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!!

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!

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!

Sam's MRI.

Last Friday, Sam had his MRI to completely rule out Retinoblastoma Cancer.  We checked in at the Children's Hospital at 9am.  From there we got to head up to his room and endure the pain of 4 sets of eye drops.  The first drops they gave him was the Lidocane {to numb his eye for the eye exam}.  I guess those can burn pretty good, so from then on out he was terrified to get drops. 

 

Yeah.  We had to go through that 3 more times.  It sucked.  The nurse had to literally PRY his eye lid open and get a drop in there while he was screaming "Daddy Daddy Daddy".  It wasn't fun.  For him OR me.  But we made it through! ;)

 

While we waited I broke out the squinkees.  A new toy for a special little boy who was not having a fun morning.  He loved them.  So glad I brought him something special.  From there we got wheeled down to MRI.  I got to ride on the bed with Sam...I think that made him feel a little better about everything that was going on.  Then once we got down there the nurse said just one more set of drops...I could have killed her at this point.

Next it was time for Sammie to go to sleep.  Luckily I got to hold him on my lap while he wore his mask.  I really forgot just how awful that stuff smells.  Poor Sam.  He fought it.  He kicked the guy trying to help, screamed and cried.  Tried to rip the mask off his face, then a few seconds {which seemed like an eternity} later he was a limp noodle.  I won't lie, that was pretty hard to see...but I kept it together.  If my Mother in law wasn't there I think I would have lost it.  Thanks Kris, for keeping me strong!! :)

 

{Sam still knocked out.  They put his IV in while he was under anesthesia - Thank God!!}

So Tufty did his eye exam and then showed me the picture he took of the back of his eye.  I could see where the leaky blood vessel was and how filled the eye was with this extra fluid.  It was pretty much covered, and Dr. Tufty thought it had been going on for quite some time.  Which just made me feel awful for not knowing.  He told me that he thinks Sam is in Stage 3a of Coats.  Which is pretty progressed.  It's the last stage in which Cryo therapy can be used and effective.  It's too late for Laser.  In stage 3b the retina is completely detached.  Luckily he said Sammie's is still attached.  AND!!!!  NO SIGNS OF ANY TUMORS - NO CANCER!!!!  That was a HUGE weight off my shoulders.

So now I just feel like it's another hurry up and wait.  We got results, but because his Coats Disease was so far progressed, Dr. Tufty is sending us to Minneapolis for treatment and surgery.  I am hopeful they can get us in for surgery this week.  That would make me feel so much better.  It's just a matter of taking the whole family up there and dealing with this.  Ethan will probably have to miss a few days of school, but hey - who ever said playing hookey for a few days isn't ok!? :)  I hope to hear from the Dr. today as to when we will head up there.

 

{I took this of Sam after he woke up and was more cheerful - his eyes were super dilated}

This picture was pretty interesting.  In a Coats eye, it will look white in a picture with a flash.  You can kinda see in his left eye it's not as red as his right eye - more white.  Interesting isn't it?  Once the retina has totally detached, it will forever be white.

Coat's Disease.

On Friday, November 11 {11-11-11}, we took Sammie into the Dr. for "Lazy Eye".  You can see it in the picture below. {It's his left eye}  You can see his right eye is looking at something and his left eye is wandering up and out.

 

Anyways, we went to the eye Dr. in anticipation on leaving with a patch.  We left with a diagnosis of Coat's Disease and glasses, which he will now wear for the rest of his life.  

What is Coat's Disease?  The way I understand it is, there are abnormal blood vessels behind the retina that are "leaking" protein into the eye.  The protein can build up, causing the retina to swell.  This can cause the retina to tear away {which will cause blindness}.  It's not something that can be stopped.  There is no treatment for it.  Laser surgery or cryo-therapy might help slow it down, but it can only be performed when the disease is in certain stages.  It is not hereditary, it was just something Sammie was born with and typically shows up between 5 months and 8 years.  Usually by the time it's caught it's so late that not much can be done.  He's so young and unable to tell us his eye is fuzzy, and that he can't see.  It's a very rare disease and typically shows up in little boys {more so than girls}.

We saw Dr. Tufty this morning, who confirmed the diagnosis.  At this point I am not sure how well he can see out of his left eye.  I do not know at what stage the Coat's Disease is at in his left eye.  The good news is it usually only effects ONE eye.  His right eye seems to be ok.  He will forever wear glasses to protect his good eye...the glasses do nothing for his Coat's eye.  The Dr. saw swelling behind his eye today.

This disease could eventually leave him blind in his left eye.  It all depends on how far it is progressed and what kind of treatment is available.  Dr. Tufty was amazing with Sam.  I am relieved that he will be the one caring for Sam through this life long process.

Sam has to go under anesthesia next week so the Dr. can get a better more thorough look into his eye.  He wants to also make sure this is not Retinoblastoma {which is cancer}.  He said the symptoms mask Coat's Disease and Sam is at the prime age that Retinoblastoma shows up.  He will also have an MRI to rule this out.  

All this will take place next week {Happy Thanksgiving right??} So I will keep you posted as to what information we are given.  Please keep Sammie in your thoughts and prayers!!

Mommy and Daddy LOVE YOU SO MUCH SAMMIE!!