And Just Like That…

The day started out really great.  After Drew’s knee and toe stretches to warm him up for his daily walking routine, Drew stood unsupported, maintaining his balance completely on his own, for 10 seconds.  It was amazing.  All of this hard work, pain, and pushing was starting to really pay off.  He was walking faster with better posture each day.  Our dream for him seemed within reach for the first time in nearly five years.

We carried on with our normal physical therapy routine even playing games with a fellow partner-in-therapy who seems to always be scheduled for therapy at the same hour.  It was all giggles as Drew and the girl, H, took turns making silly faces for H.’s mom who shot a video from her phone for her husband’s birthday.   Drew and H. played “soccer” with each other as they kicked a soccer ball back and forth, cleverly disguising the exercise as fun.  The goal was to kick the ball between the other’s legs and yell “goooooooooooal!” like hooligans.  Drew was having too much fun so we had to refocus his attention on his work eventually.

We always save the most intensive part of therapy to last so as to not spoil Drew’s mood for the hour.  So, as we’ve done everyday for the last six weeks in which Drew objected to as always, the right knee bend.  It’s always been so amazing me that the fixator correcting his extension would remove the range of motion in his right leg because prior to the surgery it bent as normal.  And, because of the fixator, he is unable to bend his knee, not because of loss of muscle strength but because of some other force.  The reason I don’t think it’s muscle strength is because if it were just muscles, one could just bend the knee to a bent position for Drew.  But, during the knee bend, even with significant pressure, we’d only achieved a little over 90 degrees. And, it’s taken six weeks to get to this point.  Even still, Drew wasn’t able to achieve that 90 degree angle without the therapist pushing his knee to that point.  Drew was only able to bend his knee on his own to far, far less than 90 degrees.  Perhaps only 120 degrees.

But, we’ve made huge achievements.  Placing Drew’s brace on was no longer a painful experience, Drew had gained a tremendous amount of range of motion and muscle strength, he was walking albeit supported, but his balance was excellent for such a short period of time.  Attitude wise, Drew was mostly positive and cooperative often joking around with D., his therapist each day.  He no longer dreaded therapy and really tried his best.  That was thanks to the pain finally subsiding after the three weeks of turning his left foot the wrong way due to the wrong schedule.  I’ve said before that we were just at the end of our rope with Drew’s pain level, but once we identified and fixed the problem, Drew became a whole new person only requiring pain medicine about once a day. And, for the first time since the surgery, things felt like they were normal and I could see the light at the end of the tunnel.  Things finally felt…..right.

I was looking forward to the end of therapy because we had one strut change and was anxious to get home because I was hungry and Drew probably wasn’t too far behind me seeing as we skipped breakfast in the morning.  D. was doing his final knee bend stretch in order to have a partner therapist collect a new measurement on the angle to see how much progress we’ve made in the last week.  Drew was on his belly and had already done three knee bends and he was in a lot of pain.  I rubbed his back and we counted loudly so he could hear us and would know that it would soon be over.  Just as they were fixing to start the fourth and final stretch, I (honest to God) thought about asking D., “Has a therapist ever broken a bone doing any stretches?”  This crossed my mind because: at the beginning of therapy, D. came out a little late because there was a young teen who was doing his knee bends and was very loud and miserable so D. had waited until it was over to bring us in and watching Drew’s knee be bent, I wondered if it was possible to push it too far.  But, I didn’t ask and pushed the thought out of my mind.

The partner therapist, the one collecting the measurement, had started to say “ninety…” and Drew’s leg just appeared to “give.”  D. was pushing his knee to achieve the best angle possible, and it just suddenly released.  I don’t recall if Drew reacted at all to the “sudden give”.  I do know that Drew was previously screaming and uncontrollably crying, which isn’t abnormal when we do this stretch or his hip extension, but I don’t recall if Drew had a unique reaction to the “sudden give.”  Upon witnessing what was probably the most painful event in Drew’s conscious life, I immediately became overwhelmed with nausea.  I started to sweat, I felt incredibly sick to my stomach, and just wanted to lie down on my back, but Drew was inconsolably crying and I was doing my best to comfort him.  The therapists retrieved ice for Drew and some water for me and D. called the clinic to get us in for an x-ray.  I remember at one point, making eye contact with H.’s mom who had an expression of “oh shit.  What just happened?”

