What a Conversation!!

I had a co-worker tell me today that "I hope none of your kids ever have anything medically wrong with them", like her almost adults sons injury.  And to that I  nodded my head and replied "ya, I hope not".  The only thing going thru my head was how weird and dramatic she was being over an injury that is fixable with surgery. 
 
It wasn't until hours later as I was replaying in my memory how odd she is that I remembered tyler !  How could I have forgotten all that boy has put me thru mentally and emotionally.  Why did all that not come to me when she said "I hope nothing ever happens to your kid like this".  How did I not tell her my 2 year old came out with his maxilla bone sticking over his nose, he has logged over 15 hours of anesthesia time, he has completed 5 different surgeries, had feeding and breathing problems, not to mention,,, STILL DOES NOT SLEEP THRU THE NIGHT !!!  How did 2 years of nursing him to health totally slip my mind?  How I would love to go back and have that same conversation with her again.  Yes, dramatic mother of a almost adult child,, I have been thru hell and back with my third child, my only boy.  Born with a facial difference that we will be fighting to correct nearly his whole life.  Yes, I do get asked at public parks from other children why his nose is smooshed in.  Yep, this mama has been through the ringer with her son and I would sign up to do it again in a heartbeat.  Tyler has more personality and spunk in his little 2 year old body than she could ever imagine to possess.  He is a lover, fighter, and passionate about life.  He may never be able to blow bubbles, or play the trumpet, but I can tell you Tyler will take life head on and not sweat the small stuff,, cause he has already conquered more things than she could ever imagine doing!!!

Friends have told me during these 2 years that we were given Tyler  because we could handle all that will come with his differences.  I never believed it until today,,,

May 2013 Update on the Crazy Happenings of Tyler

WOW!!!  Its been so long since we have updated the blog!  I was reminded of it today when Tyler was featured in the Motts Childrens Hospital facebook page.  His story was told and our blog site was given!!  I am having writers remorse for not keeping it updated!  So,, here we go!!!  The good, the bad,, and the ugly!!!

Lets start with the good:  Tyler got a new set of tubes (2/2013),  which was a piece of cake.  Mommy was thankful for an easy, breezy surgery.  Tyler is now 26 months old.  His speech is amazing!  He has over 50 words and we have stopped counting.  He repeats us, even the bad words!!  He is currently attending speech therapy and progressing very nicely.  He is totally in line with his milestones, and probably a little further ahead than his sisters were at 26 months.  He uses sissors correctly, colors (all lefthanded!), motors around on riding toys, climbs ladders and slides.  He helps himself to snacks in the fridge.  He is nearly 100% potty trained, a full year before his sister Lexi was at this age! 

Now for the bad..... lets start with sleep!  He is still yet to sleep thru the night consistantly!  We are exhausted from his horrible habits!  He is still yet to drink from a straw, making clean drinking a challenge.  Tyler is a typical boy, loves toilets, water, dirt, throwing things, hitting, kicking.  He is a master of laying himself down on the floor to prove a point.  He is figuring out how to use his upper jaw teeth, and of course tasting skin with them!!!  He writes on walls with sharpies, dumps toy buckets just to see them fall, and eats dog food.  He has so many wonderful traits I can hardly  them all!!!

There isn't a day that goes by that he doesn't make us laugh by is crazy antics.  We argue everyday whether he is mom's boy or "my dad's" as he frequently answers.  He has this goofy personality that is the life of our house.  His newest love is tractors or trucks with removeable trailers, and in his eyes, they all should be compatible or let the fits begin!!!  He is loving the planting season around our rural home.  "Big Trucks" are everywhere!!!  He stands in the yard with his purple painted toe nails waving to all the equiptment driving down the roads or in the surrounding fields.  Tyler is forever keeping us on our toes and showing us how to enjoy every moment of life!!  Even a simple thing like taking a bath is very enjoyable,, especially if you are taking cup fulls of water and letting them flow all the way down to the basement!!!  We love our Tyler :)
 

 

 

remember

My Pledge to Tyler

As of today, I make this pledge to Tyler!  After Tyler is all settled into his first home, I WILL be making a visit.  I WILL stand in his kitchen and scream the only words my dementia mind will probably know, "EAT and HOT".  I WILL continue to repeatedly scream these, as someone is facing the counters actively making me something to eat.  I WILL continuously try to pull their pants down and stand under their legs while they are preparing my meal.  I WILL refuse any morsels offered to me while the meal is being cooking by throwing them across the room.  I WILL throw my milk cup too, if someone tries to hand it to me.  All the while I WILL still be screaming two loud words amongst cries that sound like Tarzan in the Etue jungle.  I WILL stand on the bottom drawer handle of the oven, in an attempt to retrieve food or burn my wrinkled skin.  If this doesn't work I WILL bang on the oven door.  When all these attempts don't make my food ready faster I WILL go to the table and rearrange all the chairs until I find one with my booster seat on it, I will then take the booster seat and toss it around the kitchen in my hungry rage.  I have forgotten to mention I WILL be doing this routine at 4:30 in the afternoon, one hour after I have been fed a snack.  Let me apologize now to any one else who may be living with Tyler when this routine begins, lets hope they are minutes away from serving my food, at which time I WILL run to my chair, wear my bib, and grin from ear to ear!!!

