be a certified hippotherapist!  Back to the story.  To mount the horse, there is a big box, about 4 feet high where we all stand.  The therapist mounted first then took Dominic and sat him in front of her.  The whole session, there was a horse-leader and two side-walkers (my mom and myself) to make sure Dominic was safe and sound.  We walked with that horse around the arena for about 30 minutes and Dominic would off and on smile, showing his pleasure of being on top of his new friend named Dixie.  The therapy was fun, but very tiring for him, and after 30 minutes he was just about a little mush-pot.  We gave him a rest and our sweet therapist let each of the other kids have a turn riding Dixie for a few minutes.  She realized how the siblings of special needs children often get pushed to the side, unable to do the "fun" stuff like play during therapy or get all the attention from the doctors and nurses.  I am so grateful for her heart that is open to the needs of the siblings too- that is a rare find to be sure.

MiMi enjoying the beautiful scenery
After our session, we plopped our tired selves into the van and rode back to the barn where sweet Dixie was un-tacked and let to cool down.  We all fed her treat pellets as a reward for doing such a good job and she covered us in green slime, though this time thicker and more abundant due to the hard work she just finished.  I was helping Dominic put a pellet up to her lips when I heard that familiar whistle.  I looked down and sure enough Dominic's trach had popped right out.  I yelled to my mom "the trach is out!" and she ran lightening-fast to the car to get the trach bag.  I laid Dominic down on the barn floor (where an hour ago the donkeys were inspecting us) and unable to get the trach in time I used my grimy hands to put the same trach back in- having to touch the part that goes in his neck.  He smiled, as usual, when he's given us near-heart attack moments, and I froze for an instant realized what just happened.  You'd think you would get use to the whole decannulation thing, but I never seem to.  Something about the whole 'can't breathe without this thing and turning blue' business that gets me.  I'm sure your nose is wrinkled right now thinking about my horse-slobbered, dust-covered, barn-dirt (nice word for manure) containing hands touching that trach to put it back in, but hey... he's survived worse!  And after all, a little dirt is good for kids... right???

During that session when I saw him slowly start to sit more upright, start to hold his head a little higher, look around as if a tad bit more alert I felt the first glimmer of hope in his improvement that I have had in quite some time.  Normally, I fully expect him to continue to decline in function, but that little sweet bag-o-treats just keeps proving me wrong.  I am hopeful this new therapy will help him gain the strength to enjoy his family, his home, and his environment just a little bit more.  Who knows, maybe he'll even learn to sit all by himself!

So here's a heart-felt thank you to his sweet therapist and her unyielding commitment to make his life just a little better.  Ride on, Cowboy Dom!
Anthony getting his turn.  (Ignore my high-waters.  What, you didn't see them til' now?  Shucks)
Mary Grace refused to go alone so her bug bubba Jake obliged and let her tag along.  :)

Wednesday, January 15, 2014

Dear Angry Dad at the Hospital,

I saw you yesterday in the hospital cafeteria play room.  You sat in a booth, hunched over in your mechanics work shirt.  You were tired, ragged, and damn mad.  I saw your kids run around while you waited.  You were frowning and had your face buried in your phone.  I saw you yell at your children when they asked for attention.  All 5 of them.  I saw you scold your littlest one, who must have been 4 years old, for not knowing how to put his shoes on.  You yelled at the other kids who stole away with your Diet Coke.  I saw your teenage daughter's attempted for attention ignored, pushed off.  She shrugged it off and went back to her sisters and brothers.  I could see the weight of the world on your shoulders.  And I get it.

After all, people don't come hang out in the hospital play room for fun.  You're there because one of your children is sick.  This could very well be the worst day of your life, the day your child gets that awful diagnosis or the day chemo starts.  Maybe you had a fight with your wife this morning and this day that is dragging on and on and on has just gotten the best of you.  Surely you have to return to work to finish out your labor intensive day.

