The day we've been waiting for...

It was a long night the night before sending my little man into a very long surgery. We let him go swimming until he wanted to stop.  We let him play with his cars and stay up late. When HE finally asked to go to bed, we put him down and kissed him good night.  What we didn't know is that he would be WIDE AWKE by 2:45am!! He got up and just started jumping and singing and giggling in his bed. We did everything to try to get him to sleep but all he wanted was juice....you can't have juice before surgery. So we were up. We had to get up in a couple of hours anyway so we just watched cartoons until it was time to go. 

We got to the hospital and they took us back. They did a couple pre-tests and we were ready! They decided to give Nash some silly juice before going back.  They thought it might put him to sleep but nope, not our kid!

Swimming time!

Nash after his silly juice :)

Checking daddy's heartbeat before surgery

Before he went into surgery

They let me walk back with him to the OR.  He was groggy and I was a mess. The hardest thing I've ever done. Leaving my baby's life in someone elses hands for that long. They put the gas mask on his face and put him to sleep. I kissed him on the cheek and told  him I loved him and I would see him soon! Then the waiting began.

We were in the waiting area from 8:30am to 7:30pm.  It was Chris, myself, Hattie, Stew, and Laura.(Chris's parents) They came with us to help out with the baby. We got multiple updates from a wonderful assistant named Candace.  She kept us posted all day as to what was going on. I remember it had been 5 hours already and she came out and told us Dr. Paley had 2 hours left on the hip and then would begin the knee. WOW! Just seems so crazy to me.

One of the things that was kind of awesome about this whole experience is the people we've met that have been going through what we are.  I have had conversations with a handful of families who are here for their kids with PFFD or CFD. All older and still going through lengthenings.  It's actually refreshing to be able to talk to people who understand what you are going through and are more than willing to give you advice and encouragement. One thing that I have learned as well, is that this condition can be a lot worse.  Nash's case is mild compared to what we've seen since we've been here.  For that, I am thankful. I am also thankful for the families willing to share their stories and experiences with us.  I hope to help others in the same way.  That's why I started this blog.

The second I saw Dr.Paley walk toward me I think I gasped, or held my breath, I can't remember. Either way I was excited and nervous. He said Nash did perfect!  The surgery couldn't have gone better. He was able to correct his femur bone, hip and create 3 new ligaments in his knee! I was still in shock when he asked if we had any questions, so I didn't ask any. I was just happy it was almost over. They had to stitch him up and put the cast on, which takes a couple hours.  Then he had to be in recovery for an hour.  I had ants in my pants at that point.  I just wanted him in my arms again!

After 11 hours they called us back to see him.  He was resting and had a tube coming out of every end. He was very puffy from the fluids.  I tried to talk to him but he was still out of it. The first thing he did say when he woke up was "Juice"  That little stinker STILL wanted juice!  They wouldn't let me give him juice but I could give him a popsicle, so I did.
  
We got up to his room and got him comfortable. The first night was tricky. I didn't know what to expect and everytime he woke up he seemed uncomfortable.  He had an epidural line we could do ourselves. He got a low grade fever, which is common, so they gave him tylenol. They also gave him morphine and another pain meds so he was set for the night. The hard thing about hospitals, though, is that everything BEEPS! People come in and out all night long.  I think a pediatrician came in at 3:30am, flipped on the lights and started talking like we were coherent. WOW! Then they come to do bloodwork every morning between 4-6am. Talk about a rude awakening! All of this is needed to keep a close eye on our baby so you deal with it.  And I am thankful for them :)

Day two was good. We watched movies and chilled. We met a Physical therapist and she said we could go on a wagon ride when some of the tubes come out!  He was excited about that.  He keeps saying that he's "ready to go bye-bye"  :(  Another Peds doctor came in after that and said they wanted to give Nash some blood.  He was draining a lot and his bloodwork came back and the Doctor said it would help. That took about 3 hours once they started it. I didn't see a huge difference but Nash looks good.  He seemed to feel better last night.  Bedtime was a different story.  He couldn't get comfortable and broke out in a sweat and just cried and cried.  He was starting to have muscle spasms, which are common, but painful.  We gave him valium to relax him but he was still in pain so we did morphine and he finally fell asleep.  It was less interrupted than the night before but he's still tired today.

This morning we got good news. The drain, epidural, and catheter could be removed! They came and did that so we only have an IV now.  I actually got to pick him up and hold him. Best day so far!!! It will just get better from here. Chris and I are so thankful for all your support, the prayers and well wishes.  We have the best friends and family around!! Please continue prayers for a speedy recovery for Nash.  I will keep the blog updated as much as I can.

Sleeping superhero

He wanted his siter to lay with him <3

First night after surgery

Ready for bed 2nd night