Second Surgery.

 

{on our way up to MN}

Well Sam had his 2nd surgery on Monday January 23rd, 2012.  We drove up to Minn. on Nicks 32nd Birthday {1/21} - this time rather than on Sunday.  We wanted to take the kids to the Mall of America to get them something special - that way it's not ALL about surgery.  When the weather gets warmer we will be able to do fun things!

Speaking of weather - there just so happen to be a blizzard going on the day we left.  Go figure.  Hardly any snow all year and the one day we have a 4 hour car ride, we have -18 degree wind chill and blowing snow.  But we made it safely - even though most of the 60 was covered in snow that had blown over.  A little scary at times! 

On our way to the Phillps Eye Institute for surgery Monday am, it was snowing like crazy.  Of course.  Minneapolis traffic on a Monday morning at 7am plus snow falling = TWO HOURS LATE FOR SURGERY!!!  Luckily, they totally understood, and didn't really effect his surgery time at all.  Just bumped it back about 30 minutes.  It took us a little over an hour and a half to go 20 miles.  Yeah.  Griffin had just woke up 30 minutes before we got in the car, and went right back to sleep for an hour! :)  That was awesome.

 

This Charlie Brown statue is right inside the Phillps Eye institute.  The boys thought he was pretty cool.

 

Sam got to wear stickers on his cheek this time, rather than pen.  They tell the Dr. which eye she is examining and which eye she is doing surgery on so no mistakes are made.  Sam was a little sleepy to. :)

Griffin wanted to take a turn sitting in the hot seat too!  The boys really are bored going there.  I mean they do really well, but 4 - 5 hours is a long time for little kids to hang out at a NON kid friendly hospital waiting for their brother to be able to go home.  Its right in the middle of Griffin's nap too.  Griffin is usually into everything he should be - like trying to put his hand in sharps containers, digging in the trash can, going into other patients recovery rooms.  Yeah.  It's a BLAST.

 

Playing the usual Angry Birds, or Fruit Slice just before surgery.

 

This is Dr. Choi.  She is our anesthesiologist.  We love her.  She is just amazing with Sam.  This time Sam wasn't scared.  Of course the eye drops sucked - but going back to the OR, Daddy got to take him and Sam didn't even cry when they put the mask on his face.  He also put the pajamas on with NO FUSS!!!  YEAY!!!  Nick said Dr. Choi even made him giggle while breathing in the medicine from the mask!  This is a HUGE improvement from last time!!!!  Yeay for Dr. Choi!!!

 

Getting ready to go back to the OR.

 

Sleep wonderful my sweet baby Sammie.  Daddy taking him to the OR.  I think this was actually harder for me then taking him back to the OR last time.  Something about not being there just got to me.  But knowing how well he did, made it a little easier. 

Sam did wonderful during surgery.  Dr. Quiram said she is really pleased with how his eye handled the first surgery.  There was less leakage behind the eye, and more improvement.  She even thought the retina was beginning to reattach on it's own.  She didn't put any steroids in his eye this time, so the swelling was pretty minimal.  And the white part of the eye is hardly swollen.  Over all it looks much better this time around.  

She has been putting a drug called Avastin in his eye.  It's a drug used on cancer patients that prevents the growth of new blood vessels.  So she is putting it in his eye to prevent the growth of any new blood vessels behind his eye.  Long term - hopefully there will be no new leakage from these new vessels that have developed.  She's really please with the success of this FDA approved drug, and so am I!  Sam has to go back in 6-8 weeks for surgery number THREE.

 

Our ride home.  Sam is on the left, hiding under his blanket.  He did this the entire way home.  He cried almost the entire way home that his tummy hurt too.  I felt horrible for him.  I just kept saying - please don't puke in the car - please don't puke in the car!!  And thankfully he never did.  I think he got more Fentanyl this time and it hurt his tummy.  Poor little sweetheart.

 

Our ride home was just as bad!  Blowing snow!!

We made it home in about 3 hours and 45 minutes.  Not too bad given the bad weather.  Sammie was just feeling really sick to his tummy, and wouldn't even open his eyes at all.  He wanted to lay down the whole time, but he did request some cheese its. 

The other boys were really good during the drive and trip too.  Of course they get a little bored.  But overall it was a great trip.  And our hotel was amazing.  Hopefully when we go back in March everything turns out even better!!

Bored.

It's the middle of January, and the kids are sick of being inside.  Griffin is mostly sick of having the gate up, and being trapped upstairs.  He's getting to be an excellent stair climber.  He can now climb with no supervision...which is relieving.  His brothers will run downstairs and slam the gate in Griffin's face, leaving him crying upstairs. :(  I think I am just going to take the gate down.

 

Ethan showing off his dance moves

 

watching cartoons

 

he's found the tupperware

 

Sammie waits ALL day for Ethan to come home just so they can hang out together.

Chapstick.