The truth is we've all been there.  All of us fellow hospital parents I mean.  We've waited those long waits.  We've succumbed to the temptation to get pissed at the world, pissed at the staff, pissed because we can't take one more day of hospital food.  We've been down and out.  Done.

Our healthy kids have waited too.  They've feasted on the crap they pass off as food in the cafeteria.  We've given into their incessant pleas for goodies and paid for it with the subsequent sugar highs... and lows.  We've watched TV till we saw double and left that same seductive box a little emptier in our souls than when we began.  We've gritted our teeth watching the nurses hurt our kids, for the good of our child of course.  We've waited.  For hours.  And hours.  And the moment we finally leave the room to grab a quick bite to eat, that elusive person for whom we've already waited 8 hours has come and gone.  Impeccable timing.

It's the waiting that's the worst part.  It's the sheer mental and physical exhaustion of just being there, doing nothing, waiting.

I get it.  I understand why you're so dang mad.  I've been mad too.  Just like you, I've wanted to bury my soul into useless things, to sit with my face illuminated by the glow of my phone or the TV.  Actually, I have done this.  And I've felt any residual hope, or life, or happiness sucked right out of me during those difficult low moments.  The truth is, these pointless things will not get us through, they can't fix what's broken.  Being too busy to watch our kids newest amazing acrobatics won't help anyone.  Not us, not them.  These times are one long, brutal fight.  A fight to keep afloat.  A fight to keep the faith.  A fight to not allow your soul to die off little by little. 

What you need dear Angry Dad, is to put your phone down.  To sit, waste time with your kids.  Watch their stupid little rolls and tricks.  Laugh at their silly antics and their game of chase.  Help your kids put their shoes on.  It is not only you who is being crushed by the gravity of the illness your sick child has.  It's your kids too.  And your wife.  And any other family you are lucky enough to have standing with you at this terrible time.  They are all crushed.  Down.  Angry.  And that is why you must stand.  You must be the strength that holds everyone together.  You HAVE to be present, to be the safe place your kids can go.  The person who can affirm the unfortunate reality of the situation while at the same time hugging that worried child and letting her know you're not going anywhere.  And especially your teenager.  If you don't hold her, I guarantee she'll find someone who will.

But know Sir, you are not alone.  All of us fellow hospital parents are silently behind you.  If nothing more, to just give you that familiar look of understanding.  But it is not us that you must rely; it is Him.  I have told you to stand, to be the glue.  But rest assured, it is not you who will be holding everyone together.  You are not strong enough.  You are weak.  And it is in this weakness that you will find Strength.  Allow yourself to be broken down, pleading on your knees, utterly demolished.  It is precisely then that your Strength will come, precisely at the moment you admit you can't do it that you will be rescued.  Your Strength will be Him.  He who carried the weight of the world on his shoulders.  He who sweated blood for you.  It is Him.  You no doubt have been given more than you can handle.  After all, if you are never stretched, how would you ever grow?  So, rely on His divine providence.  His unfailing fidelity.  You take the first step, He'll carry you the rest of the way.  This will not be easy, but just remember, His grace is sufficient.

A fellow hospital parent

P.S.  Please remember these little words of wisdom dear Angry Dad.  You may be the one telling them to me next time.
"The Dream of St. Joseph."  Trust, Angry Dad.  Just Trust.
Saint Joseph, pray for us!

Monday, January 13, 2014

Don't cry over spilled... avocado??

As you can imagine, there are a lot of spills in our house.  Four kids combined with 3 meals and two snacks a day at home, we average a spill a day at least.  These are normally no big deal: a glass of milk here, a cup of ice water there, some soup maybe, Fun Dip (blame my mom, she bought it for them), little water puddles under Dominic's vent tubing.  Nothing note-worthy really.  With the business of homeschooling and preparing (and cleaning) up 3 meals and two snacks every single day of our lives (sigh), you might expect the kids to be the biggest culprits of messes in this family.  Well, dear reader, you guessed wrong.  I will not spill the beans as to my extreme messiness as a whole, but only give you a little insight into life with me.

