Surgery Day - surgery

Cav really has been doing great lately with food (another post I promise)

Anyhow when they called on Friday and told me we had a noon surgery I thought it would be fine.

Even now I'm not sure if it was the food or walking into the hospital - although we love Children's.

Regardless, we got to the hospital at just after 10 and just about the time we get to the elevators I look down at him in is wheelchair and his face goes to glass.

Someone called it the survivor stare.

No matter what I tried, he didn't get out of the mood.  And oh yeah surgery was delayed an hour.

Which I never complain about since his surgeon became an expert on amputations because his primary job is as a orthopedic oncologist.  Frankly, we are blessed.  I would never rush this main who just might be saving a child's life, or comforting a mom who didn't have the luxury of choosing a child who would become an amputee.

Luckily, the anesthesiologist we got was amazing - he came in - pretend wrestled Cav (who I was afraid was going to cry but then snapped out of his funk and tried not to laugh.  Oh yeah this man kept pretend farting on him too.  I felt like I was with an overgrown 15 year old!!

We love him, he is perfect and his specialty is achondroplasia so---- we got his card LOL!  You know just encase but I really am about done with surgeries for a lifetime LOL!  I realized today in 18 months we have had 6 fairly major surgeries on 9 body parts and to many casts to count.

Anyhow, I got to spend the last hour of our wait with a happy smiling boy, tool him back to the OR and he went right to sleep without that guttural fight or flight response he has had before.  So proud of him!

I also discussed with everyone who came into the room to make sure to over drug him right after surgery, as he usually needs enough drugs to kill an elephant for pain.

And you know what THEY DID!!

PLUS< they put a block into the area!

So we ended up waiting on the nurse to scoot out of there, by the time he woke (about 10 min in recovery) he was wanting to go HOME!!

All of the other kids called him and face timed which he also loved.

So, he is now playing with the little boys, and so far so good.

I am insisting he stay home form school tomorrow although he is raring to go LOL!

As a side note - I have to say I love how God works.  His surgery is the same exact surgery they do one the dwarfs who have bowed legs.  They get the 8 plate surgery and we had a 2 plate surgery.

His doc will monitor his growth and eventually the plate and screws will need to be removed.  But let me tell you how amazing this man is.  He sutured it in a way that there is NOT a know at the end of the suture inside which might affect Cav's comfort level when he puts on his prosthetic leg in a couple of weeks.  The glued the outside of the incision so he could go into the bath.

We are praying that he will be able to comfortably wear his prosthetic and that the plate and screws are in an area where there is a little opening (because of how his fibula grew) and we don't have to have the prosthetic reconstructed.

I walked in and was horrified that Cav was on the floor -
Brahm apparently picked him up even though Cav outweighs him be 5-7 lbs LOL!
(oh and the child is denial about the pats LOL)

Cav's surgery

Tomorrow is Cav's "surprise" surgery to place 2 screws into his growth plates on the outside of his longer leg.  THis will allow the inside portion of his leg to continue to grow and hopefully straighten the tibia a little bit.

We are praying it will at least buy us some time.  Selfishly, I need the time until we get Dawson home and settled.  But also time for Cav.  The kid we anticipated would need one surgery once home is going into his fourth in two years.  And truly I know lots of kids who have gone through way more - but oh my momma heart breaks for him each time.

In addition, the recovery without a prosthetic is only 2 weeks with this surgery.  If he has to have another osteotomy (break the bone in 3 pieces and put a rod through it to straighten it out) - that's 8 weeks alone int he cast.  The poor kid already went through this 18 months ago ugh.

Lastly, he is finally getting to a point that he cares - he is self conscious about not wearing his legs.  Mind you this is the kid who puts them on when he gets up and takes them off at bedtime.  On weekends if I don't give him socks then he will go without around the house but he truly has never fought us about wearing his legs.

In the orphanage, they obviously pulled on his little feet, and taunted him.  All he ever wanted was shoes. . . even two years later I think this is still very important to him.

So please will you pray for him, for his little heart.  We tried desperately to get him able to walk with forearm crutches.  His hands are just to weak, and we have made the executive decision to only use his wheelchair.

I pray this is the right decision, he would need to stand on his full prosthetic leg which means standing on a gravity driven prosthetic knee.  Using hands that will never have the strength of "normal" hands.  Fall after fall he would get up as he practiced around the house (even though we went to 2 and 3 PT appts a week to get him where he could use the forearm crutches.)

Anyhow, please pray that the other kids don't make fun of his legs (his teacher will talk to them the day before he gets back.)  We have fun socks for him, and his wheelchair is super cute with a teddy bear "footplate".