I assumed that Drew’s knee was dislocated.  I hoped that it was just a muscle tear.  I wheeled a still-crying Drew to the clinic down the hall and quickly into x-ray.  Picking Drew up was difficult.  It caused him a lot pain and his right leg, once straight and sturdy, was now bent at 90 degrees and was starting to swell.  Any amount of straightening his leg caused him unbearable pain so we had to make sure to grab him under the thigh and not under the calf or foot bringing his lower leg up.  Being pregnant, I was sad that I couldn’t stand next to Drew and hold his hand and give him comfort.  The last few times, Drew was very cooperative thus it wasn’t difficult for me to rush away to a protected area, but now, I just wanted to hold Drew in my arms while he suffered in pain as they delicately lifted and moved his leg into the correct position.  After about 4-5 x-rays, they put us in an exam room to await the results.

Drew spent the first 30 minutes crying and in a lot of pain.  I, obviously, wasn’t planning on being here at this moment so I had nothing with me.  Not even a diaper.  But, a nurse went out and bought us some extra-strength Tylenol to try to help with the pain.  She wasn’t allowed to get narcotics, so we had to settle for OTC.  But, the Tylenol worked.  As we waited, Drew fell asleep while resting his head on my hands (he was sitting in his wagon.)  I hadn’t yet notified anybody at home about what had happened as I wanted to make sure I knew everything so I could answer their questions that I knew they would have and I didn’t want to cause worry until I could provide sufficient information.  I was desperate to talk to somebody.  I was so distraught.  Distraught that Drew was in pain and that this would likely have some lasting effects.

I figured they would say that his knee was dislocated which I started to fear thinking they would just yank it back into place with Drew conscious.  I just didn’t want to have to stand next to him while they did that.  It’s so hard watching someone give him a shot.  I briefly considered that perhaps his tibia or fibula (lower leg bones) had been broken, but his lower leg didn’t look swollen.  It was evident the swelling was in his knee so I was pretty sure they would come back saying the knee had been dislocated.

I had just began to think that they had forgotten we were there (since we weren’t scheduled or on the day’s agenda) when Servando, a physician assistant of Dr. Paley’s, finally came in to speak with us.  He didn’t beat around the bush.  He just said that there was a fracture to his femur.  I hadn’t even considered that!  His femur!  That’s the largest bone in our bodies!  He pulled up Drew’s x-rays, one from two weeks ago which he pointed out an area of the femur where a pin had been placed and since removed and the x-ray from today.  He explained that the sites where pins have been placed in a bone become weaker and on the x-ray from two weeks ago, there was a very clear difference in color and opacity in the area that had a pin than the surrounding bone.  His femur had been fractured at this precise spot.  He said it was like taking a Coke can and bending it.  The bone didn’t break, per se, but it buckled at this weaker spot.  Looking at the fracture, there was a distinct dark line across the femur just where the femur starts to bulge out making the familiar bone shape revealing the fracture and the bone beneath the fracture was awkwardly angled.  Normally, a bone is straight, but with Drew’s fracture, his bone had a very distinct “kink”.  It was as if the bone on the under side of the fracture had just disintegrated thus giving the bone a bended look.

Servando explained that surgery would be required.  They were going to admit Drew to the hospital for surgery either that day or Monday, but that pain control would be critical until we wait for surgery thus the reason to getting admitted to the hospital right away.  They hadn’t yet determined a course of action regarding repairing the bone as Dr. Paley was on vacation and hadn’t returned their calls about Drew’s fracture.  But, he explained that it would either be an external fixator with a hinge or they could install a plate and some pins internally, but it would be up to Dr. Paley.  There was a lot to consider when deciding how to properly go about this surgery.  First and foremost, Drew couldn’t lose any extension that the fixator had achieved.

After a little bit, a fellow doctor who works alongside Dr. Paley whom I’ve never met before, but had heard of, Dr. Prince came and spoke with us.  Since Dr. Paley was on vacation, Drew would be under Dr. Prince’s care, with collaboration from Dr. Paley of course.  He reviewed the same details with me and at first, I was very disheartened to hear that another external fixator was even in the cards.