Santa brought the boys some chap stick in their stockings this year.  Good flavors too...like Life Savers and Air Heads.  Well Sammie put some on, and it looks more like lipstick then chap stick!  Ha!  He loves putting it on his cheeks too...I'm surprised those aren't red as well! ;)

Two weeks later...

Well the recovery process has been pretty icky for Sam.  He requested Tylenol for the first 2 days, saying he eye hurts.  I was a little worried because the Dr. had initially told us it wouldn't hurt him as there isn't much nerve endings in the eye.  In contrary to that, I have read about adults having cryotherapy to their eye and it hurt "like hell".  So were just trying to make him as comfortable as possible.

He doesn't like the fact that his left eye is still swollen and closed.  He looks in the mirror and totally knows something is different and not right.  He looks at himself, then looks at me and says "Mommy, only one eye open, I want TWO eyes open!"

Sammie has really been a trooper through all this though.  I am just SO glad we don't have drops or anything like that.  I don't think I can stomach fighting him to put something in his eye when it looks how it does.  I tried to get some close up pictures so you can see how the white part of his eye is so swollen that's it's higher than the blue part of his eye.

It's been "draining" a yellowish liquid.  Which I guess is normal, as long as it's not green.  I just worry a little that we don't really have a follow up appointment - because her office is 4 hours away - but I don't know what it's supposed to look like, or whats "normal".  Pretty much looks like raw meat.  Is your stomach churning yet!?!?

The red mark you see above his eye brow I believe is from the tool they use to keep his eye open.  I think they maybe had it cranked open pretty hard in order to be aggressive like she said she was.  I thought it was going to be a scar, but it ended up going away.

All in all, Sammie is just a happy little guy.  He is handling this so much better than any adult would in my opinion.  It took two FULL weeks for his eye to look any better.  The swelling lasted about 10 days, but the redness in his eye was 14 days.  I was scared to take him out in fear that people would think I beat him and gave him a  black eye, so we pretty much just hung out at home.  I am just thankful he will be all better just in time for Santa!  Love you Sammer!

First Surgery.

The day had finally come!!

Although it feels like many months ago when he was initially diagnosed with Coat's Disease, it was only one month ago, almost to the day of his surgery!  To make sure he was well enough for surgery, Sam had to have a pre-op physical {which we already did before his MRI} so we just faxed that over, and luckily we didn't have to have another exam! 

Go figure the day before his surgery, he got a little bit of a cold.  I called the on call Dr. because I was not about to drive 4 hours and them tell us they wouldn't put him under!  She said as long as it was a little cold and he doesn't have a fever it should be ok!  So off we went to Minneapolis.

Our plan was to leave on Sammie's birthday in the morning, and head to the Mall of America to let the boys pick out a special toy each from Lego Land.  They had fun, but were very tired from our long car ride.  So we headed back to the hotel and ordered Olive Garden take out!  Everyone seemed happy with that! :)  We went to bed pretty early because we had to check in for surgery at 6:30 AM the next morning.  I am not sure how much any of us slept that night.  Griffin and Sammie are the only two who seemed to get any sleep! :)

Getting up at 5am with 3 kiddos....we lets just say I am glad we don't do it everyday.  Makes for a super LONG day!!  The weather was supposed to be freezing rain, so I was worried about us getting there on time and safely.  We found the Phillips Eye Institute without a problem.  We arrived a little late, but it didn't seem to make much difference.

We didn't have any issues with him asking for food until he saw the bag of snacks I had packed in my bag!!  Then he had a little fit in the waiting room until Nick got up and walked him around the hospital and when he came back he had forgotten all about it.

Sammie right away got 3 sets of drops in each eye.  That just kinda set the tone for how everything else with him was going to play out.  A little while later they called us back for his pre-op stuff.  They took us into a room with a curtain, and told us to put Sammie into some pajamas they had provided. {Next time I am going to ask if he can wear his own clothes, as this seemed to create a HUGE problem for him} 

 

{an unhappy Sammie wouldn't keep his pajamas on that he needed to wear.  The 2 x's on his cheeks are so the Dr. know which eye to look at.  He had BOTH eyes examined and the LEFT eye operated on}

No matter how hard we tried to calm him, he was extremely upset.  I think he might have been scared...in an unfamiliar place, having to put on unfamiliar pajamas. Needless to say, he was pretty pissed at me especially.  I felt horrible.  I wish someone would have just said "It's ok if he takes his clothes off...it's ok if he doesn't want to wear them".  We weren't told this until right before I took him back to the OR.  Would have been nice to know what 30 minutes prior to all the kicking, screaming, crying etc.

 

After waiting for what seemed like forever, Nick finally got him calmed down by playing fruit ninja on his phone.  Notice he still wouldn't put the clothes on.  Poor guy.  I got to carry him back to the OR...which means I got to wear the lovely bunny suit. {sorry, no pictures were taken of that!}  He once again fought the mask, but this time it smelled like cherry...which I think he liked.  Once he slowed down and started to be out of it, I put him down on the bed, and left the room so they could start surgery.

