Caleb's Arm Surgery

OK, so I don't normally write so much in a post as I'm more of a lots of pictures-little words type of gal, but today is different.  I know it's long, but it's worth it if you can read to the end.  Well, it meant a lot to us.

Here's cute little Caleb when he first began teaching himself how to play piano at 4 years old:

You may have never noticed, but he has a large bump on his right arm.  

When he was born, he had a small red mark on his arm which they called a strawberry hemangioma.  

It wasn't any big deal, but in the next few months of his early life, it began to grow and even began bleeding. 

For years we had taken him to specialists who told us that it would fade away and flatten out and it was nothing to worry about, but as he grew, the bump grew as well.  

Caleb was always a cute little kid, however, it did make us feel bad when people would look at him funny or  make comments.  We even had some people telling us we should cover it up with arm bands and arm wraps because it was so gross.  What an awful thing to do to your kid as to make him feel as if he needed to cover up parts of him that were "unsightly". 

We trusted in the doctors and knew as long as it wasn't hurting him, that we would leave it be. 

Over the years the color seemed to lighten up, but the bump was not shrinking.  Here he was at 5 years old:

Caleb didn't let it get to him.  He always had kids at the park poking him or asking him what it was, but he didn't worry too much.  We figured when he was older that he could have it removed if it bothered him too much.  

It is funny though, that it was always a big topic of his YouTube videos.  If people weren't commenting on his actual piano playing, they were asking, "Hey, what's that thing on his arm?!"  It goes to show how judgmental people can be.  

Anyway, we weren't too worried, but all of the sudden at his 9 year old well child check up, his doctor out of the blue tell us that his hemangioma is not going away and it's not going to change anymore to shrink, so we should go see a plastic surgeon.

Now, we had looked into surgery before on his arm, but the children's hospital had told us it was strictly cosmetic and that we would have to pay them a $100 fee just to have a consultation with a specialist to see if surgery was an option.  Good grief.  We weren't going to spend that money just for someone's opinion.

However, our pediatrician gave us a certain number to call and set up an appointment, and so we went ahead and made the call to see what they would say.  The plastic surgeon's office we talked to said that insurance covered their visit and so we figured why not go and see what they say.

When we took Caleb in, the surgeon was very nice, and he explained to us that it would not be strictly cosmetic.  He said it was a congenital malformity and should be removed.  Plus, he said that insurance usually covered the surgery completely depending on your insurance plan.  He said he usually took care of things like this within the first couple years of a child's life, so it was a little different that Caleb was a 9 year old.  Why hadn't anyone ever told us this?  The surgeon said that we never talked to a surgeon before.  Well duh!  Don't these specialists at the children's hospital talk to each other?  I guess not.  

Before deciding, we did have a few worries.  This was Caleb's right arm and Caleb loved to play piano.  Would this surgery have any damaging effects on his arm or were there any possibilities that he would have problems playing the piano?  We called and asked questions, and they assured us that it was a very "non-invasive" surgery.  So we decided to go ahead and surgery was scheduled for Caleb right after Christmas on December 29th.  

When we told Caleb the news however, he was OK with it until we told him that he wouldn't be able to play the piano for a few weeks.  This is when he began to cry.  He said, "but I really like to play the piano and that will be a super long time!"

All was well the day of the surgery we went to the hospital.  They have a baby grand piano on the 3rd floor and Caleb insisted on playing "one last time" before surgery.

They got him all checked in and dressed.  He got to bring his special bear friend "Snowflake" that he had gotten for Christmas.

The surgeon arrived after a while and marked up his arm to make sure we were getting the right one.

But then the news changed a little bit.  Upon examining Caleb's arm a bit more, he decided he was going to do the surgery a bit different.  Before, he had suggested that it would be a pretty small surgery and he would either have a straight line scar or a sort of an S shape which Caleb thought was awesome, but now he was saying there was more to it.  He said he would have to do what he called a "flap".  He would have to cut a much larger area and then flip over a large piece of skin or something and it was going to take a little more work.  I didn't worry so much, as he said it would be an hour and a half surgery and he would be fine.  

A few minutes later we were met by the anesthesiologist.  He began asking me if Caleb was going to stay overnight because it was such a more "extensive surgery than planned".  Huh?  I didn't know anything about this.  This was outpatient surgery.  Maybe he was confused.  Anyway, I got to say goodbye to Caleb and then I was set to wait.

I had my second clue something was up when I went to the waiting area to check in and the staff told me I was going to be there for a good 2 hours as it was going to be a much longer surgery.  Hmmm.....OK.  

Well, I waited, and I waited and waited some more.  It was crazy that I was there with all these other families of kids getting bones reset, tonsils out, and chest ports put in, but they all came and left while I was still there.  They had called after 45 minutes to tell me Caleb was doing fine, but then after that I had no news for hours.  It was approaching almost 4 hours since I had left Caleb and still hadn't heard anything.  What was going on?  Finally the call came.  It was funny because the receptionist had left so I hopped over the counter and answered the ringing phone myself, and luckily it was for me.  

I went back to meet Caleb in recovery who was still asleep.  There was the surgeon who had purple marker all over his face (kind of funny, I assume from his marker on Caleb's arm).  He began telling me it was just as he had planned but along with the hemangioma there was a large clump of fatty tissue that had grown and some scar tissue, and then on top of that all the blood vessels had grown through it and intertwined around the growth.  He said they had to cut all these vessels and then they had to be cauterized and there was a lot of bleeding.  And then he said something that I didn't make sense of.  He tells me that Caleb's arm going down to his hand was going to be numb, and I'm thinking, "well, yeah, he's all numbed up from surgery", but that's not what he was saying.  He said that he tries as hard as he can to make sure there are no possibilities of any nerve damage, but when he was in Caleb's arm, there was so much he had to untangle and remove that a large nerve was affected and then he said something about electricity to stop the bleeding and something about seeing the nerves light up on the monitors that I didn't understand.  He tells me that there really isn't any way to tell right now, but that we should just "pray that somehow his arm and his hand were not affected permanently", and also that even if that were the case, that often times nerves can regenerate themselves.  