Finally, Servando returned to say they spoke with Dr. Paley and it was agreed that they would place two pins in Drew’s knee surgically and place a spica cast.  Upon hearing the words, pins, knee and cast Drew lost it.  For as young as Drew is, he is perfectly capable of understanding all things medical happening to him.  He understood that pins in his knee meant the very pins drilled into skin and bone.  He understood that cast meant he would not only have to wear a cast that would prevent him from sitting up, but would require a saw to remove.  In fact, his first objection was, “But we are going to have to use a saw to remove it!” (Drew was especially traumatized during the removal of his first cast when the saw was used.  Not because it cut him, but something startled him and ever since he’s had a phobia of that saw and will mention it on occasion.)

Drew was very upset with the situation.  He begged me, “Mommy, I’m begging you! Please don’t do this!”  He was very anxious, as was I.  I finally tried to reach out to Nathan, but as expected I was unable to reach his phone due to him being in the same dead zone that prevented him from calling for the past couple of days.  I sent him a text: You need to call me now.  Drew is ok and not life threatening danger…but something has happened.  Call me now…emergency.  I sent Drew’s Yaya and my mom a text with a brief description of what’s happened because I wanted to keep my line open in case Nathan called.  And, I waited for them to give us further instruction.

Nathan finally did reach me using a co-worker’s phone and was shocked and dismayed to hear the news, needless to say.  He said he would work on getting off of the boat and I began doing what I could to change Nathan’s existing itinerary.  Nathan already had a ticket waiting for his return on January 11, but this situation definitely called for an emergency change.  So, I started dialing…

Finally, they said they were going to send us to surgery right away so out we went to the surgical center.  The good news was that it was going to be outpatient surgery which was a relief because beyond being in pain and dreading the pins and cast, Drew was devastated that he couldn’t go home and play his Batman video game that he had been looking forward to all day.  They brought us back to pre-op and of course, Drew recognized the room and wasn’t pleased.  The nurses prepped him for surgery including an attempt to insert an IV and collect some blood.  They were able to collect the blood they needed, but the IV didn’t work out.  But, they assured me that they would do the IV while under anesthesia.   Drew actually did really well during the blood draw as, naturally, needle sticks are quite the nightmare for young kids.  But, we really stressed that the needle was very thin and would hurt a lot less than a typical needle and this actually calmed him down and he sailed right through it.

Sometime during this fiasco, I finally reached Delta and was able to change Nathan’s flight to later this day.  I know that I paid some exorbitant amount of money to make the last-minute change, but I was in such a rush and adrenaline, that I just agreed to whatever was needed to get Nathan on the next flight out of Evansville.

They moved us from the Paley pre-op room to the main hospital’s pre-op where they gave Drew some versed upon seeing how anxious he was.  Gradually, the versed took effect and his crying ceased and he began to stare off in space, often looking at his fingers with such concentration as he was trying to get them to sprout a mouth and talk to him or something.  I think I actually asked a nurse, “Can I get some this shit at home?”  Finally relaxing a little bit, the doctor performing the surgery came to visit to fill me in on the details.  I don’t know the name of this doctor, but he is extremely hot so from his point forward, I will refer to him as “hot doctor.”  Hot Doctor described the surgery in which he would place two pins into his knee which would protrude out of the skin, but a spica cast would be placed so we wouldn’t see the pins.  Drew suddenly chimed in, all chipper: “Mama.  Look at my silly face.” He stuck his tongue out and used his hands to pull the skin of his cheeks downward and crossed his eyes.  He added, “I forgot to do this face at therapy!”  Hot Doctor and I were squirming in our chairs as we laughed till we cried.   Drew said a few other random things, but I was laughing too hard to remember those.

Finally, it was time to go to surgery.  Thankfully, Drew’s calm demeanor and hilarity made it easy to hand him over to masked doctors.  Drew curiously looked around the room at the dozens of people gathered and he willingly breathed deeply with the mask until he fell asleep, even faking it a couple of times, the little prankster.  But, he did go to sleep, I kissed him on his cheek and out I went.  They let me choose his cast color.  Last time, he requested blue, but he woke up with a star-spangled red, white, and blue cast, which Daddy and I were extremely excited about, but Drew was not enthused with the doctor’s executive decision.  So, naturally, I chose blue.

