Movin up and out...and back home!!!

It was Saturday morning and we had packed all of our stuff and moved to a condo about 30 miles south of West Palm Beach in Boca Raton, FL. Our friends Tim and Kori Shane let us use their time share for our trip.  We could not be more thankful because it was a beautiful place right by the ocean!  Plus it was HUGE!! It was 3 bedrooms and 3 bathrooms and very spacious.  It was perfect for us for the rest of our stay.  The hotel was nice and close to the hospital but it was pretty small for all of us.  This place was much better!

Grandpa Stew and Grandma Laura were only there for one more night so we wanted to have some fun before they left.  We walked across the street and went to the beach. It was nice. We didn't stay long though.  It was hot and with Nash in a cast....he was very uncomfortable.  When we got back to the condo, Chris's parents told us to go to dinner.  They wanted us to have at least one meal together :) It was nice. We went to a place called The Whale's Rib.  It was featured on Drive-ins, Diners and Dives.  It was sooooo good! Fresh seafood...YUM!

We got back and both the kids were sleeping...yay!  Unfortunately, it didn't last long. Nash was up and down all night and Hattie woke up every time he cried. (Otherwise she sleeps through the night)  Nash isn't a very good sleeper anyway but he was in pain so it was so hard for him to be comfortable...day and night.  The next morning we had to take Stew and Laura to the airport.  They had been with us for a whole week and I don't know how we could have done it without them.  It was evident how much they helped after they left because we were SO BUSY! Chris and I tried to take shifts with Nash. We alternated nights with him and Hattie in separate bedrooms.  Just when we thought we had it figured out...something would change.  Nash's medicine was hard to time out for his pain and bedtime. Our whole schedule was off.  We do better with a routine but we just had to face it that we were going to be exhausted for now...period. Some days were better than others and we made it through :)

On our way to the condo!

The beautiful beach

Dippin his toes in

learning to army crawl

Tummy time with Hattie

Monday was our first appointment with the Physical therapist and the doctor. When we got to PT, they removed the cast so we got to see Nash's incision for the first time.  I wasn't expecting to see such a big incision...It was about 12inches long.  I keep trying to tell myself that scars are cool for boys....but the mom in me just sees that her baby's skin isn't perfect anymore :( It was hard to look at but it was good to see that it was healing nicely.  The scar will be minimal I think.  After she removed the cast she did some stretches with his hip and knee.  We tried to distract him so he wouldn't notice the pain but it was pretty intense.  When she was done with that we went to the casting room where they removed all the old padding (that was stinky and gross) and put new padding on with velcro straps so we could remove the cast ourselves.  It was pretty nice! We could even put a diaper on under the cast so we wouldn't have to deal with leaks anymore. PHEW!!

Our appointment with the doctor was at 5pm that day.  However, when we got to the waiting room, it was even more packed than the day we were there for pre-op!  We checked in and got comfortable in the hallway.  We met some new friends and their son Jordan.  He is a year older than Nash and was there for his first lengthening.  They were pretty close to being done and ready to go home. Florida is nice, but a couple months away from home is hard on a family.  We got to talk to them a lot that day and asked them lots of questions. It made our wait go by much faster. We waited  for 2 1/2 hours!  Dr. Paley had a patient in Canada who broke his femur. He was on a live web-cam with the surgeon there, guiding him through the surgery....what a guy!  How can you be mad at that!?

When they finally called us back, we saw a PA instead of Dr. Paley.  He checked Nash's incision, answered a few of our questions and gave us the green light to go home! We had 2 more PT appointments the next 2 days. They taught us to do the stretches with Nash so we were able to do them at home ourselves.  We were excited to be able to go home as planned.  This whole surgery went very smooth.  Hopefully the healing process will be just as good!

The incision

By the time Thursday morning came and we were packed up and ready to go...We were READY TO GO!  We made it to the airport on time and both flights were smooth and the kids were great.  We timed out Nash's meds perfectly and he did so good on the airplane!  Hattie slept through both flights and Nash slept with her the second one.... From airport to airport!! When we landed in Cedar Rapids, IA I don't think I have ever been so relieved, happy, excited, and exhausted in my entire life!!  We made it!! We did it!! Nash is one step closer to the goal!!!!  All of our planning and worrying and traveling was done!!!! Hooray!!!!!!

Sweet angels

So the plan is...Nash has to go back in 3 months for a check-up. Then Dr Paley wants to see him every 6 months until the next surgery, which will most likely be his first lengthening.  I say 'most likely' because his hip has to heal properly before he will start the lengthening process.  Please pray that it does!! (Our friend Madi in Des Moines just had her 3rd hip surgery. She is such a trooper!)

Since we've been home, Nash has been doing great.  Grandma Donna and Grandpa Hank (my parents) came to stay with us for a couple days to help out.  Nash loves having the extra attention and is being spoiled rotten!! We even made a little contraption for him to sit upright so he can play and not have to be laying down.  It's not fancy but he seems to like it :) He's such a strong little guy and continues to amaze us every day.  There is nothing I love more than to see my kids happy, so every smile is a success in my book!!!

Thanks to everyone who continues to keep us in their thoughts and prayers. We still have a long road ahead and your support means the world to us and our little super hero :)

Eating sweet corn with Grandma Donna

Our contraption

SMILES!

