One Week Post-Op

Oh, what a week it's been.  Complications?  Uh, yeah.  You know Murphy's Law, right?  Mom and dad sometimes think our last name should be Murphy.

We left the hospital last Friday afternoon.  Everything seemed ok, except that they wouldn't let me take any of the good drugs home with me!  The doc said all I needed was the OTC stuff, so that's what we had to go with.  Being on our own started out just fine.  Even though my incisions are in my back and on my bottom, I didn't have any problem getting into my carseat.  Dad cut some foam for it to make me more comfy, which worked out well.

Heading home from the hospital

I spent most of the day the way I spent the previous day and night -- sleeping in mom or dad's arms.  But then they noticed that I was getting warm.  Warmer.  Warmer.  By evening, my temp had reached 102.  Ugh!

Now, as I have said, I have the most fantastic doctor.  And he gave mom and dad his personal cell phone number to call if necessary.  So, of course, they did.  Doc wasn't too concerned.  He just said to manage it with Motrin, and he called in an antibiotic for me.  The fever did go away later that evening... temporarily.

In the end, I battled that fever for 4 days.  It would come and go, always going back up to about 102.  And of course, it made me feel terrible, which in turn made me a bit grumpy.  So, I didn't bounce back from surgery as quickly as expected. 

Being as uncomfortable as I was, I continued to spend my time being held, both day and night.  At one point over the weekend, I did try to lay in my own bed.  But that didn't work out.  Because of the drains coming from my wounds (which have to stay in 10 days post-op), the hospital said I'd have to wear arm-restraints in bed so I don't pull out the drains.  Well, me laying on my back (which I don't like), plus restraints on my arms (which I really don't like!), just didn't add up to a successful experiment.  So I ended up sleeping with mom every night for the first several nights.

 Sporting those darned arm restraints

A few days later, I did start to feel better.  I even started sitting up again.  Still couldn't roll, but at least I began gaining my independence back. 

Ahhh, you can start to see that spare tire

Yup, I am starting to smile and play again!

Just when things really started to look up, along came a little problem - that became a big problem - that became a little problem again.

Yesterday, when mom and dad went to change my dressing, they saw that it was bloody.  Uh-oh!  As it was unraveled, it became obvious that I had popped a couple of stitches, leaving two holes in my backside.

OUCH!

Immediately, they called the doctor's office. They were instructed to email over this picture so the doc could see what was going on.  He agreed it looked like some stitches had torn, gave instructions on wound care, and said not to worry.

Well, as mom and dad began to unravel the dressing again to clean the area (it was a few hours later), they saw that the dressing was bloody again.  Uh-oh became OH NO!  Now it appeared that more stitches had torn, and the skin had torn right along with them, leaving one big hole.

Another call to the doc - a direct one to his cell this time - left us with 1) instructions to get in to the office the following day (which was today) for a closer look and 2) a warning that the expansion may now be delayed.  Wonderful.

Ok, remember I said, the "big" problem became small again?  Well, it turned out that the stitches hadn't actually torn.  They were intact -- they were just underneath the top layer of skin.  What happened was that my nevus skin had torn along the incision, and the stitches just sunk down to the next level.  That nevus skin is so fragile; they're not kidding when they say that.

So, Dr. Bauer stitched me back up - which I did not enjoy at all - and said our expansion should be back on track.  We'll see on Monday... 

In the end, it wasn't a big deal. But it did take my discomfort level up a notch, at least for a little while.

Ahhh, now that I've gotten all the complaining off my chest, I want to share that this week certainly wasn't all bad.  First, and best, I got to spend time with some of my fellow nevus-owning friends.  I mentioned Sully (17-months-old) before.  He's my little buddy from South Dakota who had his fourth surgery the day I had my first.


Super-Sully!

Sully has really shown me, and others, the ropes on this adventure.  Well Sully and I got to get together with two of our other friends - Zac (Arizona, 8-months-old) and Brooklyn (Montana, 10-months-old).  Both Zac and Brooklyn had their first surgeries today, and both are doing well.  But before that, we all got to have some fun.  I can't tell you what a blessing these little guys (and gal) are to me - and to my family.  We really do love them all, and were so thankful to see them and share this experience with others going through it. 

My sissy and I have also had some fun this week.  Yesterday was her 3rd birthday, so we got to do some celebrating.  And it snowed today, which was fun to watch.  Sissy even got to go on a super-tall ferris wheel for the first time this afternoon.  Here are some pics from the fun stuff...

Catching a snowflake this morning

Ok, I'm not so happy to be bundled up, but I was still in a good mood, I promise!

Dad and sis are up there... somewhere.

Happy 3rd, sis!