Doing surgery once again now 2 years home does have it's advantages.  We have always scheduled early morning appts because of the food issue.  Dare I say, but I think he is past the HUGE food issues he has had (Can I get an Amen!!)  We talked extensively about his not being able to eat in the morning - and he got special McDonal's tonight so praying this is one less thing we have to worry about.

Surgery is tomorrow (Monday 1/20) at noon MST.

8/2012 in his teddy bear wheelchair

Detour

I thought I finally had it all together - we scheduled Cav to get his new legs made in Nov (you know so it would fall under our already met deductible).

Getting his leg casted for new spiderman legs!

His prosthetist suggested we make an appointment with the amputee clinic for the same day . . . and we were able to get in which was our first God sighting (and I probably should have know something was up LOL!)

I can't remember if I have mentioned this hoopty walk Cav has developed.  We first noticed it shortly after getting his arm casts off in April.  We thought it was either a bad habit or the weight of the casts had somehow changed how he felt his center of gravity was.

It just became more and more noticeable.  Our PT thought maybe it was his hip and core strength.

Heck, even the PT at the amputee clinic thought the same thing.

Yeah it took our fabulous orthopedist one look and he ordered x-rays.

TO catch newer people up Cav has Tibial Hemimilia - they were able to save, and straighten his tibia when he had amputation surgery - summer 2012.  They did this by chopping the tibia in 3 pieces, and placing a rod through it - which also meant 8 weeks in a cast which lasted 10 days before he had to be recasted - it was a VERY long summer.  We were warned he would need another osteotomy in the future but it was my impression it would be closer to middle or even high school.

NOT 18 months later.  I just wanted to cry, I was sure I was close.  When we accepted Cav's file, I read as much as I could.  I never saw anything about curving tibia's, continuous surgery AND we had no idea about the mild radial club hands or neglect, or sensory or, or, or.  My heart breaks for this kid.  God, he just needs a break - I prayed right there in that room.

They decided to do another x-ray because he hyperextends his knee backwards.

Even as a nurse I don't quite get how this makes a difference and really I DON"T CARE!!

AS I looked at the surgery schedule I realized a January surgery (the soonest he could do (heehee so much for our deductible.) would put Cav in a cast until MARCH - oh no March is when I am supposed to be getting Dawson (you know because you can plan these things LOL).  Of course he would have to be recasted for new legs after getting his cast off, and this would be another 2 weeks at least ugh

GOD I CAN'T DO THIS I WANTED TO SCREAM!!

And then we received HIS blessing.

We still have surgery scheduled for January 20th, but they are only going to do a 2 plate (usually you hear 8 plate surgery) where they place screws and a plate into the growth plate on the outer side and let the inner grow until it evens out a bit.

The second x-ray bought us time.

He will still need the osteotomy within the next 2 years.  So please keep him in your prayers.  He asked if we were going to take the rest of that leg.  We assured him we weren't and it wouldn't look any different.  But my heart breaks for him - he meets every challenge head on and I know he will do amazing but it's a lot.

He will be 2 weeks without his prosthetic.  They think he should be able to use forearm crutches (mainly because the weakness in his hands.)  THey will lock the prosthetic knee and they think he will be fine.  PLEASE specifically pray for no snow or ice during the end of January.  We do have his wheelchair (and scored the next size up at goodwill last night for $30!!) but the concern is without the physical activity his sensory issues will raise it's ugly head.

For those who are freaks like me here is the second x-ray.  You can see the pressure indent just above the white circle.  This shows how the forces of his leg and alignment are off and how much his center of gravity is off (I think that's right.)

Tao's surgery

First I have been asked and I am sure I have not clarified here.  Stinking baby goes by Tao - he knows his name is also Griffen however he won't answer to it.  If you ask him if he name is Griffen he says "Nooooo, I TaoTao."

You would think with 5 surgeries in one year - several being major - I would be used to this.

But as usual I had my crying pity party this morning - as in ugly cry in the shower.  Woke up and was freaked, so much so that my husband called the Pastor to confirm that encase something happened to our sweet angel he would go to Heaven.

Stinking Satan found a crack and split it wide open LOL.

It was his stinking dimples that did me in - the ones we never knew we had until we were sitting in China with our poor scared little guy and my goofy 14 year old made him giggle despite his fear.

THose gorgeous unexpected dimples showed and I remember the world standing still - until I scared him again and he cried LOL.

And this morning - I allowed stinking Satan in and all I could think of is never seeing those dimples again.  That and could I really be so lucky to have 5 surgeries and no complications?

And it is so stupid - yes he is high risk (dwarfs are very high risk for anesthesia until they are about 5.)

