Our family's journey through life

Two weeks ago we  left the hospital  with a  our sweet little  boy.Six days after he endured his fourth  and longest (8hrs) surgery.On bed rest for the first three days post  op, a not so comfortable chest tube for three days an epidural,morphine, Tylenol round the clock.Bed rest. A Jack Pratt drain. Sleepless nights,watching animated show after another, ice cream,wagon rides,bubbles,coloring. We were saying good bye to the hospital. Again.Days before we anticipated.  We were stepping foot off hospital grounds with our sweet (stronger than most adults I know) warrior child wearing a lovely hospital gown courtesy of Dorenbecker Children's hospital. His left arm still in a sling. Holding his daddy's hand with his wright Owain not so gracefully jumped out of the elevator JP and all. Yes! He jumped!

 Blessed, we are.

 At home Owain continues to amaze us.After only being home for two days spending his day watching our own animated cartoon shows with Slinky and Nemo in the comfort of our living room.

We spoke with Dr.L (plastic surgeon). Great Doc. He was pleased with how little of an out put his new friend JP was putting out. He told us to come into the office that very day!It was time to say goodbye to good old JP. A week earlier than we anticipated .Owain wasn't to happy about the quick yet unpleasant process of saying goodbye to JP.He recovered quickly with some Mickey Mouse stickers.

Our boy continues to amaze us!
Blessed,We are!

Having JP out of the picture Owain continued to recover remarkably well. He spent less time in front of the t.v. Having the energy to play he helped daddy build a tent out of his old tapestry from his college days.They hid from mommy snacking on some tasty pepporin and cheese.

Blessed,We are!

By the sixth day of being home Owain no longer needed his stink'in sling.A week earlier than we anticipated.  He was back to feeling like his young energetic self.Running,jumping doing tricks (twirling while jumping) Flying like a bird. He no longer needed pain medication.He was feeling pretty darn good. Better than I did after my C-section. Truly amazing.

Amazing.That's our boy!

Ten days after leaving the hospital Owain was well enough to play at a neighborhood park. With Friends.

Our boy continues to amaze us!
Blessed, We are!

Thankfully for days like these.

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!

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....

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.

  

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.