All in all, we've had both our ups and downs this week.  But right now, we are feeling thankful that my recovery is going well, we are looking forward to completing my first expansion (and getting rid of these icky drains) in a few days, and we are so excited to go home next week.  Though, if the remaining 11 weeks of this expansion go as quickly as this last week did, we'll be back in Chicago before we can say "nevus"!

1 Down, 3 to Go!

It is about 24 hours post-first surgery here at Highland Park Hospital in Chicago.  It is raining, "warm" (you know, 49 degrees warm), and the snow is quickly melting.  I am relatively quiet and calm, enjoying whatever pain killers they are willing to pump me with, and "contently" laying belly to belly with my mommy or daddy at any given time.

Yesterday morning, we arrived at the hospital at 6:00 a.m. Of course, I had no idea what I was in for... just look at how happy I was!

All bundled up, just arriving at the hospital

The nurse quickly got me changed and hooked up to all the do-dads they need to keep track of the important stuff. And then Dr. Bauer came in to touch base before we got to the main event.

Pre-Op nurse getting me ready

How cute am I in my hospital gown???

Dr. B is ready... am I?

At 7:30 a.m., the nurse whisked me away, and mom and dad went to the waiting room.  Surgery lasted about 2 hours, and then Dr. Bauer happily came in to tell mom and dad that it went very well.  He implanted two 500 cc expanders under my skin, just above my nevus.  They were already filled with 75 cc of saline, which gives us a great start on expansion.  Just below the expanders, and under the nevus, he placed the tubes and ports that mom and dad will access to fill my expanders on a weekly basis.  I think we are aiming for 600-700 cc each by the end of expansion.  Don't ask me how we're supposed to put that into a 500 cc expander -- but they'll tell us when we do my first fill.

As an added bonus, Dr. Bauer was able to remove BOTH of the annoying lumps that were on the very sensitive area of my bottom, as well as another little nodule that was problematic.  Mom didn't want to post such a graphic photo, but she says my bottom looks great, and I'll take her word for it!

We spent about an hour in recovery, while my temperature and oxygen levels came up.  Then, we settled into our room.  My Nana and Great Auntie and Uncle came with my sissy, and that helped to perk me up.  As soon as I heard her voice, I looked up, and she sang me some songs to cheer me up. 

Sissy singing to me

Sissy with Nana and Auntie

By mid-afternoon, though, my numbing anesthesia had worn off, and it was definitely time for pain meds.  Needless to say, I was rather uncomfortable.

They started with plain infant ibuprofin and then infant Tylenol, but those just didn't cut it.  Before bed, the nurse got me an order for Tylenol with Codeine, and that was much better.  We were able to sleep on and off all night in a chair, with just slight hourly interruptions of pain.  I got a second dose of the good stuff at about 4:30 a.m., and some more ibuprofin this morning.  I haven't been able to get comfortable enough to nurse, but have taken a couple of bottles, and we can see my appetite coming back slowly.

Relatively early this morning, we got to do the unveiling, and mommy and daddy got to see my backside for the first time. 

Getting ready to change my dressing for the first time. 
Look - I even held my bear! 

The stitches are on the sides just under the top of the nevus.
You can just barely see the bump from the expanders right above the stitches. The expanders will be more obvious as the swelling goes down.

We change my dressings daily, and I also have drainage tubes coming from the incision that will stay in for 11 days.  Mom and dad have to change the drains every 4 hours, but it isn't hard to do.  We will see Dr. Bauer's staff on Monday for a check-up, and then again a week from Monday to remove the drains and do my first expansion. 

All in all, this has been a rough experience, and I am nowhere near myself yet, but it is coming.  I'm a strong boy, I have a strong family, and we are so very blessed to have the most wonderful friends, family and medical staff to get us through this.  We couldn't do it without you.

Cuddling up to mama the morning after

On a final note, I did get to see my buddy Sully for a quick minute yesterday.  His surgery went well also, and he is feeling about how I am feeling.  But he is a trooper, and he is showing me how to take charge of this situation.  As soon as we're up to getting a picture together, we'll post it.

Welcome to Chicago!

We made it!  On Monday, December 27th, we got up very early, got on a plane, and flew to Chicago.  Our plane ride was uneventful, and both my sissy and I had a good time.  My sissy, in fact, thought the plane ride was lots of fun. Here she is enjoying the take off...

I did pretty good myself...

We got here expecting bone-chilling cold.  And yes, it is very cold.  But nowhere near as cold as we all expected.  We have hardly had to bundle up!  But we have beautiful snowy views for sure, and can't wait to get out and play in it.

