Owain's Quilt



A week before Owain's surgery  my friend Jessie (we use to work together back when I lived in Eugene) drove the two hour drive to deliver this beautifully crafted quilt....
Literally I had tears in my eyes. 
She put so much time and thought into this beautiful quilt for my little man.
A forever kinda keep sake that will be treasured,forever.
Thank you Jessie!
Thank you to Ryan,Hollie,Raynah,Nathan, Kate and Eden who contributed.
I miss all of you!
My old Oak street gang!
(Oak street child development center we use to all work together way back in the day)

the next best thing....

Before we checked out of the hospital Owain had one request "tram ".
 Unfortunately the tram wasn't running on Sunday so we did the next best thing......
We walked the Sky bridge!
Owain completely forgot about the tram .
After all the sky bridge is pretty SPECTACULAR!






OUR BOY IS BACK!



If you asked me Wednesday or Thursday of last week  "how long do your think O will have to be in the hospital?" I probably would have  replied with a sigh "  I would be shocked if we were home by  Easter"I was prepared to stay in the honeymoon sweet (sea horse room 22) for  two weeks.

After all my sweet baby boy was  miserable. Recovering from an eight hour surgery. Hooked up to monitors an I.V in his right arm and left foot. One chest tube,a Jackson Pratt drain,an epidural, morphine every two hours.tylenol every four, unable to have the full use of his left arm. Sleepless nights. Terrified of white coats and scrubs.He was  not my happy go lucky boy. He was miserable, demanding, hurting,just plain miserable. Hubs and I were feeling exhausted,helpless. We hated seeing our boy in pain. Ripped of being an active energetic two year to being confined to an hospital crib for  days. In and out of a drugged state.

Drugged,scared,confused.
Not my happy go lucky boy.
Just plain miserable.

Well tonight  I am sitting here in the comfort of  my home shocked. Home sweet home,we are! Boy! Oh boy! it feels good to be home! Little man is sleeping peacefully with his Slinky kitty curled up at the foot of his bed. Hubs is sleeping next to him on the plum colored couch. We moved O's bed in the living room for the time being so we could keep a close eye on him. With him having the Jackson Pratt drain( which has to be drained every 4-6 hours) and a sling on his left arm for at least the next two weeks. He needs to be closely monitored. We don't want to risk   his left arm wiggling it's way out of the sling. It is important with the healing of loosing his Lattissimus Dorsi (which is now his diaphragm) to avoid reaching up with his left arm. Two weeks or less he will no longer need the sling. At first I was concerned how Owain would handle only having full function of his right arm. He has handled it remarkably well. My boy is a wonder boy! We are so blessed!With everything he has been through he continues to amaze me. Amaze us.
 So small yet so strong.

In a matter of twenty four hours (three days post op)
 Our happy go lucky boy is back. Full of life. Happy.
having the desire to play, play,play and play. Being silly, Calling the nurses "wacky "
 with a devilish grin. My boy is back! Our boy is back! We are so blessed! OUR BOY! IS BACK!

  
ICE CREAM
YOU SCREAM
WE ALL SCREAM FOR ICE CREAM!
I am hitting my breaking point....

trying to be strong....

feeling weak....

hopeless...

sleep deprived....

I  hit my breaking point....

I would to anything to trade places with my baby....

Moving right along.....

With the help of an epidermal, morphine and tylenol Owain's pain has been managed. Today was the first day since surgery that he was able to rest peacefully for hours at a time. When he wasn't sleeping he has been watching  Finding Nemo (8 times in 2 days). He loves his Nemo it seems to  keep him distracted from the fact that he feels like s**t, still stuck in the same crib with tubes and wires,unable to have complete control over his left arm. He did get really pissed off when he woke up from his  three hour nap this morning kicking and screaming yelling "NO NO NO NO" reaching his arm up for me to pick him up. I felt helpless. I so badly wanted to pick my baby up. Unable to pick him up I did the next best thing hopped into his crib in the most awkward position ever and gave my little man snuggles while a sweet lady from child life played her guitar and sang some classic children's song. I attempted to sing along but Owain quickly reminded me that I can't carry a tune and told me "no". I am sure Owain wasn't the only one in the room thankful for me to stop singing.

