Thursday, April 30, 2015

Offensive Linemen not doing stupid stuff while singing

Two days to go - I think Alex knows the hours actually but I am saying two days to go.

Let's be clear - I am not an Offensive Lineman
Alex's PT doesn't want him to walk, she wants him to walk like everyone else in the end which means every step he takes now has to be the right mechanics even if it doesn't get him far.  Alex has to WORK (and I love it!).  PT introduced a glute and ab workout that I am not sure most adults could do to be honest.  It was intense, it involved medicine balls, yoga balls and balance.  There were leg lifts, out and backs, squats, and absolutely no bunny rabbit hopping on his left leg.  Oh yes, the words 'Don't be a bunny rabbit' came out so from now on, I might call him Hopper.

We already knew about the leg brace Alex would be but that is nothing compared to what was added on Wednesday.  The PT brought Alex out a big black brace, to which he said - that is an O Lineman brace and I am not an O Lineman.  At 127ish pounds, Alex could never be mistaken for an O Lineman - just saying, but he now has the knee hardware.  The reason for this is so he doesn't snap his knee back when working on his leg strength causing more damage in the long run.  With this brace, Alex can get up and down stairs and walk much easier.  And, come on, it kind of looks neat as he is kind of robotic now.

Don't do stupid stuff list
Part of the therapy schedule included Recreational Therapy.  This is the fun part of therapy, literally, they play games, that (of course) also are working on skills to be integrated in the world and not be 100% focused on the next step you have to take.  As Alex is only in BIR for tow more days of meetings, today's TR was the delivery of the Safety List.  What is the Safety List you ask?  It is the Don't be a Dumb Ass or do Stupid Stuff list.  We have decided (the adults anyway) that this list should be used for every teenage boy, or girl for that matter, as it is just common sense.  It took a half hour to go through this list but 25 minutes of it was Alex joking with the therapy student as she was adorable and closer in his age to him than me.

It's the Fun - with a musical spin

  • "Ain't that a kick in the head"  Played by our awesome announcer as I walked up to the field on Tuesday night's game.  It was perfect timing, and I think it was planned as he winked at Mom as he played it. HA!

  • Sweet Caroline is always sung in the middle of the 5th inning by Jesuit Rangers - possibly to taunt the other team's pitcher who is warming up.  Alex heard it through the radio last week but there wasn't a broadcast this week so I ran down to hold up the phone for him.  When we told the boys to sing louder, they tried and the DH said - "I just don't have the pipes to carry the whole team!" with a sly smile.  Apparently not true as it had everyone laughing...


  • In baseball, you get to pick your walk up song.  We have decided Alex's should be...

Wednesday, April 29, 2015

Elephants are my favorite animal but right now, it's all about the duck and the pig

Food, therapy, food, HE IS GOING HOME FRIDAY FOR OUTPATIENT THERAPY meeting, therapy, family, food.  Did you get the important part?

Not just Sudoku, but 3D Sudoku with colors?  I am out.
OT teaches you how to function in the world independently.  Okay, that is a very simplified way of putting that so please don't get offended if you are an OT and reading this.  Clearly this blog is through the eyes of two people how really have no expertise in PT or OT unless you are talking about playing time and overtime. But I digress.

His lovely OT had him doing a 3D Sudoku that was with colors and different block shapes.  This had to be done in 30 minutes and the OT had never seen anyone finish it before - Alex came with mere blocks of solving the puzzle and asked if he could finish it in his afternoon session.  It is moments like this that I realize he might not actually be my kid (as I would have just made pretty pictures) and that I am reminded how lucky we are that his cognitive function wasn't effected by this unfortunately accident.  He says he almost finished it that after by the way, so I wonder if they will work on it today....

So PT did not include the big stick but did include stairs and squats.  He told me he could hear his Strength and Conditioning Coach in the back of his head yelling at 'lazy slackers' about the right way to do squats.  He was doing great considering he has to put all his energy into not snapping back or hyper extending his knee.  Butt out, chest up - better than I would do I assure you!   He also learned the freaky feeling of E-stim therapy which is electrical stimulation.  This doesn't hurt but does try to wake up the muscles he needs to fire.  Bill offered to hook one up for him at home but somehow I think that wouldn't be the same thing.

So there is this big game...
The meeting with the doctors went better than we could have all hoped for - even Alex with his high standards.  We have the best team of doctors that are very supportive of Alex and his journey.  They gave him the good news that he could be discharged and home on Saturday morning.  After they told us the other details on what that meant, I decided (as a sometimes protective mama bear - a right that I deserve) to see what I could do as I saw the kid's spirit crush a little when he realized he would miss the last regular season home game and senior night.  I asked if we could jail break him Friday night for the game if we promised to be super careful and bring him right back.  This is when his Doctor became the super hero of the hour - she said 'Let's just discharge him Friday morning then! No reason to miss another game and I think you have earned it!'  Okay, I have seen a lot of joy and pain, happiness and frustration out of Alex (and all of us to be honest) this week but that moment?  His eyes sparkled like he was just told he was taking of Disney but wouldn't have to work, just live in the park and have fun for the rest of his days.  That moment Alex knew all his hard work had paid off and convinced him to work even harder as he KNOWS he will continue to beat expectations and be just another kid walking down the hall in no time.    He went into his next PT session informing me that he was going to work even harder as he knew he had drops left in the tank.  I have always been a person who appreciates the small things in life and was raised as one who meets ever challenge as an adventure but after seeing Alex go through this with the grace he has shown at 17?  Well that just cements that I will continue to live my life that way!