Tyler's Awesome Summer

(sorry, this post will still have no capitol letters, thanks to tylers key breaking skills,, a new computer is on the way!)

tyler has been having a great summer.  in the 10 weeks since his surgery he has been camping, swimming, biking, dune riding, and having a blast outside every chance he gets.  he is no longer our sweet little baby boy.  if there is a commotion going on in the house, you can guarentee that tyler is in the middle of it.  he is walking, well,, running now.  he is also saying about 10-15 words, which is right on/ almost ahead of his age.  we are finding his clefting is not holding him back from anything.  he refuses to be fed anymore, always has to use his own fork and spoon.  he has drank out of a straw at a resturant, but has failed to do it repeatedly.  i think the biggest milestone was met,, he is finally saying da-da.  which is making someone in the etue household very very happy!!!  ty thinks he is big enough to swim alone, ride a bike, and keep up with the big kids.  he does very well trying, but takes a tumble every now and then.  he came home from our last camping adventure with lots of scabs on his knees, ankles and nose.  war wounds that i am sure he will be wearing every summer from now on.  summer of 2012 has turned out to be a great version of busy fun, along with lots of growth from tyler ivan stinker etue!!!!

 

Mid-May update

Tyler update:  he is finally back to his old self after 14 grueling days!  i was growing weary that he was never going to perk up.  i never imagined he would take 14 days to play, smile, and enjoy life again.  for 2 weeks he was dazed and confused.  and it wasn't the drugs, cause we stopped them, i think it was just how he dealt with the pain and inconvience of it all.  we already know he has one small hole where the soft and hard palate meet.  the extent of the hole is unknown, as it will grow and change with time.  it may be something that never needs fixed, or needs fixed with his bone graft years from now.  as his speech develops, we will know more the severity of the hole.  i am not dissappointed though.  he was so severe going into the surgery, that i am just glad the hole palate is not flayed open.  a little hole i can mentally deal with.  he is still on restricted foods, but he is taking the foods he can have so meal times are pleasent again.  the sleeping is another issue, that we just take night by night.  he has good and bad nights with no reasons for either, so we just sleep when we can.  i am glad i took 1 month off of work, and he has a few more days to get sleeping better so mommy can function safely at work again!  here are some pixs of the kids in the last few days...

pitiful boy, during our hospital stay!!!

so i had to throw the dog one in there just for shits and giggles,, apparently she thought she was laying another easter egg for the kids to seek!!!

last surgery post for a long long while.... moving on to the camping season!!!!!

the surgery story.........

first off, let me just say,, there will be no capitalizations to this post as little tyler has broke both shift keys off my laptop!

here is the story from start to almost finished..... grab some coffee... its long.....

may 1st, 2012,,, we went to motts childrens hospital at 0930 in the morning for surgery.  tyler was less than thrilled the instant we arrived to our pre-op bay.  the volunteers tried bubbles, light up spin toys, and therapy dogs to distract him from all the pre-op procedures.  nothing was really hurting him, i think he was just sensing something was about to go down,, and boy was he right.  after talking with anesthesia we decided to give him a little versed to calm him down.  i was initally against this, but it did turn him into a happy guy.  by the time it was his turn to go in he was smiling for no apparent reason, i think derek and i could have used some of that medicine.  we both fought tears handing him over to the anesthologist.  we didn't speak a word until we were in the waiting area scoping out the rest of our day.  he went into surgery on time at about 1030.  at 1130 i recieved a call from the circulator stating he is done being prepped, vented and iv etc... and they were just starting the procedure. 

we continued to recieve updates about every 1 1/2 hours from the circulator basically stating everything was going well and they were continuing to work.  we got some lunch, chatted with an old rn friend who happened to be on her lunch break, and then settled into the waiting room, which is also the main lobby of the new hospital.  we did a lot of people watching in our 7 hour waiting time, as you can only imagine.  i am sure we looked pretty hilarious with our feet propped on the endtables, phones plugged in charging, laptop on, and magizines spread all over.  other families came and went, and there derek and i sat.  we did wander around a bit, saw the new indoor playground, which honestly was nothing special.  we also bought some shirt that said "hail to the little victors", this was somehow comforting to us while was waited.