Imagine if you will, 3 hours of washing, chopping, cooking, blending and jarring baby food.  My mom and I have already gone through a cup of hot coffee and another glass of iced coffee, the chatter is slowing, we're ready to be done.  And then, SMASH!  A box my mom was carrying had it's bottom fall out and the result was a big ol' fat hot mess.  There was glass mingled with Dominic's breakfast blend: avocado, oatmeal, butter, egg yolks, apples, and bananas everywhere.  On the floor, up the cabinets, on the back of our pants, in my Birkenstocks, across the kitchen floor under the dining table, on my shirt.  We stood still, silent in complete disbelief.  Should we be upset that all that work was now scattered across the floor?  Should we be mad at the dang box that broke?  We looked at each other in this decisive moment and opted to take the path of hilarity.  Loud laughter filled the room mingled with sighs and "oh man's."  My sister, who had been cuddling Dominic in the living room, peeked around the corner and saw our mess.  Lucky for her, she had only enough time to snap a few pictures before having to leave to get her girls from school.  I just stood, staring at the mess- really unsure where to begin cleaning this massive disaster. 

After all the goo covered glass shards were scooped up and the floors mopped, a slippery film remained.  We could have mopped a second or third time, but we preferred the danger of repeating the same accident and getting it all done to having to waste any more time cleaning.    After all, this is the woman from whom I learned it is better to break you leg and carry 27 grocery bags (and a baby on your hip) in at once than to take a second trip.  I am just like her in this way- ferociously, hopelessly stubborn.  Luckily though, we finished the rest of the breakfast and dinner foods without further incident, taking special care to walk flat footed across the slimy parts of the floor as to prevent any further spillage.  The floor remained nasty for 2 more days (lest you think me super-mom or something) until finally last night I scrubbed the remainder of dried breakfast blend from most every surface in my kitchen.  Our main objective after all, upon completion of this labor intensive work that is Dom's food prep, is to collapse on the couch for a few blissful moments of uninterrupted sighing and coffee drinking.  A perfect reward for a job well done. 

Here's to you Dominic- I hope you enjoy the rest of your breakfast food that actually made it into the jars and in the freezer.  You may be a mess, but you're worth it!

In and For Them,

Wednesday, January 8, 2014

Duct Tape and G-Buttons

Wouldn't that be a great name to a TV show?  Hmmm, maybe sometime in the future.  But for now, let me tell you a story.  It involves a sweet little man, his g-button, and the night it almost fell out.  Mike was feeding Dominic his dinner of yummy, thick, green puree when he gasped- which by the way is a big no-no in our house.  In our house a gasp can mean only three things: #1 your or someone else's trach has come out, #2 you or someone else are blue, or #3 some other unimaginable medical emergency is ensuing, usually involving choking or broken bones.  So, naturally, a gasp results in all the adults hearts dropping, adrenaline raising, and one or both of us running ready to resuscitate someone, which may or may not be accompanied by pushing little people in the path out of harms way.  A false gasp then earns you a stern "if you're not dying, don't make that sound!" scold.  Perhaps we need a little R&R to back us away from the edge of the cliff.  But I regress.

As I was saying, Mike gasped, to which sound I immediately attended to what was happening.  He was holding his g-button in and told me it was coming out.  I didn't quite get it (I was still scanning for purple lips and decannulated trach from that gasp).  Again, he told me his button was falling out.  So of course I pulled on it to check, because you know, how could I possibly trust this man I've been married to for 11 years who takes care of all of us :/.  Sure enough, the balloon that holds it in had busted.  Luckily, I had a spare.  But then, uh-oh, I remembered I had opened it to use the special tip syringe to re-inflate a g-button a few months ago.  And since then, it has gone MIA.  This brand new shiny g-button had been made useless by the absence of this magical little special tip syringe that was needed to blow up the balloon that holds it in the tummy.  Dang.