The Boss - and the Boss ladies who delivered
The other day, Saturday (in what seems like a year or two ago), I brought Alex The Boss from Ruthie's Food Truck and tweeted a picture with a caption about how The Boss sandwich was going to help him kick ass in therapy.  To my surprise, the amazing ladies at Ruthie's reached out to me and let me know they were praying for Alex and would love to come see him!  HOLY COW!!!!  I mean HOLY PIG!!!  So yesterday, after therapy and the excitement of our meeting, the two lovely ladies, Robin & Kelly came and met Alex in his room!!! They brought a bag of goodies - yes, including free sandwich coupons and a hat - and talked with him about his experience and how he was their Man of the Month.  I cannot even explain to you how amazing this is - the owners of our favorite food truck took time out of their day to come see Alex and just talk with him!  They passed along prayers and hugs from all their drivers.  They sat with him in the bed and talked about the duck.  They laughed with all of us and brought more sunshine into rehab.  They also brought us some amazing Live Love Pop! popcorn as the owner had heard Alex's story (she offices next door to Ruthie's) and was not only praying for him but also wanted him to have some good snacks!  I cannot even tell you how blessed we are as a family.  Not only do we have family and friends praying for us, but complete strangers are not only praying but are embracing Alex and supporting him in his journey!  Just amazing!!!



It's the fun

  • Bill "I am sure I can lift us on this, put on the belt and I will try it out."  Oh yes, there is a lift and lots of buttons in this new room and someone wants to try it out very badly...
  • Nurse "I like this room, I only have to worry if I come in and there isn't laughter!"  We laugh in here, a lot. At each other, with each other, it doesn't matter - we just laugh
  • Erin "There is a big game Friday night..."  Doctor  "We don't do therapy on Friday night anyway so let's just switch it to Friday.  We have to have our priorities and the big game is a big one!"  She came in later and talked to just Bill & I and shared that Alex's continued involvement with his teams over the past week and a half has only helped drive his therapy goals and could only help more.
  • Buddy "I got something to remind you what to do when you see a ball coming your way...it's a duck"  This was last week but bears repeating as this duck is now a fixture in room 300 and a comforting snuggle for adults and kids alike when needed
  • OT "I want a cool pink therapy belt - ours our so blah!"  Talking about the once hated and now love pink PT belt that Alex wears just in case someone needs to grab him and stop a fall
  • Chocolate shakes, KFC fried chicken bowls and Ruthie's - with food like that, how can a teenage boy not succeed?  He is going to be so sad when he realizes I will be cooking again when we get home...



Tuesday, April 28, 2015

But it's a button - it is supposed to be touched

Bill:  Time to put on gloves and start touching stuff.
Alex:  I swear, stop pressing buttons.  You are going to break something.
Bill: I just want to press the buttons to see the menu.
Alex:  Stop!
Bill:  I don't want to stop.  I want to see what happens when I press them.
Alex:  Stop!
Bill:  There is a lift!  It needs to work!
Nurse:  You pressed the call button?
Alex:  DARN IT BILL!!! YOU PRESSED THE CALL BUTTON
Nurse:  When you press a the button, it lights up and I have to come running.
Nurse:  Why are you pressing buttons?
Bill:  Because it needs to work!
Alex:  We need him in a full straight jacket.  Zip up bed and shackles.
Nurse:  Oh I like you guys.
Bill:  Which one of y'all gets lifted?  Someone is going up.  That's it, I am putting on the belt.
Alex: I don't need my belt on your ass.  Take it off.
Bill:  Get up and make me.
Alex:  Oh I will be getting you, leave the buttons alone.

Seriously, laughter is the best medicine.  I am very healthy.




Dancing the the rain with a big stick and the world on your side.

Suitcases might not be a bag with a zipper, handle and wheels.  Today, Alex's suitcase was a rolling  bed side table and a hospital bed as he moved from a semi-private (and really small) room to a private room (Room 300) with his very own bathroom and room to actually move around.  Yes, we sang 'movin' on up' while moving...

Speak Softly and carry a big stick
Rehab is in full force and Alex got a massive walking stick to move around with instead of the walker.   We are told this is kinda big deal (hee hee hee) as it means progress!!!  After a morning of evaluations (again) and block puzzles that I know I couldn't solve.  No, really, you probably couldn't either as they involve looking at a picture and using the preset shapes to copy the picture.  This made my head hurt just watching let alone typing it again.  Anyway - he, of course, did very well at this as he has an oddly logical brain (despite the fact that he is my kid).  His OT tech is going to graduate him to a video game this week.  Of course he is because teenage boys need that, right?  Uh huh, sure they do Mr. not much older than my son OT guy.  Of course, if it works, I am all for it but still I feel like bribes are happening.

