Wednesday, February 13, 2013

Strength From Within

We are 4 weeks after surgery.  This was when I originally had thought we would be coming home from Baltimore but am so very thankful that as of tomorrow we will be home 2 weeks already.  Sam is getting stronger and stronger each day and he is adjusting to his new reality with the external fixator and all that it entails.  I want to take a moment and explain what Sam's day to day reality is like.

When Sam first came home he was able to stand for only a brief moment but long enough to allow a transfer from one point to another with assistance.  He required assistance to go from sitting to standing and he had little to no movement in his left leg.  After 1 week I taped him working on his standing and his exercises.

It was amazing to see the improvement in his standing and his movement.  My favorite part is the smile on his face when we finally count to 10 while he is standing.  This little boy is working very hard attempting to make his left side move while strengthening his right side which was originally the side that was weaker due to his brain injury.  My need to assist Sam with his movement caused my back to seize up and Sam and I both had to rest for a couple of days.  But what you see in the video is only a small part of our day.

So what does Sam's day look like?  Sam is usually beginning to wake around 6:00-6:30 because he has gone all night without pain medication and the pain begins to wake him up so I get his pain and thyroid medication.  Sometimes he can fall back asleep and other days he's ready to get up for the day.  He uses a urinal while in bed to empty his bladder.  I take out his hip extension bar and help him to transfer from his bed to the wheelchair.  I then wheel him into the living room and help him transfer from the wheelchair to the recliner.  After getting his pillow situated for his leg, covering him with his blanket and giving him the control for the Wii so he can watch Netflix I head to the shower.  After a quick shower I'm ready to make Sam his gluten free, healthy breakfast and I record any and all medications given on an Excel spreadsheet.  Sam is able to have pain medication (oxycodone) every 4 hours or as needed, Valium for muscle spasms as needed or before PT, stool softners to assist with the constipation the first 2 medications cause and then we added an antibiotic for some possible pin site infections that had to be given every 6 hours for 10 days.  Add to this his 17 different supplements (each with varying daily quantities), exercise/PT and you begin to see why I have everything on a spreadsheet...I just can't keep that much information straight on a daily basis.  Before Sam eats his breakfast I give him a scoop of coconut kefir and a scoop of fermented vegetables to help with his digestive tract and immune system.  I mix a calcium supplement into his orange juice and I give him 9 drops of Vitamin D. After breakfast I get the first batch of supplements and a stool softner into Sam with apple sauce. When we have finished with the vitamins we do our first set of stretches and sit/stand with the walker.

I give Sam a short break and time to enjoy Netflix as I get his homeschooling activities together.  Due to Sam's pain issues and his pain medication we are simply reviewing things Sam already knows.  You learn to pick your battles and I don't think anyone is really receptive to learning new things when there is pain or effects from medication involved.  Here is Sam working on his reading/comprehension with something he really likes to do and then an attempt to do some math.  Sam struggles with math day to day, we work on math problems and bringing math into his day to day activities as much as possible and yet there are days like the one on this video where he either chooses not to attend or just tries to guess his way through. When I see that struggle I assist and go into more of an input mode than an extraction of information mode. I also like to show both good and bad homeschooling scenarios with Sam...I don't want anyone to think that Sam is really, really easy to work with or that he never fights or refuses to just depends on the day and his mindset. When I first started homeschooling, every day was a challenge but when Sam realized that I wasn't going to give up on him he decided to cooperate...occasionally.

In between our academic areas we throw in some physical activities to keep getting him stronger:  balloon tennis, throwing a weighted ball into a basket, throwing/catching with suction cup paddles, opening and closing arms to move a ball on string back/forth, auditory game of choosing the right item to throw into the garbage can, nerf target practice, Wii work out game.... A couple of times a day I try to throw in some type of respiratory exercise blowing or breathing into an acapella. Even on Netflix breaks I try to work on Sam's conversational speech and turn taking.  Then he transfers back to the wheelchair, transfers back to bed and I put the extension bar in for a hour while he plays with his Ipad or works on a puzzle.  When his hour is over I remove the bar, transfer him back to the wheelchair, transfer him back to the recliner and head to the kitchen to get lunch ready.  After lunch if pain medication is needed I give it with his thyroid medication and stool softner. If Sam has done well on his academics he can watch Netflix, a movie or play with something of his choice.  Then it is time for another round of exercise, transfer to the bed and another hour of the extension bar.  When Sam's hour is up another transfer to the wheel chair and back out to the living room. Then comes making dinner, giving Sam his second set of supplements, a little down time to take Buddy outside, check my email or read a chapter or two in my latest book.  We have now added walking into our afternoon session and here is a video showing Sam working hard to make it back and forth in the living room.  He is still learning how to move his legs since he can only weightbear 50% on the left side and he doesn't always calculate very well where he is going to sit down.  I still see a lot of shaking in the left leg during walking and exercises as he begins to reactivate those muscles...but I am so proud of how far he has come in 2 weeks of being at home.  He yells a lot and I'm okay with that...heck I would be yelling too if I was going through what he is. I like to videotape myself working with Sam so I can see areas I need to improve on, like locking the brakes on the wheelchair, not moving the walker forward too far and anticipating better ways to spot him as he walks.  But, WOW look at him go.