Nash's 'Al Bundy' pose



Hangin out with his favorite little sister :)

Happy Birthday! We're outta here!!

The 3rd day in the hospital, Nash woke up and said to Chris "I watch football, Daddy??" Chris was thrilled  because it was a Thursday and just happened to be the first Packers pre-season game! Nash had no idea but it was so cute :)

After he had all of his cords taken out, we got to go on the wagon ride. We took a trip to the hospital gift shop so he could pick out a toy.  We told him he could have anything he wanted.  We showed him every stuffed animal and he wasn't interested. We looked at some games but he didn't seem to care. Chris turned the corner and Nash spotted the perfect toy....a FOOTBALL!! He spotted the baseball, basketball and soccer ball too...so we got them all. After all, it was his birthday the next day!

We kept Nash's pain under control all day and he was even eating a little better.  He was feeling good enough that I felt comfortable leaving for the night to go to the hotel and get some much-needed rest.  I came back first thing in the morning and he was all smiles, hangin out with daddy.  It was his 2nd birthday!! I got there just in time to talk to the doctor as he was making his rounds.  He gave us the wonderful news that Nash could be discharged!!!! HAPPY BIRTHDAY NASHY!!!

After the doctor left, a group of ladies from Child Serve came and put up a "Happy Birthday" banner for Nash and gave him a bag FULL of toys.  He loved it! They sang to him too :) Then a little bit later there were 2 ladies with puppies that came to visit us.  It was so fun! Our friends sent Nash a 'Super Nash' backpack and birthday monkey.  He also got a big teddy bear and balloon, birthday cards and some other cool toys. As we were leaving the hospital, there were 2 carts full of toys from a generous business man who buys toys for all the kids in the hospital, so we got to pick out one more toy before we left.  Nash had it made!!

We left the hospital and went to the hotel. Gandma Laura, Grandpa Stew and Hattie were waiting for us when we got there.  We enjoyed the rest of the day and evening. Nash played with his new toys and was adjusting to being out of the hospital.  Keeping his pain under control was tricky and he didn't sleep very well that night. We could tell it was going to be a rough road ahead...for all of us. Thankfully we had each other. We moved to the condo that day and stayed there the rest of our time in Florida.

Puppy visits

 

Watching football :)

Wagon ride

We're outta here!! Happy Birthday Nash!

 

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

Airplane rides and Pre-op cries

We left Cedar Rapids on Sunday, August 5th. Nash was very excited  to fly on an Airplane! We had a layover in Atlanta and arrived in West Palm Beach, FL around 6pm. The kids did great on the trip but by the time we got our rental car, checked into the hotel and got settled, they were ready for bed.  They didn't want to go to bed, but they were ready!

 The next morning we got ready and had Nash's pre-op appoitment at Dr Paley's office at 9am.  It was pouring rain outside! Nash was in a great mood. We all were because we finally made it here.  After about 45 minutes in the waiting room we went to see the pre-op nurse.  She did her tests and Nash started having a meltdown.  After we calmed him down she then told us she had to draw blood, too.  Watching that gave me a feeling I never want to have again.   He was so upset I had never heard him cry so hard :(  Not to mention she had to poke both arms to get enough blood! Ugh!

Then we went up to Dr Paley's clinic for x-rays and a consultaion.  Since it was what they call "Superhip Week"  there was a FULL waiting room. I did not pack a diaper bag big enough for this waiting line! We were called back for x-rays and Nash did good. While we went back out to wait,
Hattie started crying. Caroline, one of the gals that works on Dr Paley's team, (who by the way is wonderful and I couldn't have planned this whole trip without her) came up to us and told us it would be a while so we could go home, nap, eat, and come back later. We were relieved!

We came back about 4 hours later and the place had cleard out considerably.  We had our meeting with Dr. Paley and the other surgeons who were there to watch the surgery. (3 or 4 other surgeons
I believe)  He explained what he was going to do, briefly. Nash was one of 2 surgeries he was doing the next day. He said the Super hip sugery has more "steps" than any other surgery he knows of. Crazy! He was very confident that it would go well and seemed kind of excited. So we were all set! He knew we were from Iowa, too, and said he always wanted to come to Iowa and do Ragbrai. We thought that was funny that he knew about it. He's the type of guy that will probably do it too!!

Leg before surgery

I wanted to post a couple pictures of his little leg before surgery.  We're anxious to see the difference of the "before and after".  The first surgery is the hip reconstruction but I've heard its a pretty big difference!!  

Today we had Nash's MRI of his hip.  It was a 3 hour process and he was under sedation so he wouldn't move.  The MRI pictures Dr. Paley requested were VERY specific.  (We were told that more than once) I guess that's a good thing!!  He wants to be detailed with his surgeries and that's good to know.  Nash came out of sedation pretty well. I guess it got us ready for the long surgery on Tuesday!  Please keep us in your prayers... especially Nash.  I know he will be in good hands, though. I will keep the blog updated as much as possible while we are there.  Wish us Luck!!!

Doin a dance!

Here you can see him walking around (and showing off his dance moves) without his shoe on.  This is how he usually gets around at home. It's a perfect example of how kids can adapt to anything. We just love to watch him play :)

Walking with Shoe Lift

Just a little video of how Nash walks before the Super Hip surgery.  He is 22 months here and does pretty good! He loves his golf clubs :)