After lunch, Alex got to experience PT - the real deal.  Of course, Jesuit men never go through journeys alone, even in the examines they are aware that many others are meditating with them so while the journey may be on their own literally, they are not alone.  Alex had a few supporters with him for this first hour.  To his surprise, coaches from his sports and more showed up to surprise him and take him down to therapy.  No really, they planned it, left school and rearranged schedules to surprise Alex.  I know I am a broken record but the support we have received from friends, family and our Jesuit community - Jesuit family - has been amazing.  There aren't words and clearly Alex & I are really good at using words.  I am not ashamed to say I let the nurse turn off the lights and close the blinds and I slept for best 45 minutes since last Sunday as I knew Alex was at PT with a group who loved him and not going through a minute alone.  And those guys?  Well, they can heckle and support with the best of them and that was good enough for me.  In Alex's words - "It motivated me and was awesome.  I got to show them I was doing great and trying really hard and would be back in no time."    The PT team on the 2nd floor - the gym - was shocked and moved by the show of support.  According to our Saturday PT who was down there, as soon as we saw the Jesuit shirts we knew this kid had more support and couldn't help but succeed.  Just awesome.

from left to right - Coach Jones, Coach Weeks, Coach Hickman, Coach Hill, Coach Ackels, Coach Gavin & Coach Alexander.  And our lucky charm in the middle of course, with his big stick.
Dancing in the rain - it's a Reilly thing
For the first time, I didn't give Alex a choice about going outside.  After laughing with Grandma & Pop Pop about the bed alarm being put on again - yes, despite the note on his board and order for no alarm in his chart it was put on again and we (well, not Alex) found this to be hilarious - trying to help with the count back from 100 test and doing it wrong - I decided it was time for Alex to go outside.  This was the first time since last Monday (roughly 6:08pm).  I wheeled him out to the patio and we sat and talked.  Then the emotions came out of Alex.  He didn't cry, he ranted.  He is pissed that he is in rehab; pissed that he is hurt and can't walk; pissed that he wasn't there to celebrate with his team for their district clinch and Coach Jones' 300th win; pissed that he missed cheering for the Tall One's state rugby championship.  Alex is pissed he has to use a wheelchair or a big stick.  He is angry and he finally got it all out and you know what?  I am proud of him for that too.  Since last Monday, I know he has been tired and frustrated.  I know he has been disappointed.  He kept it all to himself and it all came out at once and that is a GREAT show of emotion.  That kind of honesty with himself and me will give him the strength to go on during those bad times, and we all have bad times.  It was at the end of the rant that light rain drops came down and I decided (he thinks I am crazy anyway) that it was time for us to dance in the rain so we did.  We wheeled him around in circles and back and forth in the light rain and danced together.  It needed to happen - sometimes you just dance it out.  I will think back on that moment with peace the rest of my life and hope someday he does too.  Once back inside Alex decided that I need cognitive testing of my own as clearly, I am crazy and you know what?  I am good with that.

Whataburger - it's a southern thing
The Tall One came down after the dinner tray was delivered bringing the golden meal to Alex as the food?  Well, it's just bad here.  No way to get around that - just awful.  Bill & I left so the boys could do their thing only to come back with the Tall One camped out in the bed going through the benefits of this adventure with Alex.  The top three?

  1. Handicapped placard - Ideal parking for Alex & the Tall One is a big deal
  2. Extra time for school - it occurred to the boys that oh yeah, school still exists but Alex doesn't have to stress about it...
  3. Junk food - girls get flowers in the hospital, boys get Tiff's treats and candy.
Massage leg things - the pads they put on your legs to enhance circulation made the list for a minute until the Tall One tried them on his own, then those got taken off the list and it was decided Alex also needs a massage chair.

It's the fun

  • Alex "Um, that's not counting back by 7 - that is in fact wrong.  And they are testing me for brain issues?"  Pop Pop is our math guy but even the math guy can make a mistake, or two.
  • Bill "What does this button do?  Or this button?  I have gloves on so I am allowed to touch all the buttons"  Bill likes the buttons on the bed (and putting on the gloves by the door) so much so that he pushes them, a lot.  Good news is that Alex seems to be gaining .1 pounds an hour per the bed scale...
  • Erin "Let's dance it out" Alex "No." Erin "Um, I am the one pushing you so I win."  Alex "Aren't you supposed to be nice to me? Oh wait, if y'all stop teasing me I will know I am going to die."  As a family, we tease, it is how we show we love and if we stop?  Oh hell, just head to the light folks.
  • Coaches "Time for the heckling man!  Don't think we are going to let you slide on this PT session!"  Best medicine ever.
  • Grandma "They put the bed alarm on again? BWHAHAHAHAHA"  We all seemed to find this hilarious.  Well, not Alex, he was rather irritated but that just made it funnier for us...

Monday, April 27, 2015

Toes, Bikes & the Cup

Sunday - day of rest unless you are Alex.  Although he has decided that it was boring here too as he only had one 45 minute session of physical therapy and apparently that is not enough when you are Alex.