So, here I am overwhelmed and not understanding what this meant exactly and not knowing what to say.  I felt like I wanted to cry, but then I didn't because I didn't want to make the surgeon feel bad as if he did a bad job or something, and so I didn't say anything and I didn't ask a lot of questions, I was just freaking out a bit in my head.  The surgeon left and I set about waiting for Caleb to wake up and get him well enough to go home.  

When Caleb was awake enough I immediately was asking him if could move his hand or his fingers or if he could feel my fingertips.  Yes, crazy mom as I am, this was me, "Caleb, can you feel this?  Can you wiggle your fingers?  Can you do this?"  He could move his fingers somewhat, so I was hopeful.  I guess I wouldn't know anything for a while as the doctor said.  Poor Caleb was so sick from the drugs and he was very sad that his arm was in a sling and as he said he was scared because it was just "so different".

He wanted to go home, so we finally got him out of there and drove home.  Troy had called, but I didn't want to tell him too much over the phone because I didn't want to freak out Caleb, but from what Troy had guessed, I think I had freaked Troy out more by not being able to tell him the whole story.

Here is Caleb at home a few hours after surgery feeling better from the nausea and not in pain yet as the drugs were all working pretty well.  We set him up in a little chair with lots of pillows.

In another room, Troy and I talked.  Troy was freaking out about the possibilities of Caleb's arm having permanent nerve damage.  He kept saying that this could change Caleb's whole future.  I felt calm somehow and told Troy that I felt that everything would be OK.  I didn't believe that God would give Caleb such a gift of playing the piano to take it all away like that.  And even if there were some permanent damage, I knew that Caleb would get past it.  The Bishopric came over and gave Caleb a blessing.  We put Caleb to bed and hoped for the best.

The next day Troy took Caleb back in to see the doctor.  There he removed a tube from his arm and changed the dressings.  He talked to Troy a bit and explained that he had to scrape one of the main nerves in Caleb's arm and that when cauterizing the blood vessels some of the nerve endings were destroyed.  He did do a little bit of nerve testing with Caleb's arm, hand and wrist.  He poked at Caleb with a toothpick and a cotton swab to see what Caleb could feel and if he could tell the difference between soft and sharp.  I was at work, but Troy called me with the news.

He told me Caleb's hand and fingers had not been affected!  His wrist was OK, and it was only about 2 inches above his wrist where the nerve damage appeared.  Caleb couldn't tell sharp or soft from about the 2 inches above his wrist to a little lower than his elbow, but it was all the top part of his arm, and it didn't seem as if it would be anything that would affect his piano playing too much.  We were so happy!  Caleb had truly been blessed!

As we changed steri strips over the next few days we were a bit horrified with the large incision and how parts of it were gaping open.  

Yikes!  We did not feel adequate to be trying to close skin together with strips of tape.

Caleb had to wear a sling for a few weeks.  It got tiring, but he was a good sport about it.

After 2 weeks he got to remove the sling, but still had his arm wrapped.  His doctor gave him the go ahead that he could start playing the piano again, but it had to be pretty mellow and nothing too fancy.  

This is about the time when we finally told Caleb about the extent of his nerve damage.  Whenever I would change the dressings on his arm I would periodically ask him if he could feel this or that.  I don't think he knew what we were doing as the doctor had done that too.  We hadn't ever really said anything in front of Caleb about anything.  We didn't want to freak him out.  

But one evening he said to me, "Hey, Mommy, I can't even feel anything right here or here, and if you touch here I can only feel it a little teeny bit."  I didn't want to lie to the kid, so I just ended up telling him that he might not ever feel those parts again.  This of course made him very sad and he began to cry, but I told him it was OK.  He could be tough.  Some kid could karate chop him there and he wouldn't feel anything.  Or he could play volleyball and it wouldn't sting his arm.  I told him it didn't matter those parts and that he was very lucky and that he had been blessed that his hand and wrist were spared.  

About 4 weeks after surgery his arm looked like this:

5 weeks after surgery it was looking much better.

I've decided his scar is like Captain Hook.  See it is a hook shape:

And then at 6 weeks post surgery it has really began to lighten up and his arm has flattened out a great deal. Well, at first it was weird.  It was like the part of his arm where they removed everything was caved in and then bubbled up around the incisions, but now his arm has really evened out.  

Caleb is back to running around like crazy, standing on his head, and playing the piano once again.  What a big ordeal it was considering what a simple little surgery it was supposed to be.  It's amazing too as we just received the hospital bills that show they had to give him 3 units of blood as he lost so much blood.  I guess they don't tell you these things as you are waiting for 4 hours in the hospital.  But all is well.  Caleb is OK and this will be but a distant memory soon.  

We don't worry too much about a scar.  He's a boy.  I'm sure he can come up with all sorts of cool scar stories.  That, and the doctor says any hair that grows on his arm will cover it a bit.  

It's so strange that his arm looks so little and skinny now.  Actually, I'm glad of any scar that will be left.  It will be a reminder that small miracles can happen, and Caleb can have a physical testimony that God exists and loves him.    We know that Caleb was meant to play the piano for a greater purpose.  While he was unable to play the piano, I had printed off some new church sheet music arrangements and given them to him to try later.  When he was given permission to play piano again, what a beautiful sound it was as he began playing this beautiful arrangement of a church hymn, "If You Could Hie to Kolob".  

             

This Sunday he will be playing it in church.  I hope others may love it as we do.