as we sat, i was chatting with disney world travel agents online and derek was camper shopping....... odd behaviors,,, what can we say!  we have a disney trip already booked and a new camper sitting in our driveway... whatever!  the mda (head anesthologist) came down to find us to update us in person.  we were very thankful to see a familiar face who had been with our boy all morning.  although she was coming to tell us he had some oxygen problems while on the ventilator.  they had resolved with tube adjustments and incresased vent settings.  i am not sure if she was trying to comfort us, or give me the details i probably wanted, but then didn't really want to hear.  none the less, we were updated.

we finally saw on the tracking board he was flipped to the recovery room at about 6pm.  almost exactly dr buchmans prediction.  we were called to the pacu shortly after that.  seeing him for the first time was shocking for both derek and i.  ty was calm and sleeping, but swollen and looked miserable.  i forgot to warn derek about the possiblilty of him having a small tube in his nose just to keep his airway open and about his tongue being stitiched/taped to his cheek so if it fell to the back of this throat we had a way to open his airway,, opps.... so at the sight of the stitch and the nasal trumpet i had some explaining to do.

tyler was stirring and seemed comfortable.  i did hold him for a bit as he was waking up.  pretty soon we were packing up to head to our 12th floor room,, our penthouse.  i held tyler in the wheelchair as the two pacu nurses gathered all the equiptment to transfer him.  i kind of thought portable suction, oxygen sat monitor, ambu bag, in addition to oxygen tubing and iv stuff was a little over kill for a short elevator ride.  little did i know within minutes my boy would be blue and lifeless.  we arrived to the 12th floor, to our room.  i stood up to place him in the crib.  he immediately turned blue, and all his limbs stiffened.  his jaw was locked and he was no longer alert.  i said to the 4 staff in the room "he's blue, we need to bag him now".  i say the phrase "we need to bag him" frequently in my job, and it just flowed out of my mouth and i was in rn mode.  joe, the angel from pacu, did a jaw thrust to open is airway and with a smooth movement started to bag my boy.  it took just a few breaths, and he came around.  he was still very calm, just laid there, but at least he was pink and breathing.  joe watched him for a few minutes and decided to take tyler back to pacu so the anesthesia department could watch him better.  it is pushing 9pm when we made our way back to the pacu dept.  we were the only patient there, and their last of the day.  we had about six pacu nurses and a crna around tylers bed for hours.  tyler had several incidents of oxygen desaturations as we waited in pacu to see how he would respond to being given more time for the anesthesia to wear off.  at this point he was working hard to breath and requiring constant oxygen.  it was determined we would benefit from constant monitoring in picu.  the mom and the nurse in me totally agreed.  so then we waited in pacu while another family was moved out to the general floor and tylers room was prepared for him.  all in all we were in pacu for 7 hours.  7 hours in surgery and 7 hours in pacu.  what a day.

as we made our way to pacu, the residents were questioning tyler having a febrile seizure versus a obstructive/hypoxic episode.  he did have a fever of 103.7, but i was having a hard time considering a seizure.  the more i look back on the situation, i think that was the case.  that god it was the shortest seizure i have ever witnessed.  he was very sleepy and out of it for hours after, i was unable to get him awake with voice and touch.  so chances are he was having a post-ictal state.  anyhow, we settled into our icu room.  tyler was more and more fussy, which was good and bad.  he was comforted by holding.  he was being given oral pain meds which we didn't see any difference in his behaviors.  he was moaning with each breath and jumping every few minutes.  we struggled with this until 5am.  finally we tried some morphine and he settled to sleep in his crib for over an hour.  this was relief for my lap, but of course everytime i shut my eyes i had visions of the events of our day.  i was awaiting the rise of the sun, and a new day.

the next morning, tyler was still pretty much the same, requiring constant oxygen.  the attendings and residents made their rounds and had a mini conference outside our room, just like on greys anatomy.  i was invited out to the pow-wow by the resident who knew i was a nurse.  mid-way thru her history and physical speel, the attending left the circle and headed for tyler.  he gently talked and examined him.  i followed him to the crib.  he was so nice and understanding to our situation.  after he was done cooing to tyler, he turned to me, put his arm around me and said "you know this happened because u are a nurse, right" ?  i said "i have known that since the 33 week ultrasound".  he smiled and wandered to the next room.  we pretty much hung out the rest of the day.  i was able to get a spot at the inhouse ronald mcdonald house.  it was on the same floor as the icu.  i was able to get a shower and a nap in a quiet place.  derek stayed with tyler, holding him and dosing with him.  finally got tyler comfortable off morphine and switched to a stronger oral medicine.  he was taking juice sparingly.  by 6is on may 2nd, we were able to get him off his oxygen and off the iv fluids too.  he was sleeping at intervals with the pain med.  derek had bought the toddler chair up to his room, so tyler was pretty content sitting in it, vibrating his little butt.