Sunday - Pun day
Two of Alex's buddy showed up early Sunday morning.  They were a shock of energy (Alex's words exactly) that kick started the day.  A couple hours of discussion on important things like sports and then came the pun war.  Thus the pun entry from yesterday.  It has me in stitches and certainly lifted Alex's spirits.  Then the best part of our week happened.  Unlike most visits where the kids don't talk about Alex's injury and avoid touching him, these two had no such hang ups.  One of them decided it was time for Alex to move his foot so he grabbed his Achilles tendon and OH MY GOSH HIS TOES MOVED.  We were all cheering and yelling, probably waking the entire floor but HIS TOES MOVED!!! Now Alex seems to think this doesn't count because he didn't do it himself but Alex is wrong.  He moved his toes and for that?  We celebrate.  Later at the rugby state tourney, I was greeted many times with "Alex moved his toes! YEAH!"  See?  Good news travels fast in our village.

Sunday - Fun day, even in therapy
Sunday is the light day at the house of Rehab located on the second floor of Baylor Rehab.  Or so Ale thought.  He did the sit down bike (from his wheelchair) with resistance for 25 minutes.  He went 5.486 miles and claims he was cheating by pushing and pulling with his left leg.  Silly boy, like the PT - despite the fact that she was a student - does he not realize they have seen it all?  With resistance as high as it was, there is no way to cheat!  Following his finish down the Champs Elysees (he was racing in the Tour de France), he got to do leg lifts with both legs.  Always an overachiever when it is remotely sports related, he happily did the 5 extra on each leg.  It wasn't until he got back to his room that he realized how exhausting PT, even on light Sunday Funday, can be when you are learning how to walk.

Let's eat cereal from the cup!
In the afternoon, Bill & I went back to Jesuit to cheer Billy and the Jesuit Rugby team in the state championship.  AND THEY WON!!!!!!  We are so proud of these boys, our senior leaves Jesuit a state champ with his rugby family - so awesome.  Of course, the cup has to be a thing of fun so they boys talked about bringing it to school and eating cereal out of it.  They can't drink beer after all ;)

It's the fun

  • Buddy "You moved really well!"  Alex "I had a butt cramp."  Ahh, teenage honesty
  • Buddies "You moved your toes!!!!" Alex "You moved my toes" Buddies "You are wrong and can't chase us so we are right and you are wrong."  Visitors - some of the best therapy
  • Alex "Hey state champ!" answering the phone when the Tall One called to rehash the game and talk basketball playoffs.  Not sure who was more proud, Alex or the Tall One!
  • Pun war  - anyone who knows these boys have experienced the laugh until you *almost* pee experience of this pun war
  • Me "Mom is that you?"  Yes, you run into people in the bathroom at rehab if you are a person who notices shoes.
  • Alex "If they give me tofu, I will hurt someone." followed by "This is ketchup paste, NOT pasta sauce. "  The food here isn't quite what it was at the last hospital and he'll eat anything (except for tofu and ketchup paste!)



Sunday, April 26, 2015

Rush Hour - it's how he feels about walking and the game he is playing

They say you truly don't understand Occupational Therapy (OT) versus Physical Therapy (PT) until you experience it.  Well now, we certainly do!

Evaluations...like test only easier.  
OT & PT evaluations started for Alex today.  Of course he faced them with the dedication and drive we have seen all week.  OT was playing Rush Hour.  Do you remember what Rush Hour is?  It is a car puzzle game where you have to get the red car out of the lot.  It is a logic puzzle that sounds easy until you have to do it standing up with a leg you can't control and you pick the hardest level card because you are convinced you can work it out.  All of your focus is on the strength in your leg making the game more challenging and that is exactly the point.  Alex took one break to relax and sit down then right back at it until the car was out.

PT was all about ballet.  Okay, not really but kind of and that makes me giggle so ballet it is.  He worked with parallel bars to balance and reallocate energy to the right leg.  As he can't engage his right leg, ankle or foot yet, it is a lot harder than it sounds.  The PT would put a stair under him so that he would rest his leg up and have to balance (with her help and the omnipresent pink PT belt firmly in place) on his right leg.  She would then try to push him out of the position.  I got to see this first hand as I will soon be 'certified' to be able to help him move around without a nurse/PT present using the belt.  Following his ballerina movements (it just makes me laugh to tell him that), he walked around the PT floor with the help of his walker, an orthotic that stabilizes his foot as he still can't control the ankle or foot.  He took a small break when he told the PT he was recognizing that he kicked his foot out and got lazy.  This is BIG as he felt he was doing it wrong.

Time to pop wheelies
Because of the drive and dedication Alex has shown towards his recovery, they have decided that he can go anywhere he wants on the property in his wheelchair with friends or family.  He is working hard and they are recognizing it!  There is a great patio off of PT...just saying.  His buddies have decided there will be wheelchair races ala Scrubs.  Hey - if it keeps him motivated, I bet he could get away with it!