So, like any good red-blooded Texans would, we pulled out the Duct tape.  Ok, it wasn't actually Duct tape, but it does make for a more fantastical story.  It was plain ol' medical tape.  But the fact remains we taped the button to his belly.  The poor baby had tape all over his little fat, roll-y self.  The last thing we needed was for that button to pop out and 200 mls of 'yummy' green goodness to spout out.  The next morning, after a few stressful, careful feedings, I picked up the new g-button and
replaced the broken one.  I sure wish I would have taken a picture of this, but alas, I did not find the humor in it while it was happening.  It's only now I can laugh at the ridiculousness of this crazy life we're in.

Here's to keepin' your buttons in and your face pink ;)

In Them, Chasity

Tuesday, December 17, 2013

Dominic's Terrible Two's

The most handsome little man in all the world
Until recently, I was convinced of the fact that having Dominic, the little saint that he is, excluded me from the right of passage every parents must endure, commonly known as the 'terrible two's.'  You see, all Dominic does is love.  He cuddles, smiles, sometimes coo's and "talks."  What could he possibly do wrong?  There are no temper tantrums, no "sizzling like bacon" fits, no arguing or screaming.  No, those are way too tame for our little man.  He has chosen to forgo such expected expressions of his two year old rebellion and opt for something a little more, say... original.  What our little saint does is far more dangerous: he pulls out his trach.  That's right, the little booger-lootsey pulled out his trach. 

I was working in the kitchen with him right next to me in his feeding seat when I froze.  A strange sound pierced me ears, a sound of forced air, like a strong wing being blown through a straw.  Instantly realizing what that sound meant, I dropped what I was doing and checked him.  Sure enough, there was Dominic, smiling mind you, with his trach out, struggling to get any air through his little collapsed airway.  I went into a frenzy, grabbed him and laid him on the kitchen floor.  I quickly realized I had no spare trachs with me so I scooped him back up and ran to his room, yelling for Jake to bring the suction.  By the time I had him on the changing table, he was beeping (his oxygen monitor) and was turning from purple to blue, on his way to grey.  I did a quick trach change and gave him the highest flow oxygen our liquid oxygen tank allows until he pinked up.  I scolded him as I stood there and shook "Don't EVER do that again" I said, followed with a immediate "thank you, Jesus.  Thank you."  The kids stood behind me, still as statues, eyes wide like a scared deer.  I let out a great sigh of relief and gave the kids a hug.  We talked about what happened and they told me they were scared but they were ok (except for Mary, who of course ensured me she was not scared at all.  sigh.).  We went about our day and finished getting ready for mass.  The rest of the day went on as usual.

I wish I could say this is the only manifestation of his terrible two's, but alas, it is not.  He has had several more episodes (though they did not contain the trach being pulled out).  He has stopped breathing a time or two and has required some quick thinking, stress filled interventions.  So what has he gained from these little escapades?  More vent time.  He has gone from the vent only at night while sleeping to the vent 12 hours a day and at all times when asleep.  Turns out, these aren't due to the terrible two's after all (well, except him pulling his trach out).  He was having more episodes of not breathing and of not being able to maintain oxygen levels because of something called residual lung capacity.  You see, he is not strong enough to breathe deep enough to keep his lungs inflated, which over time lead to decreased oxygen levels and lots of apnea.  This has been reversed by the increased vent time.  There doesn't seem to be any going back, not any time soon anyway, to the splendid days without the vent.  No, it seems our little saint's rebellion can only be satiated by that loud machine that fills our home with noise and beeps.  We are thankful however for that machine, however ridiculously difficult it is to transport, because without it out little saint may have had the rebellion of rebellions.  Here's to no more "terrible two's" for Dominic!