I was escorted to the waiting room while I waited.  Hot Doctor had said it would take about an hour and 45 minutes and really, the longest part would be placing the cast and the fact they would collect so many x-rays on the way to ensure his leg was completely straight.  So, I updated everybody via text and Facebook as much as I could.  There wasn’t anybody else in the waiting room so I watched Extra on TV, flipped through a Better Homes and Gardens magazine and suddenly began to realize how hungry I was.  Now that Drew was off in surgery, I thought about myself and the fact that I, four months pregnant, hadn’t eaten in nearly 20 hours.  The recipes in BH&G were making me drool.  About 5:00, a god-send: D. and a fellow therapist brought me lunch from the hospital coffee shop.  It was actually a very yummy steak pita and pasta salad, but my favorite part: two chocolate chip cookies.  D. was absolutely broken-hearted and looked so distraught.  They both offered me hugs and let me enjoy my lunch.

As an hour and 45 minutes approached and I anxiously began to anticipate some news, I stared at Drew’s empty wagon in front of me and was just so saddened.  He isn’t with me right now.  It’s so different not being within immediate reach of Drew.  As any parent surely does when their child is in surgery, I thought of problems with anesthesia problems, excessive bleeding, drug overdose and was fearful that a priest would walk through the doors.  As two hours passed, I started to get really nervous.  But, thankfully, Hot Doctor made an appearance at the door.  And, I was excited to hear about how Drew was too! 😉  Surgery went well and said his leg is taken care of.  He said the post-op staff was undergoing a shift change at the moment, but would soon retrieve me to see Drew.

Though it wasn’t soon enough, about 10 minutes later, a nurse collected me from the waiting room and I was at Drew’s bedside.  His first words to me were, “Mama…why did you leave me?”  Heart.  Broken.

Drew was eating a popsicle which I gladly took over and though Drew begged for water, the nurse wanted to wait just a little bit before giving him water due to all of the medicine Drew had received.  Drew was in significant pain, understandably which they monitored closely.  Of course, it didn’t help that they were required to monitor his blood pressure and now that his right leg is covered in a hardened cast and he has short arms, they had placed the cuff around the calf of his fixator leg which caused frequent pain as it expanded and no doubt hurt his still healing incisions and pin sites.

The nurses were very impressed with Drew and commented multiple times on how wise he was.  They couldn’t believe he was only four.  Drew spoke so clearly and said thoughtful things.  He spoke about subjects you’d never hear a four-year old speak of.  But, it’s amazing what a kid will pick up when they spend so much time in the hospital.  And, these surgeries, therapy, his unique life experiences have really “aged” him mentally.  He acts more grown up than the average four-year old.  But, I imagine when you are going through what Drew is going through, your mind will do that to help cope with the stress and trauma.

Finally, going home!
Finally, going home!

He eventually calmed down and began adamantly requesting to go home.  Drew was drinking water and his blood pressure and heart rates had stabled out so they began to talk about discharge.  Daddy was due into West Palm Beach at 10:30 so I was anxious to get out as well.  Drew was doing so well, they finally got his discharge papers signed by the overseeing doctor and we removed his IVs, blood pressure cuff and tubes.  Then, it was time to get him in his wagon.  I was kind of at a loss as to how I was going to get him in the wagon comfortably as he’s longer than the wagon’s seat is, but I strategically placed his pillows in such a way to create a soft pillow and a cushioned “bed” to lay him in.  It was after dark and being that the hospital exists in a not so savory area of West Palm Beach, security drove me to my truck which was on the opposite side of the campus so I could drive back to pick up Drew.

If I thought getting Drew into the wagon was difficult, I had no idea.  Drew’s cast doesn’t allow him to sit up so he is, literally, like carrying a log.  A log that is in a lot of pain.   He has to go in either head or feet first, but he’s so long and stick-straight that it was extremely difficult to get him in without causing him great pain.  It took about three attempts with two nurses and I to change position and strategy.  We finally managed to get him in, but only with him screaming in pain.  We were all out of breath and exhausted.  I hadn’t yet thought about the special seatbelt required to accommodate a child laying in a seat on his back, so I just used the truck seatbelt and wrapped it around his ribs and under his back to snap him in.  I was sure to drive at an extremely cautious speed as to not take any risks.

We made it home and again, I found myself, eyeballing Drew and the wagon and shaking my head at wondering how I was going to get him out of the backseat on my own without causing him any pain.  In the end, I managed to do it, but it was a feat.  I can’t even describe it to you without this long-winded, confusing description that you probably wouldn’t understand anyway because it was basically a contortionists’ routine.