Moooo.....
Jesuit Rugby was playing in the first round of the playoffs yesterday so I was back and forth between rehab and Jesuit.  In fact, the only regular event we have had in this whole week is the fact that we are spending a lot of time at Jesuit :).  Coming back from the amazing rugby victory, I decided average fast food just wouldn't do for lunch so off to food trucks I went.  Actually, I was cutting through down town and had to call my food guru to find out where Klyde Warren Park was but I digress.  Nothing less that Ruthie's The Boss would do to motivate success today.  Actually, it was because - months ago - Alex was telling me about this AMAZING sandwich that he got from some truck with a pig on it and I told him about the AMAZING one I had and they ended up being the same place - Ruthie's Food Truck.  He might not admit it, but all his good stuff?  He gets that from me of course (just go with it - give me this one please), Anyway - I got us The Boss (although I really want to try the grilled cheese so that might happen later this week).  When I got to the room, some of his baseball guys were there so of course I offered them a bite.  No one took me up on it (they preferred the cookies) so I promised - if you guys win out the season (2 games to go) - Ruthie's sandwiches for each of you.  And they better hold me to it because I will deliver.

Back to the field - not as easy as I thought it would be
Alex asked me to go the baseball game and support his guys so, of course, I couldn't let him down.  I am not going to lie - walking back to that field wasn't easy knowing the last time he was on it this adventure started.  There was a high puncture the sky kind of pop fly to shallow center.  I didn't like watching it and kept saying - catch it. don't let it hit you. catch it right now.  The home runs flew in the game - these kids stepped up and finished that 13-1 victory in 5 innings.  It was the district clincher and win #300 for his coach.  The team celebrated with a picture on the field, silly Jesuit posed letters (by humans - yup you can laugh now), and videos.  I had to get out of the stands and hide for a minute behind my very dark sunglasses.  He should have been there celebrating.  He should have been there in the dog pile, in the pictures, on the letters in the line up.  I know he wanted to be there - and was there in spirit for sure.  Moment of honesty people - yes, we are strong when our kids need us to be, that is what parents do.  However, at that moment?  At that moment I was ready to quit being strong and cry. I was hurt for my kid that he was missing out.  Then I got over it because it was time to celebrate on the field with the parents and Alex would be there soon enough.  So I went out and took a pic to send to the kid.  In the words of Tom Hanks - there is no crying in baseball.

Zzzzzs
PT is hard. Alex thinks he isn't doing much work and gets angry that he us worn out.  That is crazy but I get it.  He is a 17 year old boy who thinks he is invincible and the super hero cape isn't helping him fly right now.  This mental trial is something he is going to have to work through and is part of the journey.  He is tired but gets jazzed up by people - not seeing people and being reminded of all those pulling for him to get out is his kryptonite.  The motor skills issue isn't.

Moment of thanks
A moment isn't enough, but that is what we have right now so let us take it.  Thank you to everyone who has visited, called, texted, tweeted, FBd, SnapChatted, instagrammed, taken selfies etc.  Thanks for the hugs when you see us outside of the building or for the non-judgement shoulder when we have a weak moment or chink in the armor.  Thanks for taking time to walk up with a joke about the situation or a tender word - both are equally as helpful.  This week our family has lived a year in a week (thanks for the perfect way of putting that Mom) and it is effecting all of us from the dogs, to the kids, to the adults.  I have always said it takes a village and right now?  Wow - this village is big and going way above and beyond.

It's the fun

  • Coach "He hit another homer after visiting Alex and you know us baseball superstition guys.  Maybe Alex should stay a little further into the playoffs, you know he respects the baseball gods!"  And you know what?  He does and if it was a sure thing that Jesuit would win state if he was in a hospital room, he would move in for sure!
  • Buddy "I got into that cookie cake.  I used to get them and put them in my passenger seat."  It is vital to have snacks in a boy room.  And apparently, the chocolate chip variety of snacks are the the key.
  • Buddy "You don't mess with the Jesuit family.  We are the Jesuit Mafia and no one can stop us."  Never has that been more true than this week and they have risen to the occasion.
  • Alex "We are having a party in here - I got half the team and more friends. Gotta go."  When I called seeing if I needed to come down before my HoF dinner for a spirit lift.  He didn't even want to talk to me...sigh and yeah all at once.  Okay, much more yeah than sigh!
  • Seeing all his different friends interact...at first, they don't know what to think with each other but after 2 minutes?  It's like they all have known each other all their lives and Alex is throwing a big dorm room party and not stuck in bed.
  • Alex "I have to deal with my own emotional bullshit so I moved to my chair, turned on hockey and am chilling." after a rough night of 'I just want to move my hamstrings so they can fire everything else up' in response to my question if I needed to come back down.  This might not seem funny, but to us?  It very much is.  Game on my friends.  Game on.

Teenage boys and their puns...an important part of therapy!

J:  I was going lay puns on you...Actually I just don't have the balls #sorrynotsorry
I knew that pun would be a hit
Are you looking for more puns?  I just have to let them fly.
S:  They might be a home run with him, but you are striking out with me.
J:  Man that was out of left field
I think it is good to have base for them or they are foul
A:  You are just having a ball
J:  I might take a short stop, but  will always have an out
S:  It's a walk in the park
J:  There are mounds of puns in this park
What a relief - I came up with another one
S:  You have to slug on through
At this point, they are a dime (ond) a dozen
J:  That was a swing and a miss
S:  I was shut out.