BUT Denver CHildren's let me hand pick his anesthesthesiologist (the same who did Fei's surgery.)

Anyhow, got over my self.

And then had a fabulous day with my little man.

We had orthodontist appointments for the 3 oldest.

Tao was fascinated - and Tristan was his usual awesome self letting the baby

sit on his lap while they took an impression!

THen we took Cav & Fei to school and the big kids conned me into a sit down lunch

(we try to do the orthodontist over lunch time)

Love these two!

Then we dropped Morgan off at school and the boys conned me into playing hookie the rest of the day

So we went and got haircuts!

Heehee I think I am becoming soft in my old age LOL!  Good thing it is the end of the school year!

Please keep Tao in your prayers in the morning.  He is jsut getting his extra thumbs removed and possible the same tendon transfer Cav had (because really God has a sense of humor LOL!)

Surgery

Wow, we are home, rested and reeling.

You know when you plan in your head how things will go AND THEn, that is not really reality.

Cav was scheduled first thing in the morning - to avoid any food deprivement issues and he did great.

We had a fabulous nurse who I had already talked to about Cav's story.  I knew we were at that particular surgery center to meet that particular nurse because God needed us to be.  I hope someday to find out how HE has used our sons journey!

We took Cav in his PJ's so we didn't have to deal with the legs issue - daddy carried him in and we left the legs in the car LOL!

That's where the fun began, cuz a double amputee having surgery on both hands leaves . . . yeah doesn't leave a place to secure his ID band!  Finally, I told her his short leg still has the condyles and that she should be able to put the band on there.  Placing an IV left even fewer choices LOL!  I knew they had a rough time when I saw him in recovery and the IV was in his neck.

We took pictures of his hands,

talked to a thousand people (my husband who usually doesn't do surgery wondered if they thought the answers were going to change LOL!)

and then took him back to the OR.  

THis is where we saw the fight in him that helped him survive the orphanage.  SO heartbreaking, but the anesthesiologist was incredible and compassionate.  I quickly whispered to him that his soul has worth and that he was loved.

Recovery - well that was heartbreaking.  We kept telling him he had a family and that we loved him.

But he was panicked and we couldn't figure out why.

Then my super bright husband realized it wasn't his fingers he was worried about - it was his legs.

After we showed him his legs were the same as when he went in he calmed.

The kid required enough pain medication to kill and elephant.  They weren't going to let him leave. 

I finally said - look he is coherent, and awake.  I pulled out my nurse card as we still had to drive through Denver and didn't want to get caught in Friday rush hour traffic.

As we were leaving everyone kept mentioning how we were going to meet the storm.  I was more worried about someone barfing in my car.

Then I got home and it clicked.  My Aunt still needed to drive back home to catch a Tues flight to see their brand new grand baby.

It took an hour to pack her up, gas the car and send her on her way.  We were sad to see her leave but thrilled that she would beat the storm!  Please keep her in your prayers as she drives the rest of the way today!

And in typical  Cav fashion - he figured out how to feed himself.  I was crushed to realize that he didn't wake me or Brahm (we switched him into BRahm's room so he could come get me if Cav cried out) but went downstairs to sleep on the couch.  I pray he will learn to accept our help through his month in casts - although he is already more independent than i had thought!

His hands

Our journey is coming full circle,

AND I didn't even see it sneaking up on me.

Regardless of age,
when you meet your child for the first time (ok maybe not the big ones LOL)
you look them over,
counting fingers,
toes,
learning about them,
the uniqueness of your own child.

But sometimes that discovering comes with great sadness.
It wasn't the 9 toes
or the misshapen feet.
We were ok with the knee that just hung.

But the hands
oh his hands would become the catalyst to some of the hardest days in my life.

Those hands that were odd,
a thumb that looked like a finger
thumbs that were jsut as wobbly as his knee.
ALL unknown to us.

I spent hours on the internet researching
in the fog I remembered that 4 limbs affected = a syndrome.
And the scars
and the bruises.
In the dark days of China
I worried of syndromes.

I now realize that without the hands
we would have been in a very different place
with him.

Would we have bonded faster?

And then home,
hands that didn't function,
unable to push a wheelchair,
or a walker.

Hands adapted to a raking grasp
instead of pincer.

And many Dr's all with different answers.
A year, 5 diagnoses.
and FINALLY an answer.

Tomorrow we fix those hands.
A journey of 15 1/2 months
And a lifetime of soul work.

THis is not a misprint, you can see the thumb muscle lacking,
- the long finger like thumb
- The extra space between his first two digits.

Cav is horrified! (funny)

You know since it has been a whopping 4 days since surgery Cav has wiggled out of & destroyed
his leg wrap from his longer leg (that has been in a cast all summer) LOL.

