History repeating itself, Phase 2

So last Friday was JPs surgery to begin the lengthening part of this process. It is the operation were he received his "Superman leg". It was a surgery we pushed up a month and half and that we were excited and scared about all in one.

The surgery would be a short 4 hours, as oppose to the last time (a 6-7 hour surgery). This time, it seemed tompast fairly quickly for Keith and I. It was still so hard to hand him over for surgery, but I did well with minimal tears. There is something about watching your child on "happy juice" that makes it a bit easy because they are so funny. I actually forgot how loopy they get.

The surgery was very successful and the doctor was happy with how it went and the positioning of JPs ex-fix. Due to Jonathan's leg being on the smaller side, we now have a goal of 3-4 cm for lengthening, rather then the 5cm we thought. This is so we don't compromise his bone.

They say that you go on to have more kids because you forget the pain of labor and only remember the joy of having the child. I feel the same about JPs journey. I forgot how horrible it is to see your kid in pain. How useless you feel when you can't help take away the pain. JP doesn't come out of anesthesia well- he thrashes and screams and cries. We try everything to calm him down, but with little success.

This time was so rough because he could verbalize his pain. It broke my heart to hear him say, "take off my superman leg" and "Mommy it hurts, make it stop". Friday night into Saturday was very difficult and meant no sleep for JP, Keith or I. Jonathan was in pain and didn't understand why. He also hated all the tubes and wires. It nearly broke Keith and I (again) and  made us question (again).

Saturday came and it was a new day...a little bit better of a day.  Just like last time, JPs epidural came out. This time he decided to pulled it right out of his back. This meant we had to get ahead of his pain now with oral medication, but also had us freaking out that he paralyzed himself. The CRNA (anesthesiologist) came and reassured us (more then once) he was okay and that he didn't paralyze himself. After the epidural was out,  JP became more like himself. This time it seems we were better getting ahead of his pain and Saturday was a good night.

Sunday came and the "old" JP was back. He wanted to eat, he asked to get out of bed and sit in the chair, he wanted to play, and wanted to just get out of his room. His (very awesome) doctor came in and checked him out and said go home! So by Sunday night JP was in his own environment and sleeping in his own bed and that was all he needed (just like last time).

Since being home, JP had been doing well. He definitely has pain at times, but he has moments of being himself. He is also starting to play more and more instead of just sitting and watching tv. He even learned to maneuver around the house. It's like watching your kid go through all the infant milestones in a few days. First he sat up and was playing, then he was scooting around the house, then crawling, and recently he has been standing and cruising around furniture, which means in no time, he will be walking... I mean running again! 

Today, we had our first post-op appt and all looks great. We are now officially lengthening.  What that means is we start turning his struts. This is exciting and causing me anxiety all in one. He has 6 struts to be turned/moved  and they come with a schedule. Today was the first of 3 and I'm so nervous about if  I moved them to the right spot! 

We also start pin care, which means carefully cleaning the pin sites to (hopefully) keep infections away. For about the next two months, we will turn JPs struts and hope to gain length in his bone while keeping infection at bay. So please keep us in your thoughts and prayers as we strategically lengthening his leg and hope for minimal pain and pin site infections.

This surgery has so many similarities as his first, but also so many differences. But just like the last one, I know the joy we will feel when we see his leg being closer to even then it was before.

Here we go....again

 The hospital bags are packed and ready to go....3 years ago that would have meant, "Get this kid out of me I'm ready to deliver." This week it means we are ready for surgery...again.

Our little Superman goes back in for surgery this Friday. We begin round 2, the next phase, leg lengthening.

Going into surgery this time around is such an interesting wave of emotions. There is less anxious feelings, but at the same time anxiety.  I'm excited, scared, happy, and frightened all in one. 

Less anxious feelings because I know what to expect this time- well at least with handing my child over for surgery. I understand better the feelings I will have come surgery day and know it's okay and natural.

An excitement and happiness knowing my baby will start his journey to two even legs! While even after all that is said and done after this surgery/ recovery-JP's leg will have about a 2 cm difference, it will be the closes his legs have been to even in a long time!

But yet the sadness ...

Of having to hand your baby over for surgery. This still haunts me, but I'm coming to realize this part will never be easy. Also JP will be in an external fixator for 5 or so months- this is new territory for us and that's scary too.

Of going through his closet tonight and starting to packet his pants away. The pants that haven't been altered to work with his external fixator and will never wear again.

 

Of worrying about Aiden. Not just how this will effect him this time,  but keeping track of who will have him  and making sure he gets to school on time, has what he needs for school and so on.

Keith and I met with JPs doctor last week just to get a run down of things again. The surgery this time should only be 4 hrs, as oppose to the 7 or so last time. We also learned the actual lengthening process will be about 60 days/ 2 months. So while he'll be in an ex- fix for 5 mos, we will only have to turn pins for 2.... Yes that's a sigh if relieve you here from me.

So we are learning and adapting with every phase of this process, but still feeling confident about our decision in saving JPs leg. So please continue to keep us in your thoughts and prayers as we go through this next step. Pray for us to handle the rigorous  PT process (it'll be 5 times initially), for limited pin site infections, and for JP handling his "superman leg"!

We will be sure to keep you posted on how things are going.