View from our hotel room

View from our friend's home

So, what have we been doing all this time?  It has actually been pretty busy.  Monday was full of travel and getting settled.  Yesterday, daddy drove us around his hometown, which is about an hour from our hotel.  And today was spent at Dr. Bauer's office.  We spent a lot of time there - much of it waiting.  But that's the price you pay for choosing the best doctor in the world, so we didn't mind.  We also got to see our new and dear friends from South Dakota, the Nagels.  Sully, who is 17 months old, is having his 4th nevus surgery tomorrow, right after my first surgery.  I have a feeling he and I will be great buddies in the future.

I am scheduled for surgery tomorrow at 7:30 a.m., which means we have to check in "dark" and early at 6:00.  Surgery should take about 2 hours, and Dr. B showed us exactly where to expect the expanders, ports and tubes.  He also showed the little parts he hopes to begin removing tomorrow.  It is going to be a big day!  When I wake up from surgery, I should be relatively comfortable because they'll be giving me a numbing anesthesia to help me adjust.  I'll be bundled up in bandages for days, so we won't get a good look probably until at least next week. 

Dr. B also talked to my parents about what we can expect in future surgeries, and it all sounds good.  We are so relieved to finally get this process started, and are looking forward to the light at the end of the tunnel.

We will keep you posted on how it all goes.  Please join me in praying for all of the surgeries coming up to go well.  Not only is my friend Sully having surgery tomorrow, but my other friends Zac (8 months, Arizona) and Brooklyn (10 months, Montana) are having their first surgeries with Dr. B next week.  We are definitely all in the best hands possible, though, and are ready for this adventure!

Getting Ready for Chicago...

MERRY CHRISTMAS everyone!!  Today is Christmas Eve, and tomorrow is my first Christmas.  We leave for Chicago 3 days from now, with my first of four surgeries over the next year just 6 days away.  Anxious?  I guess we are.  But more so about getting there and getting started, and about my recovery, than about the actual surgeries.  I know we have the most spectacular surgical team we could ever have been blessed with, and they will take excellent care of me.

We did have a little hurdle though, when my doctor found a double ear infection at my pre-op physical appointment last week.  She put me on an antibiotic, and thank God my ears cleared up beautifully.  I still have the slightest bit of congestion, and as long as it doesn't progress into anything, we will be good to go.  But we're all on pins and needles just waiting.  Don't worry, I am not sick.  It just happens that my teeth decided to start popping out -- in just one week, I got my THREE first teeth!  So that is the culprit, and we think it should all be ok.  The plane ride is probably more of a risk, but I am taking a back-up antibiotic to help protect me and keep me healthy until next Thursday.

So, what's the plan?  We will get to Chicago on Monday, which will give us a day to get acquainted with the city and get settled before meeting with Dr. Bauer on Wednesday.  On Thursday, I'll go in for surgery, where he will be place two (I think two) expanders in my body.  I believe they will be around my waist, but we'll find out more when we meet with him on Wednesday.  He will also be removing one of two little lumps I have on my bottom.  The other one will be removed in the second surgery.  We will go back to Dr. Bauer's office about 10 days later, and they will "fill" my expanders once before we come home.  In general, that's what we're expecting.  We will definitely update you when possible during our trip. 

Until then, enjoy the holidays, wish us luck, and please pray with us.

Good News with MRI #2!

After two weeks of working to coordinate two different doctors' orders for my second MRI, the hospital finally got the paperwork straight and scheduled me right away -- the next afternoon in fact.  So, last Thursday, December 9, I went in for the scan.  It was a very long scan - over 2 hours - and it included my brain and neck, and cervical, thoracic and lumbar spine.  So basically, the whole shebang!  And, of course, mom made SURE that they performed the MRI according to Dr. Barkovich's instructions.  Those familiar with NCM know how important that is.

I did great during the scan, and while the anesthesia worked well during the procedure, the second they took it away (it was a gas), I woke right up.  I wasn't even out of the tube yet!  I guess it's good to know how quickly anesthesia wears off me before I begin having my surgeries!

The next day, which was a Friday, we waited all day for the phone to ring.  Alas... it didn't.  So, when 4:30 rolled around, mom sent an email to my wonderful dermatologist (one of the ordering doctors) to see what's up.  Dr. P. is so awesome -- five minutes after she got mom's email, mom had the report.  And.......

IT WAS FANTASTIC!!

The small spot of NCM is still there, but has not changed.  While that was expected, it is still a blessing to know it is stable.  The rest of the scan was completely normal.  We couldn't be happier.

Now, if you remember back, one of the reasons I was having the scan was because my parents discovered that my pupils were unequal.  So, the MRI didn't do much in the way of clearing up that mystery.  But, the opthamologist didn't expect it to anyway.  So, we're not totally back to square 1, but we're close on that issue.  I suppose that may just be how my eyes are, and thus nothing to worry about.  We'll see what the doctor says after he reviews the MRI with mom.