Luckily, Drew was very agreeable to having a neighbor watch him as I retrieved Daddy from the airport.  I was really not looking forward to getting him in and out of the truck again.  And, a neighbor happened to be available and more than willing to watch him as I rushed to the airport.  Seeing Nathan was such a relief.  On our way back to the apartment, Nathan had the nerve to say, “Ugh! I need a beer!”  This is an approximate illustration of my reaction:

are you kidding me

Of course, Drew was excited to see Daddy and he was surprisingly in good spirits all night long.  He was happy and easy-going, even playing Batman finally!

When it was finally time to go to bed, which was after midnight as we decided to indulge Drew and let him play his coveted Batman game for a little bit, I hit the bed like boulder and closed my eyes and tried to relax for the first time the entire day.  But, all I could see was Drew’s leg suddenly give.  It kept playing and replaying in my mind and I couldn’t stop visualizing it.  Even today, as I completed some errands, every once in a while, my body would just shudder and I would wince as the memory would enter my mind involuntarily.  I’m sure people thought I had some weird tick.  Each time I would almost get a new wave of nausea just watching again his leg just release and now knowing it was his femur collapsing.  It’s disturbing.

I can’t stop thinking about how much we’ve lost with the snap of a finger.  Six weeks of strength and range of motion to achieve standing up and walking.  Six weeks of stretching to get a 90 degree bend out of his right leg.  Six weeks of getting used to his brace and finally being able to place it on with no pain.  Six weeks of pain that had finally relented to an easy and relatively pain-free existence.  Six long weeks of progress.  And, now that he has to wear this cast for 4-6 weeks, we lose whatever progress we would have made during that time.  And at the end of the 12 weeks, we start over on his right leg from scratch.  Another six weeks of stretching and exercise to get back to where we were yesterday morning.  It’s more than taking two steps forward and one step back.  Try more like three steps back.

Nathan said, “It feels like we are being tested.”  And, it really does.  Drew has gone through so much since May.  Four surgeries now.  An indescribable amount of pain.  A lifestyle change.  As a family, we’ve gone though major changes.  Moving away from family and friends.  I lost my job.  A new, exciting and risky pregnancy.  It really does feel like we are being tested.  For what, I don’t know, but I hope we are passing.  And, I hope this was the final question! And, no bonus questions!

IMG_20130105_182940I recall during the last cast, hating the cast more than the fixator.  Drew can’t sit up.  He’s in a perpetually lying down position.  His head and shoulders can be elevated, but it’s hardly “sitting up.”  He’s even heavier and more awkward to carry as neither leg can bend or mold to a normal carrying position.  He can’t take showers at all which saves my back the strain, but how we must resort to sponge baths on the living room floor.  There is the frustrating battle of preventing pee from entering his cast so we must use tons of bandages and pads to try to build a pee dam.  Diaper changes are awkward as his lower half must be lifted in order to scoot the diaper underneath him, but of course, it’s painful to move him.  Ugh…it’s just misery.  For four to six weeks.

This doesn’t affect his left leg at all so we are still on course with that leg.  Although due to the drama, I forgot to have his strut changed so we won’t be able to make that adjustment until Monday.  But, the leg is looking good correction-wise.  He still has massive bruising on the bottom of his foot from his toes being so scrunched together and his pins look pretty gnarly.  But, you can finally tell his leg is getting close to straight and his foot is going the right direction.  See for yourself: (note, I forgot to do pictures for last week so the most recent pictures are two weeks of adjustments)

 

 

13 Comments Add yours

  1. Ann Toth says:

    Wow, what a day, such a huge amount of pain and the set back is terrible! I read this and cried so hard I had to quit reading until could calm down. Reading on I found myself laughing until I cried, & then I was crying from the painfulness of it all again! I can only hope the next 4-6 weeks will sail by! We love you kids so much & are so very proud of you!

  2. jill says:

    I feel so much for you and Drew, He is such a delight and has just always keeps going , Please call me any any !!! time when you need help luv Jill,dyna, and nicky boy

  3. Hayley Wiliams says:

    I just hate all the “downs” you guys have had lately and hope that there will be a lot of “ups” in your future. Drew is already a hero in my eyes as you and Nathan are. One day through these experiences, I know your family is going to be able to help other families. Praying for you as always 🙂

  4. Ann Toth says:

    Thank you Miss Jill, so thankful the kids have you in their lives!!! GOD bless you!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s