A Video Update from Parker...day 3 post op

Oh what a difference this afternoon...Parker is quite happy with his progress and you can see the joy on his face in this video.  We are so happy for him.

Click here to see and hear from Parker

Loose Screw and Stronger Than Titanium

First off, Parker is doing great, especially considering the major surgery he just endured.  We can’t even begin to tell you how proud we are of his “stronger than titanium strength”, his patience with the “unexpected”, and his resilience.  I am marveling at his growth since this time last year, when he only had one foot repaired.  There have been some frustrations that normally would have had him ranting, but he really has kept his cool and been polite regardless and he cried/complained when we were alone in the room.  This is huge, considering how little control he has over things right now.

Secondly, he is on the floor he adores, with the nurses he loves and who know him well.  That is a huge blessing since they were going to try and put him on an adult floor, because you know our kiddo is a man-child now.  Being on this floor gives him some predictability and the staff has amazing kindness and love.  The nurses are incredibly special to him because they care so much.  Plus they have watched him grow over the years.

Now for what HAD to be done…The left foot went as expected and even a little better than expected.  The surgeon was able to get the entire broken screw out of his foot without damage.  That was huge, because he really thought he would have to leave the back half of the screw in.  He used the bone harvested from Parker’s hip to repair the left subtalar fusion and added a new titanium screw.  Then, he went into the right foot and unfortunately there was a screw loose in addition to the cadaver bone failing.  So the loose screw was pulled out and he reinforced the bone with the harvested hip bone and put in a smaller screw to fuse the foot again.  The left foot/ankle is casted and the right foot is splinted.  Both feet/legs are numb from the epidural, which is awesome.  The left hip is screaming at him. They are working on controlling that pain with oral meds, so he can work on movement in the hip to get ready to start practicing transferring from the bed to his wheelchair without using his feet.  Most of that hard work will start on Thursday when the epidural is removed.

In the meantime, he will get SI joint injections.  Also, the nephrologist just called to share that the results of his 24 hours urine study didn’t show improvement and that she wants a med increased and has requested an ultrasound for another possible kidney stone.  I guess we are in the right place … so that is being added to the protocol for today or tomorrow. 

In addition, his lungs have been a little mean.  He has needed to use a rescue inhaler and do some lung exercises.  He has worked like a champ all morning and is now resting…didn’t get much sleep last night. 

We are pleased with his progress thus far.  He is in good spirits and loved having his brother drive into town last night to see him.  Once again, we thank all of you for your never-ending support.  Our family is most blessed to have such good people in our lives.  We love you all.

Surgery…Again!

Parker asked me to update everyone on the craziness with his feet.  If you follow us on Facebook, you already know that he has bilateral foot surgery scheduled for Monday at our local pediatric hospital.  If this feels like déjà vu…well, it feels like that for us too.  This is the 4^th time Parker is going under for his feet/ankles and for a total of 6 surgical procedures.  His disease is making things way more difficult because his body is seeing the cadaver bones as foreign objects and rejecting them.  Then they disintegrate and get reabsorbed back into his body leaving an open space where bone should be.  We have just decided that his body doesn’t like “dead people”. 

So here is what is happening:  the cadaver bone in his left foot is completely gone and the open space must have created such a torque in his step that it snapped one of the 3 screws in that foot right in half.  Yes, he is stronger than titanium. 

Broken titanium screw

So, the surgeon is going to try and remove the broken screw, but he may have to leave the back half in, if the bone around it is too brittle.  In addition, the right foot’s cadaver bone is hanging on by one corner and is very lacey. The doctor is going to replace both of the cadaver bones with bone harvested from the crest of his own hipbone. 

He is expected to be in the hospital for a week and while he is in-patient, he will also get injections of cortisone in his SI joints.  These joints have gotten progressively worse. So, this should help not only his joints and lower back but also some of the pain that will come with being bed-bound for a while.  He will be non-weight bearing on both feet; and we know that recovery will be at least 3 months before he can walk again.  One plus, is he has gone through this before; so he knows pretty much what to expect…one negative is, he has gone through this before and knows what to expect… 

Please keep our kiddo in your thoughts and prayers.  Much love to each of you.