The surgery took exactly 30 minutes.  I wasn't nervous for the surgery itself...mostly nervous for the pre and post op stuff. {which really proved to be the worst}  Once our pager went off saying he was out of surgery we were instructed to go to another waiting room to talk with the Dr.

Outcome
Dr. Quiram told us that the surgery went really well.  She found a lot more leaking in the eye than was initially thought.  She also discovered the retina had already began to tear away.  She said the retina was like looking at a clock, and numbers 1-4 had been torn away.  She is hopeful that after the 4 to 5 surgeries Sammie will need to have that the retina will reattach on it's own, but she wasn't for sure.  She worked on a quadrant of the leaking vessels in Sam's eye.  She said she was very aggressive with it, and will need to be aggressive for the next 2 surgeries as well to get it under control before the retina fully tears away.  She is only able to treat so many vessels at a time because it will aggravate them and might cause more leaking, which we don't want at all!

 

{Daddy carrying Sammie out to the car after surgery}

Recovery
I knew Sam would be upset when he woke up.  What I didn't like is that they didn't page us when they woke him up.  The only reason we knew he was awake is we could hear him all the way in the waiting room SCREAMING for Daddy.  Nick went back there and I am so glad he did.  He told me a nurse actually stopped him and said "I don't think you can go in there yet", but he just breezed by and went in to see Sam.  Once Nick was in there Sam calmed immediately.  I think next time they have got to understand to not wake him up until Nick or I can be there for Sammie.  Yes, I think we might be those demanding parents that all nurses and Dr.'s don't like.....

Sam immediately said his eye hurts and was crying a lot.  They tried to give him Tylenol, but Sam gagged and just about vomited.  We ended up staying just long enough for him to finish a bottle of Cranberry juice, but he didn't want to eat.  He was still pretty out of it when we left and his eye was already pretty swollen...so swollen he couldn't open it.  Which the Dr. said to expect for the next 3-4 days.  Sam was only comforted by his Daddy.

 

{you can see the pain in his face, he didn't want to let go of his eye}

 

{massive swelling - swelled shut - on our 4.5 hour car ride home}

 

{all the boys enjoyed a nap on the way home....Griffin actually slept the whole way home}

Whats Next?

Sammie goes in for Surgery again on January 23rd.  Ironic, that we spent Sammie's birthday on our way to have surgery and we will spend Nick's birthday on our way to have surgery!  We are going up on Saturday this next time to be able to enjoy our time before surgery a little more, rather then being rushed!

Dr. Quiram wants to do at least 4-5 more surgeries in efforts to seal up all the leaking.  We are so hopeful that no NEW vessels start leaking over this process.  I just hope she can restore even a tiny bit of Sammie's vision.  Or at least keep it where it's at.

 

Sam looked in the mirror this morning, and said "Mommy?  One eye open, and one eye closed...TWO eyes open Mommy".  Brooke my heart.  Soon his eyes will both be open, and we will be going through this all over again!

Happy Third Birthday Sammie!!

 {holding your favorite squinkee pie}

I can't believe your 3.  Seems like just yesterday the first words I spoke to you were "he's perfect".  You have grown into this shy and reserved little boy and still be strong willed.  You hide behind my leg when someone talks to you that you don't know, or put your hands in your mouth to hide your silly smile. You are absolutely adorable, and such a good big and little brother.  Often times I find you helping Griffin out, or sharing your toys with him when I haven't even asked you to.

 

{see how he looks at things....with his right eye only}

You LOVE LOVE LOVE to watch Toy Story, and Ponyo.  Everytime I hear the Ponyo song, it makes me want to cuddle with you on the couch and watch it with you.  You always ask Mommy to sew {mostly because I think you enjoy my company} - and always want to help me cute fabric.  I think you mostly enjoy helping Daddy use his cool tools though!  You are literally obsessed with power tools and yard tools!! :)

Right when I think you are a Mama's boy, you prove me wrong by requesting Daddy for everything. ;)  I can't believe your Three.  I don't want you to grow up!! 

Mommy and Daddy LOVE YOU SO MUCH Sammie!!!

Our New Dr.

 

{on our road trip home with VERY dilated eyes}

We got a phone call from Dr. Tufty's nurse {our Dr. in SF} telling us we have an appointment in the cities at 7:30 am the next morning...when can we leave!??!  So I called the clinic asking for a later date...traveling last minutes with 3 kids is virtually impossible.  No such luck for the later date so Sam and I drove up with Grandma and Grandpa.  We were under the impression that she was going to do surgery the next day.

 

{playing with new trucks and diggers from Grandma and Grandpa}

We got there and met Dr. Polly Quiram who seems very knowledgeable and has performed surgery on kid's with Coat's Disease many times before.  Which was a huge relief to me.  Sam had to have his eyes dilated {again} just for a 10 second look.  But she scheduled surgery for Sam on December 12th at the Phillips Eye Institute in Minneapolis.  So we will head out on Sam's birthday and hopefully make a trip to The Mall of America!