After dinner Sam has some down time, more pain medication and at around 8:00 we are usually transferring to the wheelchair, to transfer to the commode and then transfer to the shower chair.  To properly take care of Sam's pin sites we have to shower him on a daily basis.  The first couple of showers were tough because he knew I would be unwrapping his pin sites and he was not happy about it. Jeff had to physically lift him from the wheelchair and into the shower because Sam wasn't helping with that transfer.  Now after 2 weeks he seems to understand that the shower is a necessary evil and he will work with me to stand and transfer.  The first couple of showers were very loud with a lot of screaming and crying but he has adjusted, still says "No" but will calm down once he is in the shower.  He also had some pin site infection so the unwrapping and washing was painful at first.  Why does Sam hate these showers?.  He watches us remove the shower doors.  He has to sit on a hard plastic chair, which we have now learned to cushion with soft towels.  I have to unwrap the gauze and remove the sponges on each of his six pins then use antibacterial soap to floss each pin to remove any crusty debris (Ewww).  When the shower is finished each pin site is sprayed with an antibacterial spray, gauze or a dressing is applied to each pin site, sponges are added for compression and then gauze is used to wrap and hold the dressings in place. Now picture doing this on a child with severe sensory issues...are you beginning to feel my pain??  This will be a long 4 months and we will have our good/bad days.  I had originally requested medical care to help us with this process because if Sam was really going to struggle I was pretty sure my family members were all going to be a little grossed out by this process.  I was correct, neither Jeff, Ben or Danielle can fathom looking at, touching, cleaning or wrapping Sam's pin sites.  But Jeff helps with removing the shower doors, getting Sam into the shower and removing him from the shower...all the time trying not to look at Sam's pin sites.  Ben and Danielle will run and get supplies as needed and try to distract Sam from what I am doing.  Overall, even with Sam's sensory issues...he is handling this pretty well and Jeff and I both agree that adding a stranger to the process would probably upset Sam more than it would help us so we have decided to go it alone.  The next couple of pictures may be hard to look at but I think it gives you an appreciation for what Sam and I are going through.  These were taken for Sam's doctor to assess his pin may not want to be eating when you look at these. I have always promised that I would share the good, the bad and the ugly to keep everything real.  Well here's the ugly and I think this will quickly help most to understand why this device and this surgery were hugely difficult for me to wrap my mind around. It is one thing to say that the pin goes through the skin, muscle and into the is another thing to actually see it on your child.

Here are the 2 pin sites at the bottom of Sam's thigh.  They are enlarged due to his struggling/movement the first couple of days after surgery when we struggled to get his pain under control.  We will be using compression wraps to help heal these further.

The next two pictures show the holes that worried us the most.  The first picture is of the 3 holes that are in his hip.  They were red, painful and just looked awful.  After quite a bit of research and knowing that Sam's body does not always react well to medications we are using silver dressings and will try a Manuka honey dressing to help heal these and keep them free of infection.

The next picture is the hole that is at the back of his thigh.  This is probably the most uncomfortable pin because you are always applying pressure to it when you are sitting or laying.

The goo that you see was partly infection and partly tissue granulation.  More medical stuff I never really wanted to know about but no longer have a choice.  When Sam comes out of the shower it takes me 20-25 minutes to apply dressings, gauze, sponge and then wrap to compress.  Every night for 4 months.  Now you understand my Facebook quotes about patience, perseverance and strength.  After the pin care is completed  Sam is transferred back into his bed, the extension bar is put into place, pain medication is given if needed and he sleeps through the night.  We have had good/bad nights depending on how well the pain is managed and if he has any muscle spasms.

Sounds like a really fun day...right??  What I described was a good day, on bad days we alter as needed except for the medical portions that are a must for each day...medication and pin care. do I do this and remain sane???  Through my faith and by watching Sam lead me through.  If he can get through each day and still manage to smile and laugh along with some yelling and complaining with the pain and discomfort that comes with this type of procedure and rehab...what do I have to complain about??  It hurts me to know he hurts, it frustrates me to have to put him through this but I know I am most useful to him if I am strong, compassionate, patient and fun.  Each day I tune into Sam and let him guide me, if the pain and discomfort is high we snuggle more and do less, if it's a really good day we push a little harder, if he's just tired and worn out he naps, if he's bored we find something to do.  Yep, right now my day revolves completely around Sam and I try to throw in keeping track of Jeff, Ben and Danielle, feeding my family, walking my dog, cleaning my house and finding a little time in between it all to pray, to breathe, and to just dream.  Dream about Sam walking again....dream about Sam having little or no pain on a daily basis...dream about Sam riding his bike again.  I can get through 4 months of anything with dreams and goals like those.  Each day Sam gets up and somewhere, somehow he finds a strength within that gets him through whatever his day is going to throw at him and each day he smiles, he laughs, he tells me he loves me and I dig deep into myself and I decide to do the same.  Good Night everyone!


  1. Sue, I finally looked at the pictures, (and read the whole post, of course) Disturbing, but not as bad as I thought they would be. I hope it helps you that I am praying for Sam and your family - for good spirit and perseverance, and strength when the spirits are down. Good Bless you and your family.

    1. Soooo...does that mean you are out of bed today??? I'm thinking about heading back to bed. Yikes, some days are challenging.

  2. Dear Sue, I just wanted to tell you that I think Sam is such a sweet kid - so loveable even in the midst of all he is enduring right now. And what a wonderful, passionate mother you are for him - just like your own mother was (and I'm sure, still is) for you. You are so lucky you two get to hang out together. Really, really wishing you both all the very best!