Owain this morning watching Nemo
  
Their  have been some changes today for the first time since Monday night he was finally allowed  milk (pedasure). That made for a happy boy. He has been handling it well only a few sips at a time.He might be able to try some solid food tomorrow. Another exciting thing that might possible happen tomorrow is have his chest tube removed. This  is a huge step once that happens we will finally get to hold our baby! 

As far has us going home any time soon. I don't see that happening. Maybe a week from now or  two. It all depends on Owain and his little  body. For now we are moving in the right direction. Each baby step brings us closer to going home. Closer to seeing our happy go lucky boy smile again......

Owain happy as a clam before the sun came out (6am) the day of surgery.

Details behind Owain's surgery

So, here it is,  a little more info on Owain's latest and greatest surgery.  For any of you that are among the CDH community looking for some good solid info on the different methods used to repair a herniated diaphragm, Owain's story is full of options!  His first surgery, surgeons used a patch of goretex to fill the void of his diaphragm.  While we had hopes that he had some diaphragm to sew together, Owain had almost a non existing left diaphragm.  So much to the fact that on his posterior, there was not even a fringe of diaphragm growth to work with.  This set the stage for the following 3 surgeries.

Each time, Owian's own growth was a factor in each surgery.  Goretex is not a material that grows or stretches, so Owain's body growth is what was to blame for all his re-herniations(aside from his 3rd which ended up being near his trachea and was then plugged with goretex 2 days after his 2nd surgery).  During this most recent surgery, Owain was a trooper the whole 7-8 hours(?!).  Every 2 hours we received a call stating that "Owain is stable" and there was "Little blood loss".  This was exciting news especially since the surgery was scheduled to be only 4.5 hours long.

So what made a 4.5 hour surgery take so long? Well I am not sure if you have read any free medical journals on CDH, but there is an issue that is common called adhesion.  'What is adhesion?' you ask and how does it pertain to CDH?  Adhesion is adhesion in the root sense of the word, adhesion is a term used in reference to the large intestine mostly. After being shifted around and then settling, tiny cell structures start growing anchoring the intestines in place, adhering them to goretex, themselves, the abdominal cavity wall, and so on and so fourth.  This made it difficult for the surgeons to expose the area they worked with before.  So very painstakingly they got everything out of the way so they could start the MEAT of the surgery.

ENTER LATTISSIMUS DORSI

For this surgery, we were expecting on the surgeons using the same thing as last time(goretex) with the addition of a new material called Alloderm which is a human derived cellular lattice which allows excellent tissue integration.  We then read about Sofia Miller having a muscle flap used as a replacement for the diaphragm, which we inquired about.  Sure enough after asking our surgeon about it, he brought in a plastic surgeon to consult with us.

The goal of this operation, was to completely cover Owain's defect with is lattisimus dorsi muscle.  Sure he will be missing a muscle, but the benefit of not having a surgery for a really long time makes definitely advantageous for him.  They also were aiming to attach the main nerve supply that is usually connected to the thoracodorsal to the phrenic nerve that controls the diaphragm.  Unfortunately they were unable to make the connection since they could not find the phrenic nerve.   Instead they tunneld the nerve ending through the right diaphragm in hopes that electrical signals would eventually be received by the main lattissimus node.  This type of nervous integration might take up to a year.

They also used AlloDerm as a buttress to the muscle itself to keep it from tearing. They also left all the other repairs in place as well.  So Owain has a literal repair sandwich for a diaphragm.  Goretex on the bottom(Which tissue integrated extremely well we heard), AlloDerm in the middle, and lattissimus on the top.

We are all glad that Owain now has a diaphragm that will grow with him.  What a trooper.