Saving a Limb is...hard

For the last few years, I have been very positive about saving JP's leg. I have tried to boost the spirits of those in our support group that have been down.  I had some doubt during JPs first hospital stay, but once we got home, in his own environment, his attitude changed and I was back.

JP is almost 3 weeks post surgery and it has been 2 weeks since we started lengthening his leg. He's doing great handling his second major surgery and he's not even 3 yet. He still amazes me.

But this has been hard, harder then I thought. I figured second time around, we got this, but it's has been more of a struggle or maybe just different. JP is moving around well, but not walking yet. He's happy, but he has  pain, more pain then I anticipated. I also think he's scared. Scared because he's not sure what to think of the sensation the pins in his leg give,  scare to walk, and maybe scared of how it looks.

We have rough nights- JP hasn't  slept through the night since surgery. He's up in pain or he wakes up crying because he is uncomfortable. We are trying to help him by giving him valuium, Tylenol or pain meds, and raising his leg with a pillow. We have had some nights with  stretches of 6 hrs sleep (so Momma is happy those nights!), but it typically takes 30-45 mins to calm him down and get him back to sleep. Some nights I walk and paced the floor with him and feel helpless.

Last week, he had his 2nd post op appointment and his first strut change (struts are what they use to help lengthen the leg). He was doing great and even helping the doctors change it with his tools, but it was a bit hard to change the strut because of his leg being so small. There isn't much room to work with and a lot of tension built up and it "popped" which hurt him. He wasn't happy after that, bribing with food didn't even help. I felt helpless.

We started Physical Therapy this week-JP is slated to do "land" therapy 3-4 times a week, which we will do at the place he's been attending for the last 14 months called Theraplay.  He's slated for aqua once a week, but we are still waiting to get on the schedule. PT  is now more like torture then rehab. JP use to be so good, go back and play with the therapist and loved being there, but the last two days he has hated it and made me go back with him. 

They're are trying to get him up and walking via a walker. He did it once without even being asked to do so, but since then he won't, he refuses. He claims he can't walk. We have to bribe and force him to use the walker, but luckily today he was open to doing it the 3rd time we pushed.

They are also helping him stretch out his leg to help him keep  it straight and he hates it, in fact he screams bloody murder. He says it's painful and he acts like it hurts too. I'm concerned (well so our the PTs) because he wants to keep his leg bent which could cause so many other issues. We are to also do stretches at home, but yet he cries and resist us too. I try to push through, but I feel helpless.

Then there are times he surprises us... He pulls himself up and then let goes and stands on his own or he gets himself out of his bed and room somehow.

I have been struggling and this recovery process seems  different and harder then last time. I feel helpless because he seems to have more pain, more sadness then before. But we are a part of an amazing support group, who have people ahead of us in this journey, they have provided some great advice and suggestions because they have been there. I'm trying to keep my eye on the prize....a longer leg. A leg that in a few more months will be closer in length to his "good" leg.

So saving a limb is hard, but I hope in the end JP will appreciate it.