Tuesday, October 29, 2013

Casts are off!!!

Well, the day that Cam has been waiting for has finally arrived.  THE CASTS WERE COMING OFF!!!!  3 weeks have passed and we headed downtown for what Cam thought was going to be the best day ever.  Kevin and I had tried to prepare him that he would be sore and that things were not going to feel outstanding just because he wasn't wearing casts, but regardless, he was excited.  10:15am the guy from the cast room calls us back and immediately begins cutting.  Cam is laughing, especially when he gets to his feet because it tickles so much.  It is so nice to see him laugh and smile while we are at the doctors office, normally he is mad and afraid.  He cuts and cuts and cuts then pulls them apart and rips them off!! Cam is smiling from ear to ear until he realizes how much it hurts to move any part of his leg, ankle or foot.  Now the disappointment starts to set in, it's written all over his face.  Then the cotton comes off and we discover big, and I mean big, bruises and blisters on his knee caps from where the casts were pressing :(  No wonder he kept complaining that his knees had been "shot off and were in lava".  Now they fit him for knee immobilizers, which I was dreading, and it turns out that he likes them because they support his legs so they don't move.  Finally the surgeon comes in to see the results and remove the stitches.  She was very happy with how straight his legs were and how well the incisions had healed.  Now the nurse starts taking out his stitches and I start going down, and by down I mean lightheaded, nauseous, sweating, on the verge of passing out!  LOL  Not sure why, but she made me feel better telling me that most parents experience the same thing.  So while Cam laid there all brave and relaxed while they removed all the stitches I sat in the chair white as a ghost drinking my grape juice :)  

Once we finished we headed for home and Cam couldn't wait to take a nice hot shower.  Him and I fumbled our way in and out of the shower/bath with only a few minor pains and mishaps.  Let's just say that was not meant to be a one man job, an extra set of arms would've gone a long ways.  He was ready to relax in bed and watch videos on his computer for a bit and settle in.  Meanwhile I found myself sitting in the kitchen wishing he had his casts back on.  Over the last 3 weeks we had a pretty good system in place,  the pain was nearly gone and we were moving in the right direction, now I feel like we've gone backwards.  In my rational mind I know that the step we took today was in the right direction, but come on now, who is rational at this point.......certainly not me!  We worked our way through the day, had a couple very special visitors and Cam even got a bag of Halloween cards from the kids at St. Damian!  

Tomorrow begins a whole new adventure.....we check into rehab!  Tomorrow we will check in around lunchtime and spend the afternoon getting settled into our new temporary home.  Thursday morning will be the "real deal", we meet with the therapist for his evaluation.  I have been trying to prepare Cam for this by moving and stretching him as much as he will tolerate letting him know that the therapist will be moving him every which way come Thursday.  I hope that things go better than my gut is predicting, but if  I was being honest, I am scared to death of what's to come in the next week.  I am so afraid of seeing Cam in pain that I already have a knot in my stomach and we haven't even started :/  I am trying to keep that under wraps and stay positive for Cam so he can go in with an open mind, but inside I am screaming obscenities!  

We will keep you posted as rehab progresses and hopefully be able to post some pics of his progress.  For now I want to thank all of you again for your kindness, generosity and all of your thoughts and prayers.  I know in my heart of hearts we are making strides in the right direction and we will see great success.  Cam is one determined little boy that I know will put everything he has into making this worthwhile.  When I think of it that way it makes me smile from the inside out! :)

Sunday, October 13, 2013

A large dose of reality

Saying that the last five days have been hard would be an understatement, a huge understatement!  We were all prepared for surgery, like the ones in the past, but we weren't prepared for what followed.  

    I will admit, the anxiety preceding this surgery was greater than any other because we knew the recovery period was going to be longer and harder than any of the others.  Leading up to the surgery there were a lot of sleepless nights, knots in the stomach, cries in the car and a whole range of other things.  But what followed the surgery has been far and away the tallest mountain peak we have attempted to climb.  I feel like we are climbing Mt Everest and just when we think we are reaching the peak, flag in hand, the clouds move in and we are forced to descend and start over.  
Cam finally resting peacefully after getting the pain under control.

Cam received over 50 get well cards from the kids at both schools, he clearly has no shortage of friends.
The firefighters bring Cam home :)


Cam thought he was ready to get back to his old habits, unfortunately it only lasted 10 minutes before the pain and dizziness kicked in.  Seeing Declan brightened his day, even if only for a moment.

    As Cam came out of surgery we were informed that they were unable to do the spinal block, which would have kept Cam's legs numb for 6-10 hours after and allowed him to be comfortable for what would be the worst pain immediately following surgery.  Instead when he came out the pain was terrible and they gave him 1 dose of toradol and 2 doses of morphine within the first 30 minutes of him waking up.  All was fine until all of the meds and the general anesthesia wore off all at the same time and within minutes we were way behind controlling the pain!  This turned into the longest, hardest 2 hours of our lives.  There is nothing worse than witnessing your child in pain and not being able to take it away.  I have never seen Cam in so much pain before, he would look us in the eye and say " help me mommy, help me daddy!"  "do something" " take my pain for me please mommy"  I didn't know what to do or say.  The nurses were in and out, on the phone with the doctors, desperately trying to figure out what to do.  Meanwhile Cam laid on the bed screaming and crying like I'd never seen.  After what felt like an eternity they finally gave him enough valium and morphine to knock him out.  After this episode the pain management team came in and hooked Cam up to a PCA (patient controlled analgesic) and he could administer a small dose of dilaudid every 8 minutes.  This along with a large dose of valium and hyacet every 4 hours seemed to keep the pain under control.  We ended up staying a second night in the hospital for pain control.  By Thursday afternoon they removed the pca and started him on Roxicet, which is stronger than the hyacet.  At this point, I am missing my Cam.  He is not himself, does not remember things, can't talk and just wants to sleep.  Friday comes around and it's time to head home.  The amazing firefighters from Palos picked Cam up in their ambulance and drove him home.  We had numerous offers to help get him home and we are grateful for all of them.  