Some great pictures of our family vacation this summer.  Vroooommmmm!
Silly faces with cousins.
One little, two little, three little...

Thursday, November 14, 2013

A new diagnosis and back on the vent

A few weeks ago we got a call from the genetics office saying our long-awaited whole exome sequencing results have finally come in (after more than a year) and they have a diagnosis for us.  Dominic has something called genitopatellar syndrome, an extremely rare, newly described condition.  Never heard of it?  Don't feel bad... the geneticist hadn't either (nor the neurologist, pulmonologist, etc...).  In fact, it has only been documented 18 times in the medical literature.  This is a disease where most affected people don't survive until birth, and and then the majority very shortly after birth.  Of the ones who do survive, most die in early childhood while there are at least 3 cases I know of who have survived into pre-pubescent years and the teens years.  The syndrome basically describes a bunch of common characteristics that all of the affected children share, such as absent or disfigured patella, severe mental retardation, lack of speech and walking development, hearing problems and a few more.  The problem is the list of problems that go along with this disease is no where close to Dominic's problem list, so we and the neurologist are convicted (along with a convincing genetic test) that he may have another disease called hereditary spastic paraplegia.  Tests are out on that one.  Our little saint is going to be published in the medical literature along with another boy who has been newly diagnosed.  His way of being a famous rock star I suppose :).

Of the kids who did survive to be born, all of the documented cases that I have found have died from apnea.  This is where our gratitude to our pulmonologist overflows.  We believe it is because of her aggressiveness in giving Dominic a trach and placing him on the vent that he survived.  That week we brought him home from the NICU, his apnea was getting much worse and quite frankly he shouldn't have survived.  He was turning blue and purple and once even grey.  We brought him back to the hospital where he had one very bad day on a regular floor where his oxygen went down into the teens (supposed to be 98-99%) before he was rushed to the ICU and given his trach shortly thereafter.  We know our pulmonologist's diligence and care saved his life.  Thank you, Dr. Dambro.

Remember this?  In the NICU, pre-trach.
Our one week at home.  Mary fell in love.
Back to the hospital... his first sleep study that determined he did in fact need a trach.

Dominic after receiving his trach and vent.  He was so little.  Our little crucified baby saint.
That same week, or maybe the week after... they are all running together... we received news that his home apnea monitor was running out of internal storage due to increased apnea.  Turns out it only alarms once the apnea reaches 20 seconds, but it starts recording at 16 seconds.  Dominic was having so many short apnea's (between 16 and 20 seconds) that the internal memory was filling up in about a week.  Upon finding this out we called the pulmonologist and scheduled a sleep study.  But in true Dominic form, he didn't want to wait.  After a routine sedation for a lumbar puncture and Botox (he fits in with the rich, bored old women now:), the anesthesiologist didn't feel comfortable sending him home, which earned him a weekend in the luxury resort also known as the children's hospital. (((On a side note, the anesthesiologist looked horrified as I described in a sort of laughing way how we are totally cool bagging him and performing life saving techniques and that it would be completely fine and safe to send him home- we could handle it!... he admitted him anyway)))  He had a sleep study on Monday which determined his apnea had grown worse and was now unsafe so he was placed back on the vent at night.

Mary again, ever the little momma, cuddling her baby bubba

The kids finding ways to entertain themselves in the hospital room

Dominic in his latest sleep study... I was lucky to catch a smile.  Nothing holds this kid down.

He was one agitated little guy... rough night for all.
So here we are... a new diagnosis that doesn't tell us much and progression of his apnea.  We are dealing with it all very differently: Mike in a very positive, faith-filled, in awe that he even survived pregnancy sort of way, me in my usual "I just need time" way, The boys in a "whatever God's will is" sort of way and Mary in a very excited way... because on the vent he can blow out birthday candles (we take the vent off and point it at the candle so he can "blow" it out).  Oh Mary.  In any case, God's holy will be done.

In and For Them,