by the morning of may 3rd.  tyler was completely done with this whole experience.  he was hitting us, kicking, turning circles like an alligator.  he managed to clap his hand and arm board in frustration to a nurse trying to get vital signs.  unfortunately i knew this fistyness was my boy, my old boy.  it made me smile a bit that he was becoming less passive.  he was very observant about who was in and out of his room, or who was in the hallways.  i am sure he was planning his escape route out of wolverine land.  when the doctors rounded on thurs morning both specialities, plastics and icu teams, thought we were good to be discharged sometime in the afternoon.  i agreed and began working on getting him to drink.  he had only a mear ounce in him at 10 ish when the nurse recieved a call from the residents saying he could go at noonish.  yay,, she didn't have to tell me twice to start packing.  tyler wasn't really eating enough to leave, but i thought things would go smoother at home.  besides his sisters were tugging hard at my heart, by saying how much they wanted me home.  i couldn't take it much longer.  by 1230 tyler had been medicated for the ride home and we loaded him up.  poor daddy had to wait a few minutes to get us to the car though when we were stopped by two more rn friends who happened to be in the lobby of mott's.  good to see familiar faces during our journey.  also, our last picu nurse was an ida grad and her kids go to ida.  i am sure we will see her around our small town at some point.  what a small world, but we made connections with many people while we were hospitalized and it helped ease our pains.

first night home was interesting.  to sum it up, tyler was spitting meds, barely taking drops of liquads...... but he slept for a bit in his bed, and the rest of the night in his chair with me on the couch next to him.

he turned a corner this morning.  he has had a few bites of yogurt and baby food squash.  he has had a few ounces of milk.  he has napped, and is now exploring the house.  he is very wobbly on his feet but determined to pull up to the tables and windows to see the neighbors dog.  he is playing with the phone, remote and his toys.  he gave me one little grin so far, and i will take it.  i am happy to see him crawling and pulling to stand.  he wasn't trying any of this in the hospital.  i think just in the last hour as i am typing, things are looking better.  he has reached for what little keys i have left on my laptop more than once, thats my boy.

despite our one little blue/seizure episode, our family has nothing bad to say about our stay at motts.  we didn't have a choice in having this surgery and i think it went as good as it could.  tylers cleft was very extensive and his recovery could have been worse.  we were give excellent care.  from the nurses, to the doctors, to the techs and support staff, that motts is run like a well oiled machine.  everyone doing their part to make the complete picture.  it helps to that the new facility is top notch, clean and sleek.  never once did i hear any staff complain or bad mouth another dept.  it was all about tyler's needs.  tyler was probably the least critical patient in that icu, but it felt like we were the most important.  we saw babies on vents, multiple machines, and going thru horrific times.  we know we are blessed with tyler's cleft issues.  they are short lived, and a lot of those families were "living" at mott's trying to save their children.  special things go on in that building everyday i am sure of it, i have experienced it. 

 i am sure there are more details.. but at the current time, this is all i can remember, enough right??

tyler just knocked the lamp off the endtable,, my boy is back,,, got to go !!!!!

525,600 Minutes

One year,, seriously??  One year ago, only knowing the unknown, and presto.... Tyler Ivan has arrived.  Those moments of meeting him are still fresh in my mind.  I still remember the tears, the fears.  But as I am remembering the last 525,600 minutes of my life, I have the happiest boy climbing up my leg screaming Mama!!  What a year, what a ride!  We have made it through appointments, a surgery, feeding and vomiting issues, losing teeth, and now,,, playing in toilets, escaping out the back door, clearing drawers of clothes or dishes, splashing in dog bowls, spitting food, removing registers from the floors, and most of all loving this crazy boy we were given.  And all boy he is, loves riding power wheels and pushes cars around our kitchen table endlessly.  Tonight we put him on a toddler size four-wheeler to see what he would do.  He pushed the button and went across the yard, grinning all the way.  The girls started proficiently riding that when they were in the 2's!  Although some of his genetics were a little off kilter, his manly genes are certainly in the right place!
Tyler had an excellent birthday today, and he doesn't even realize his actual party isn't until Saturday.  It was 85 degrees in March.  I wish Tyler would remember this birthday cause I don't think he will have a pool party every year in March. 

We played outside in the pool and rode the power wheels until the batteries were dead.  Our family came over for dinner to celebrate the year and the beautiful weather. 

We wouldn't trade one moment we have had with this kid.  He was given to us for a reason, and we are embracing every moment of him.  We have come over hurdles that seemed impossible at the time and yet as a family we have risen above.  We are not clear for a life of fun and games yet, but we will do everything possible to make the next battles bearable.  And Tyler with all his charm and strength will rise above.  He doesn't know of our family rule yet, one surgery=one vacation.  But we will continue to follow the rules and let him in on the details when he is bigger.  Can't wait to see what the future has in store for him, so far he has picked 2 careers, plumber and doorman..... but those might just be hobbies for now........

Happy 1st Birthday little Tyler man!!!!