     Since coming home we have seen very few moments of "Cam" which is the hardest part.  His contagious smile has been wiped away, his witty personality and amazing sense of humor are gone, the light in his eyes that touches your soul is dark and he is in a constant state of pain, uncomfortableness, sadness and regret.  We are trying our best to get him off the strong pain medication, but cannot seem to find a balance of comfort and medication.  We go from tears of pain to completely sedated and sleeping.  The entire process is taking a toll on everyone mentally and physically.  Cam's body cannot handle the downtime for much longer before we end up in a place where no amount of rehabilitation will bring him back.  All of this will be for not if we don't start making some progress.  

     His spirits are low, lower than I have ever seen them.  Tonight he had a very tough conversation with Kevin and my mom while I was in the kitchen trying to take a breather and recover from the hours of crying Cam had been doing over pain, frustration and sadness.  Cam has always been the kid that told us he was OK just how he was and never seemed to care that he couldn't play sports or run like other kids.  I think we always knew deep down that somewhere there was a part of him that cared, well there is!  Tonight as he was working through his pain and frustration he discussed his regret about doing the surgery, wishing he could go back because it wasn't worth it, he let loose.  He told them that he just wants to be like other kids, he wants to play sports, he wants to feel the grass between his toes as he runs across the yard just once, he wants to walk on the beach and feel the sand between his toes.  He said he wants to be a daddy one day, but never can because you have to walk to be a daddy.  He doesn't want to be broken anymore..............

     I am not sure if he will remember that he told us all of this, but there is a part of me that is happy he got to let it out and a part of me that wishes we never had to hear it!  Every time I think about it it brings tears to my eyes and my heart breaks all over again.  The last 5 days have been unimaginable.  I think if any of us knew that it would be like this we would have made a different decision, but I just keep going back to "everything happens for a reason."  In this moment I can't tell you what that reason is, my thinking is fogged by sadness, heartache, frustration and anger.  I know that we will come together as a family and work through this, but the road is rough right now.  I only hope that we turn a corner, the clouds recede and Cam can begin an amazing road to recovery very, very soon.  I hope that he is not disappointed with the results and that he can have the chance to feel his feet beneath him again even if it's for a moment.  

     The thoughts, prayers, love and support are what keep us going, so keep them coming because we have to keep going.     

Thursday, October 3, 2013

Surgery is right around the corner!

Well, October 9th is not too far off and with the days passing like hours it will be here before we know it!  Last I left off we were going for an evaluation at RIC to see if there were any other options left besides surgery and the answer was a resounding NO!  They brought in some equipment for Cam to try to see if he could tolerate standing with his contractures and he was in too much pain to even last for a few minutes.  Basically we all came to the conclusion that if he wanted to stand again, surgery was our only hope, so October 9th here we come!  

 At this point, we are all ready and just want it to be over, the anxiety seems to build more and more everyday as we wait.  Cam is ready, in fact as we were waiting for the bus on Monday he said " why can't my surgery just be on Monday so we can get it over with!"  I agree with him 100%, I just want Wednesday to come and go as quickly as possible.  He seems to be dealing with it very well.  He has had a lot of questions for me and seems very open about it, which is a huge step for Cam.  He even told me that he has told almost all of his friends at school that he will be having the surgery and returning to school with casts on for a few weeks.  Somehow the fact that Cam is OK with everything makes it just a little easier for us.  

Basically the plan is this......

Surgery October 9th, typically they keep us just one night until the pain can be managed with prescription meds that we can give at home.  From there Cam will wear straight leg casts for about 3 weeks.  (He is really not looking forward to that part).  On October 29th we head back downtown to get his casts off and immediately check in to RIC for 2-3 weeks of inpatient rehabilitation.  Cameron will see PT and OT for approximately 3 hours a day in order to try and rebuild the strength he lost during his downtime.  Our goal is to get Cam to a point where he is comfortable in a stander, which we are hoping should be in by the time we get home.  ( http://www.leckey.com/products/mygo-stander/ )  Cameron has set his mind to stand on his own and wants to try his best to walk again!  He seems very determined to make this worthwhile so we are behind him 110%.  I hope that the results live up to his expectations and that his pain is not too great.  

As for Kev and I we are hanging in there.  I think we are doing as good as any parent in this position would be doing.  We have our sleepless nights, our days where we are feeling down, our days where the anxiety seems to be all you can focus on, our days where we feel hopeful of the results, and our moments where we are so proud of Cam that nothing else matters.  We have remained open with each other about our feelings and emotions and tried to be understanding when the other is having a rough day, but let me tell you, it's not easy.  We have our moments where we both fall off the wagon at the same time and we look at each other and aren't sure who is going to take the first step to help the other one back on, but somehow we pull through.  

We are blessed to have an amazing support system of family and friends that are always there for us in moments like this, and for that I thank all of you, relationships like those are priceless.  I have a great deal of confidence in the team of doctors that will be with Cam on this journey and know that they too only want the best for him.  The next 6 weeks will bring a series of physical, mental and emotional challenges for all of us, but I know that together we are so strong that nothing can stop us from pulling through.