Speed limits, SC fails and showers

Another suitcase and another door for the family yesterday.  Yesterday Alex was moved from Presby Dallas - the Trauma Floor - to Baylor Dallas Rehab, the best rehab facility in Dallas according to the parking lot flags.  Acute care was over!  In theory, that means a more comfortable night to sleep as they don't check to make sure you are breathing every two minutes however, that was not the case.  We have now experienced the first night of horrible sleep which should make therapy an interesting event today for the Kiddo.

He looks fine - smiling and all...most times anyway
There is something about being hurt like Alex is that is odd.  I am not sure if odd is the right word but it is the one I am using as I can't think of another one.  Anyway, Alex looks fine if he is sitting in a chair. He looks fine if sitting in the hospital bed too other than the fact that he is in a bed with rails (although he doesn't mind that at all as he rested his head up against them - teenage boys can get comfy anywhere if it means sleep).  It is only when Alex tries to stand up that it is very evident something is wrong.  That is sometimes offsetting for people but all you have to do is talk to him to know that this kid isn't going to quit no matter how hard standing up or walking is.  When the three docs who are in charge of him checked us in, they were very impressed with his drive and really how far he has already progressed in a week.  The cognitive test was interesting, you try to count back from 100 by 7s and see how far you get before you invent new math equations.  Maybe that is where this New Math everyone is talking about comes from?  Moving on, the check-in was good.  They gave him a lot of hope that maybe he may only be here a week which would be AWESOME as his dogs really miss him.  No - really, they leave presents to remind him how much.  Wait, no that can't be right.  Back to the tests, he got a charlie horse (oh yes, that angered the bear so we poked it with a stick of course - that is what PT is all about) in the left side to which he discovered first hand how much he had been compensating on his left for his lack of usage on the right.  Oops.  Oh and Dodgeball!  No - they didn't throw red balls at Alex at a speed that could cause another fracture, rather they asked him to name all the words he could that started with a D in 30 seconds.  No joke, the Doctor (not the residents, the actual Doctor) and I had to stop ourselves from laughing out loud - it would blow the test - when he said 'Dodge, Duck, Dive, Dodge'.  Even better?  He actually forgot to say the word dodgeball, and yes, she called him out on it making it even more funny for me.  It now occurs to me he also forgot to say the word doctor....

It is Saturday - Sports Center says no work until Monday...wrong again guys
As it is Saturday morning, the SC guys said celebrate - no work.  Wrong dudes.  Alex starts the real work today - PT and OT for the win.  Alex has convinced himself that small goals aren't needed.  When he is asked what his small goal is for today, he responds "I want to walk."  Well clearly, you want to walk but we like to have little goals...Reillys aren't really big on little goals.  As Alex reminded us that first night - we GO BIG OR GO HOME and oh man, he is going big.  PT was a huge success so he got clearance to go anywhere he wants in his wheelchair.  This should be interesting when his buddies come by this week...

I went the speed limit on 75 
While the rehab people thought we could transport Alex ourselves, that was a big no (I didn't want to drive him anyway - hello?!?!? skull fracture!!)   I can now honestly say I have driven the speed limit on 75 - the Dallas Autobahn.  I have only done that because I was following my son who was in a wheelchair transport.  This should not happen again - the having to follow my son in a wheelchair transport or going the speed limit on 75.  Yes, I might have cried-ish on this little trip.

It's the fun

  • Alex "At two in the damned morning the bed alarm when off!  I have to lift myself to roll over and you set a bed alarm on me?  Seriously?  Where am I going to go exactly?"  Needless to say, they haven't turned the bed alarm for Alex again.  But it could be a fun prank...
  • PCT "Do you want a shower?  Because I can make that happen and I have manly smelling stuff and you can take as long as you want.  Nothing like a shower."  Alex "You are my new favorite."  Showers are second only to his buddies visiting.
  • Tall One "Hand me the Tiff's Treats box - that is dinner man."  Guess I should cook and leave food at home...although chocolate chip cookies have dairy and protein so really he is fine.
  • Buddy "Dude, you should be milking this for girls."  Alex "Um, no."  It really is good teen age logic if you think about it.
  • Buddy "Wait, you don't have to do homework? What do I have to do to get that gig?"  Alex - "Break your head - totally not worth it."
  • Buddy "Rehab will give you muscles!!"  Other Buddy "Alex with muscles - get ripped man!"  Do you even lift?  Well, yes, now you do.  Oops.
  • Young Nurse "I will get alcohol swabs to get the med tape off" Experienced Nurse & me "Pull it off all at once - no pain no gain."  Alex "I like you (to the young nurse) - you two can leave now (to us).  We won as she walked up and pulled it off all at once.  hee hee hee

Friday, April 24, 2015

The team, the shirt, the ride...now to get down the walk.

The week started like any other week.  The kids didn't want to get up and go to school and the adults didn't want to get up and go to work.  Alas, we all did what were supposed to even if it was a Monday.