So we figured we might as well take it off and wash the little stinker since he was busily scratching the part of his leg he could reach - raw!

I started unwrapping and then thought to pull, yep it slid right off!

So these are the pictures of him looking at his leg for the FIRST TIME! (sorry for the crappy cell phone pics I didn't actually think this through before pulling the wrappings off!)

Now the above pics might make you want to cry for him until I add the little bit of information that infact he was horrified by the fact that his leg was covered in 

LONG DARK HAIR!!

That's right folks, he was fine with the amputation -

 infact he asked if he was getting his legs so he could run like Oscar!

But the 'side effect' of the surgery (can't remember if the Dr said tibial osteotomy or amputation) but sometimes they see rapid hair growth!

And my sweet boy was HORRIFIED!!

Rockstar

Cav's day started out pretty difficult. He was unable to keep anything down so we delayed pulling the epidural. Just a few short hours later we discovered he had wiggled so much in bed that the covering over the epidural site has come up. The only option was to the epidural - no weaning, but lots of prayers

Then as we waited for the pain team arrive - Cav looked at me and said 'Ma, I hungry!'. Yeah! He did great the rest of the afternoon. We are experiencing some pain but I won't let it go untreated.

Again this kid amazes me - we got his wheelchair and this is first attempt using it and he is a rock star!!

Recovery

These are my thoughts - documenting this journey - I am not even sure if they are worth posting but I want to keep them for when Cav is older. I finally got called back to the recovery and I was amazed, not only did I recognize my child svoice, but he was screaming mommy! Music to my ears. I was able to sit by his side and comfort him, to dry his tears. In the brightly lit room surrounded by strangers and equipment I was his oasis. He cried loudly, his little leg owied and then the words that stung the most. "put my leg back." Finally, more drugs and he is sleeping. I sit in the quiet of an almost empty PACU, I find the beeping monitors strangely calming. Probably from years of working in the NICU. Waiting for the morphin to wear off,but glad he is sleeping, no longer aware of the pain his body is experiencing. It saddens me to think that for the fortunate children who receive surgery while still in china, few have someone at their side. Although we are not people who like to be the center of attention, cav's adoption seems to affect others - ordinary people. Even here in a hospital where the hallways are filled with children of varying special needs, Cavand his story is touching people's souls. How many times have I repeated that we are just ordinary people. I do wonder the results of his story though. Is this the heart you were meant to change. How will your story play out, years down the road. And then it comes full circle to one family saying yes to one little boy. How many other children will God use . . . Today, this week, this year. How many other families will see past the disability to the path of faith they are meant to follow.

Amputation surgery

It is 11:30 and i sit here embarrassingly at peace. I even questioned - is it because Cav is adopted. To some extent the answer is . . . Yes. But not because I love this wild child any less than my other children. But because as I laid him on the gurney I felt as if I was laying him into God's hands. This child in particular has always been His - it still amazes me a child who meant nothing in his homeland has had such a dramatic impact on ours. As a side note - cav's little leg was already gone by our first call from the OR at 10. As I was typing this they came out and are just now closing on his second leg. I believe he has ended up with a - Through the knee amputation on the right A Symes amputation on the left And a tibial osteotomy on the left. The left will be casted and we think the right will have a pressure dressing. And now is the calm before the storm. We have been receiving texts, calls, and messages from all over the world today - THANK YOU!

God's timing

As I watch this child sleep in a huge hotel bed just across the street from Denver children's hospital - and of course the quietness of having just him, I realized something. Yet again I must marvel at God's perfect timing. Almost four years to the day of his finding he will have surgery. Four years ago as I held my sweet little 1 year old (Brahm) another mother spent this week fretting over her tiny babies deformed legs. Although we can romanticize the story, truthfully I have very limited information. He was about a month old He was found in a chair in the hospital He was listed for international adoption at 16 months We sent LOI in on his 3 rd birthday He will have surgery 1 week to the day of when he was found. To a child who's birthday is most likely not even right, the date if his finding is huge. He survived and in Cav's case his mother took an incredibly risk to ensure he was found quickly, and would (I am sure she hoped) receive the care she could not afford. As a side note, we were able to find a molding kit for at least his little leg. This is his foot with only 4 toes, and completely non weight bearing. I hope when he is older and questions his path we can show him a small glimpse of what came before. Of course Brahm came up with the idea. As a final note - I spent so much of last year with people questioning how adopting would affect our children. I have never been prouder of them. Even our biggest gave him extra hugs before going back home from the lacrosse tournament. We have always explained to them that this is God's plan and it is a wonderful first step to him walking. But their compassion for a child they truly just met astounds me.