So, this was glorious news, and mom and dad can really relax now.  We've had great appointments with NCM specialists who don't think we have much, if anything, to worry about neurologically.  We've had a full and complete scan, and know how extensive -- or how mild, I should say -- my NCM is.  Now it's time to just enjoy the holidays and prepare for surgery.

We leave 2 weeks from tomorrow...

San Francisco

We took our trip to San Francisco at the beginning of this week, and it went great!  We left very early Sunday morning, and arrived in San Fran by 8:30 a.m.  We had the entire day to hang out and sight see, which is just what we did.  The afternoon was spent with a nice long drive through the wine country and along the coast, though I did sleep through most of it!

Monday morning, we got up bright and early, and were at Dr. Sherr's office at 8:30 a.m.  Dr. Sherr is a pediatric neurologist, and has experience treating other children with NCM.  We spent a good hour with him, during which time he examined me and answered all of our questions.  Here are the highlights from our appointment:

* My development is right on target
* He agrees I am asymptomatic, and that there is a likelihood I will remain that way
* He gave us very specific indicators to watch for, in the event symptoms do appear
* If symptoms do appear, we should be able to control it with medication or through surgery
* My NCM spot should not grow or change
* He does not think I am at higher risk for more NCM spots
* He does not foresee any life-threatening issues caused by my NCM

He gave us recommendations for when to re-image and how to manage with our local neurologist.  He also told us we could send our upcoming MRI results over to him and he'll give us his opinion if there are any changes.  And, unless symptoms appear, we should not need to go back to San Francisco for medical reasons.  Overall, a very good appointment.

A few hours later, we saw Dr. Frieden, a dermatologist, who is both a congenital nevus and NCM expert.  Dr. Frieden has a lot of experience with NCM patients, and has conducted NCM studies herself.  And, she was even more reassuring about my NCM.  She said I have "a bit" of NCM, that it is very mild, and in terms of severity, she considers it a 1 on a scale of 1 - 10.  She said I have a 90% OR BETTER chance of NEVER having symptoms.  How wonderful that was to hear.

Dr. Frieden also agreed that we are doing all the right things in terms of my nevus.  She was glad to hear that we are going to Dr. Bauer for surgery, and had no additional recommendations for us.

On another note, neither of the doctors had any ideas what is going on with my pupils.  Both agreed that since I am already going through another MRI, we may as well check everything.  So currently, we are trying to coordinate two doctor's orders so that we can schedule my MRI and re-check my brain, as well as my entire spine and a few other places.  No one is expecting any surprises, but we are still praying that there are no NCM spots detected other than the little one they found in my first MRI. 

Now, before I go any further, mom and dad discovered a big faux pas last night when they were looking at photos taken in early November.  They saw this photo of me, taken 2 weeks BEFORE they noticed that my pupils were unequal...

Ok, so this picture is probably too small for you to see it, but if you enlarged it, you would see that my pupils are unequal, even if just slightly.  Mom couldn't believe it existed before that awful night where they rushed me to the ER.  So they began to search backwards in our family photos and there is a picture of me, unequal pupils and all, at 6-WEEKS-OLD!  So they had been that way all along.  Unbelievable that nobody noticed before.

So then mom called the opthamologist first thing this morning to admit her mistake, but he still wants to proceed with the MRI.  I guess the bottom line is that something is wrong with my eyes, whether it started now or when I was born.  So we shall proceed as planned....

Another MRI...

Ok, so my eyes haven't made it back to normal yet - the pupils are still unequal at varying times throughout the day.  Mom checked in with my neurologist about this, and he suggested that we talk to the opthamologist again.  So we left the doctor a message, and when he called back, he told mom to bring me right in.  We weren't there 5 minutes when he told us he was ordering an MRI - another MRI I should say. 

Before I go any further, I need to tell you that the opthamologist is not concerned about what he might find on the MRI.  But the last MRI I had when I was three months old didn't scan the areas he needs to see to check for what's going on with my eyes.  If the MRI is clear, I'm not sure if we'll ever get an answer about my eyes.  It may just be how they are from now on, but the doctor said it should have no medical significance.

That being said, as mom and dad were discussing this upcoming MRI, they realized something they hadn't before.  My other MRI was incomplete.  There are three parts of the spine to scan, and only one was done.  We have no idea why it was incomplete, and when we checked in with the dermatologist, she said the same.  There's not much of a point in asking why this wasn't brought to our attention in the past, we know now. 

So, since I'm already having another MRI, we're going to re-check my brain and check the rest of my spine for any NCM spots.  Hopefully, this will be done next week.  Until then, we are praying praying praying that I have NO NCM spots other than the small one they saw in my other MRI.  Please join us in this prayer. 

Now, go and have a happy Thanksgiving everyone.  I - we - are definitely thankful for all of you.