It was at 6:08 pm that the week changed.
I had just walked back in from work and was talking to the Big Guy about the day and the awesome pork chops and spiced apples that I was planning on for dinner when my phone rang.  "Hey sweet baby boy - what's up?" Yes, I answer the phone in odd ways, and even if he is 17 or 97 he will always be my sweet baby boy or whatever other nickname I pull out of the hat at that moment but I digress.  It was when the trainer at JCP said - "Ms. Reilly?  Let me say Alex is okay first," that I knew something was off.  "Alex was hit with a ball and was now conscious without much blood but he can't seem to move his right side." It was at that point that they said he was going to have to go to the hospital care of an ambulance ride.  Alrighty then.  I talked to him, and in typical Reilly fashion, we both made jokes about not using the glove properly and clearly needing to be back in Little League.  He was laughing and not pleased about the fuss being made.

You cut my shirt?!?!?!!?
The next time I saw Alex he was on a back board, in a neck brace getting his clothes cut off by the ER nurses surrounded by about 14 people asking him questions.  The good part?  I saw him and said 'Hey dude - I taught you how to catch a ball better than that.' to which he responded 'I told y'all she was going to say that first! Hi Mom!'  I knew everything was going to be okay.  I knew my baby was making jokes and in good spirits.  I also thought they were being way too careful for something as small as a concussion.  Well, turns out doctors DO know more stuff than I do - who knew?  Okay, everyone knew but whatever.   Meanwhile Alex was pissed - and I mean fired up angry - that they cut his Burn The Boats basketball t-shirt off.  Not that he was in a neck brace or the ER.  Nope.  He was pissed they cut off his shirt.  Priorities man.

After a brief stint in the most depressing small brown room with the Tall One (who got to ride up front in the ambulance and had a great story to tell about that) and the Big Guy with no windows or TV they affectionately call the Family Room, I got to leave and go back into his ER room - room #1 of course - and hold his hand.  He was still in the neck brace as the CT scan results hadn't come back yet.  I am not exaggerating when I say at this point it got real and it got scary.  Alex asked the nurse if she thought he might go home tomorrow to which she responded 'Not with a skull fracture and brain bleed.'  Wait - what?  My baby fractured his skull ?  Say that again?  Surely you are joking, I mean, we already did the broken skull thing on purpose at 3 months old.  We can't possibly be doing this again.  He got hit by a baseball not a damned bowling ball.  All of this was running through my head.  I didn't cry, didn't scream, just kept calm as we squeezed each other's hand.  'Go big or go home Mom - that's what I did.'  I could only laugh and tell him to STOP GOING BIG ON THE HEAD STUFF!!!  Eventually the trauma surgeon showed up with the Neurosurgeon on the phone saying that the blood was not in the brain but on the brain so surgery was not expected.  My baby has blood on the brain?  Things registered rather slowly during those few hours.  The reason he couldn't move below the right knee - and barely could move the right thigh - was because the blood was pooled over the motor skills portion of the brain.  Okay.  We will figure this out.  The blood should dissipate into the system as it did when he had surgery way back when (that now seems like another lifetime).

And I can't go to the game?!?!?!
Off to the ICU for the night so he could be watched until he could have another CT scan in the morning.  The night ICU nurse crew was amazing, three men who knew how to treat a 17 year old boy who was no doubt scared but would never let anyone know.  He got angry again as it occured to him that he wouldn't be at the big JCP v MacArthur game the next night - a game that would clinch a tie for district and cleanse the pallet from not beating then in football or basketball this year.  Having a fractured skull and brain bleed didn't anger Alex, losing a shirt and missing a game did.  Of course.  He got to eat, and around midnight he got to sleep without a lot of waking.  I walked the floor like any parent would with a kiddo in the ICU.  I tried to sleep on the recliner they brought in, but that just wasn't meant to be.  My kiddo was hurt and I couldn't fix it.  That's just not cool.

We made it through the night and into the CT at about 5am.  That is when the good news came.  The blood had increased - it is a bruise after all - but the fracture had moved itself even again.  Confirmation of no surgery needed.  What this news meant was that he could move to the trauma floor for a few days, and if things progressed well, full time inpatient PT for a week or two.  Since then the days have been a whirlwind of Physical & Occupational Therapy.  A Cognitive Therapy test was done and confirmed that Alex is in fact a stubborn, yet smart, teenager so there wasn't any brain damage.  (THANK YOU GOD!)  The MRI confirmed that the blood wasn't in the brain and that he was ready to move to the full time rehab hospital.   As it stands right now - we are waiting for insurance to finalize the paperwork while a bed lays open waiting for us to move.  Apparently they can take 72 hours to process the paperwork and they take all 71 hours and 59 minutes of it.  Hopefully we move today...

A fly ball?  He knows better than to not have his head on a swivel!!
Here's how it all went down.  During batting practice, which he has been a part of for years, Alex (formerly called the Kiddo in this blog of course) was hit with a fluke fly ball that had to literally go straight up in the air and come straight down behind the BP protection fence to hit him on the head. His job is to be catching balls to throw them in the bucket and not to watch the batter hit the ball.  When he got hit, he went down and when he woke up, he couldn't move at all.  The coaches and players were amazing, getting the trainer there and stabilizing Alex immediately.  Feeling came back quickly on the left side...the right side is a work in progress.

It takes a village - it's a 24 hour visiting hours room
From the minute we got to the ER, we had support from our Jesuit family, our friends and family.  His baseball coach almost beat us to the hospital.  The principal was there in the ER with us reassuring Alex that school was not a concern, getting better was.  The principal reassured him of the same thing the next day when he visited.  His basketball coach was in the ICU within minutes of us arriving trying to figure out what was going on with his boy.  More coaches, teachers and parents  came to the ICU to visit with him keeping his spirits up giving the Big Guy and I time to walk around and comprehend what was going on with our youngest.  Jokes were flying, laughing about not using his glove, teasing him about the luck of having such long and thick hair right now.   The baseball team showed up for their pre-team meeting with Alex in his hospital room.  Alex was in a chair so the starting pitcher took the bed - he needed the comfort of course - and it worked.  The guys pulled off a 7-0 victory for Alex.  He sat in his room listening to the game, and coaching loudly, the whole time.  (I assure you, that will happen for every game he misses) The player who hit the miracle fly ball hit a 3-run homer and later texted Alex 'That was for you buddy' as did the pitcher and a many others.  His phone has been non-stop since we gave it back to him.  Apparently he is a Snap Chat story, and no, I don't know what that means other than it is a lot of pictures.  Grandparents have been around everyday with jokes, pool balls (it is project time of year after all) and hugs.  The room is full of candy, cookies, cupcakes, swimsuit editions and flowers.   Every minute of the day, a friend - some he hadn't gotten to see in many years, family member, my friends, a coach or a teacher has been in the room (even before he wakes up sometimes) or texting or Snap Chatting to remind Alex that they need him back.  That he is still a member of the Jesuit family.  That he is a friend.  That he is loved. The doctors love it and stay out of the room when the kids are around (as do us adult types) letting boys be boys.  It is a vital part of his therapy to have people surrounding him motivating him in whatever way they can.

You are entering the no-crying zone
Has this been scary?  Terrifying.  Has this been emotional?  Without a doubt.  Do we cry about it?  NOT IN THE ROOM.  We have a strict rule about crying.  Sure it is allowed as this is kind of scary but not in the room.  I have cried.  Three times - almost four so let's say three-ish.  But we don't cry in the room.  There is no need for it - we only need strength in this room.  And everyone has been amazing sticking to the only rule we have - THERE IS NO CRYING IN THE ROOM. Alex is of course the except, but Alex?  He isn't crying.  He is angry and motivated to get that foot to move.  He gets angry at himself, at me, at the PT but he knows, it's time to work.

Our new normal - it's about the little things again
We have a very strong faith.  We know this all happened for a reason and that we will get through it.  Maybe the reason is so other almost 18 year olds can not have to move to a new hospital for rehab.  Maybe it is a reminder of how amazing the Jesuit family is and how lucky we are to be a part of it.  Maybe it was so Alex, and his friends, could be shown how strong they can be when they are asked to rise to the occasion.  Maybe it is so he could be reminded that he is loved - that we all are.  All I know is, after a very loud - I yelled - discussion with God in the chapel I have come to accept our new normal.  From Monday to today Alex has made amazing strides.  He can bend his right leg.  He can move himself from the bed to the chair and back again.  He can walk with a walker and support from a PT but he is walking.  Our new normal is celebrating the fact that he put his own socks on.  That he is exhausted and ready to scream after two hours of PT because he was able to handle two hours of PT.

We are lucky
This morning Alex asked me why I don't blog as much anymore and I said life is busy and I don't make time for it with everything else on the schedule.  Today we decided I should start again and should blog this so we will.  Maybe that is the reason.

It's the fun

  • Doc "Do you know this guy?" Alex "Oh yeah, that's Billy!"  after they got to the ER from the ambulance.  Alex had no clue the Tall One had been in the ambulance up front with him
  • Alex "They cut my BtB shirt.  Who does that?"  after the cut off his clothes.  He wasn't angry about the backboard, neck brace or broken skull, but mess with his shirt?  Oh hell no.
  • Tall One "It was so cool!  We drove on the wrong side of the road, ran red lights, the whole thing!" Big Guy - "You don't get to every do that" when the Tall One was filling Alex in on his 'amazing' ride to the hospital in the passenger seat of the ambulance
  • JCP player "Yup - starting pitcher gets the bed.  Back off boys" the pre-game visit when he planted himself in the bed
  • Alex "Your hit was a miracle, you can't worry about it man.  Now go get me a win" when visiting with the player that hit the ball.  
  • Alex "COME ON GUYS. GET IT TOGETHER" yelled many times when listening to the game on the radio - good thing we were on an empty floor
  • Me "Don't break anything expensive" my mantra when I leave boys alone in the room.  Sigh.
  • Team "Can we get 30 pizzas?" when they realize there is food delivery in a hospital
  • Alex "I thought about saying 'I'm Batman' when they asked my name but they might not find it so funny with the whole blood on the brain thing." in the ICU after yet another memory check
  • Buddy "This is a hellova way to get out of school work dude" He's not wrong.
  • Coach "The basketball coaches wanted you to have this care package.  Two out of the three are okay for your sweet Grandma to see...the third I need to leave the room now."  when delivering the Jordan Spieth SI, a bag of candy and one other SI in front of Alex's Granny :)