Tissue Expansion Nine

At long last this is the final fill.   Yay!  

Erik got to accompany Jamie and C to the Illinois Medical Center in Peoria two days after Christmas.

Peoria Illinois Medical Center

  It was a good thing they had the retractable measuring tape in the exam room again.  The fill went fine.  (Although I don't recommend mom wearing a white scarf to a procedure where blood oozes out of the injection point for 2 minutes after.)  We got the pain killers ordered for after the excision and got things wrapped up in a pre-operation sense.  Surgery date is January 22, 2014.  It is an outpatient procedure and they will keep him overnight for observation.  We are anxious and in preparation.  

C at the Peoria Riverfront Museum

Doctor Elwood is hopeful that he will be able to accomplish all the planned excision in this surgery.  The plan is to rebuild the hairline and side-burn area.  The parts of the mole that will remain as planned are in the eye-brow and eye-lid, a very small bit.      

Tissue Expansion Eight

Uncle Caleb got to accompany the troop to expansion eight.  Jamie picked him up at home the morning of the appointment after some inconsequential drama the night before involving a vehicle stalling on the Murray Baker Bridge, snow storm, and getting pushed off the interstate by a state trooper.  At this point the procedure is becoming routine, but we still cannot wait to be done with the waiting room drama, our heightened blood pressure, etc.  This time round we found a new object of curiosity to kill the waiting time....a retractable mini measuring tape in the doctors office.   C pulls on the end, it clicks out, Jamie pushes on the button to make it retract.  Endless fun - it occupied the 20 minutes until the fill began.

This fill injected 35 cc's into the rear balloon and 15 into the front.  The usual numbers, and we have now surpassed the stated expansion size of the balloons.  They do have room to stretch and we will be back with C one or two more times for further injection to expand confidence.

 

We have had to be careful about what shirts we put him in the day of expansions.  One might think that the size change is incremental enough that if you can get it on that you'll be able to get it off.  Well....we had to cut the collar of a shirt to get it off him because it wouldn't stretch back over his head.  

Tissue Expansion Seven

Headed in for saline fill number seven, Momma, brother and "C".  "C's" uncles met us for the fill.  Older brother "D" decided he didn't like when "C" screamed during the fill so he and uncle left the room when the doctor arrived.  The fill went as expected.  We did learn that the expanders are now at their rated capacity, however they are made to be pushed past that capacity if necessary.  We'll be coming back for one or more fills to get in as much stretch as possible before the final surgery.  The challenge for the surgeon, as it has been explained to us, is that once the balloons are removed in surgery the stretched skin immediately begins shrinking down.  So it is better to expand and have more tissue than the anticipated need so you surely have enough to cover the excision area.  The scalp only stretches so much and skin elasticity is different from patient to patient.  The joke, "I cut the darn 2x4 twice and it's still too short", just doesn't fit very well in this case.......

"C" is taking it very well.  We can tell that his head is cumbersome to him in size.  He easily bumps the forehead on things because it protrudes so much.  Thing is that it is more like bumping on a pillow to him then bumping his head because of the fluid cushion.    Surgery looks like it will be later January.

Tissue Expansion Six

Fill six happened today and if our math is correct "C" has one more fill after this to reach full capacity of the expansion balloons under his scalp.  The additional size and weight of his head we think is throwing off his balance a little as there has been some added teetering and awkwardness.  Really, though, who's to say...he's 17 months old, all toddlers teeter.  The fill went well, a bit awkward as the doctor filled both balloons simultaneously himself (with no nurse help).  It worked, just have to make sure the kid's flailing arms don't hit the needles.  

Fill six, happy kid

We learned today that the surgery to remove the mole will probably have to occur in late January due to the surgeons schedule.  We were a bit disappointed because we thought it would be wrapping up in December which would maximize insurance benefits.  Keep in mind everyone is trying to wrap things up in December and the holidays make it a short month.   So if you are planning something like this make sure to get in early in the calendar year to keep it in one insurance year.  

Tissue Expansion Five

We've entered the "fill rhythm" now.  "C" just gives the doctor a high five when he comes in with the syringes and graciously puts his head on the table so doc can fill the balloons.  *syke*

My wife reports that she has to hold him tighter every visit.  The expanders are doing their job and "C" recovers quickly.  Up to 75 cc's in front and 190 in back.  

After expansion 5

Family and Friends

As parents you get into a rhythm and the new crazy can become the norm.  Of course you travel to Peoria every couple of weeks.  "C" would normally be this whiny right?  And all the other un-sensed stresses of something very different.  

I think my wife and I would be quite a bit more insane if not for our family in Peoria to watch the other kids when they are along for fills and to have lunch ready after appointments.  It's great to have that time together after needles and extra scalp pressure.  "C" still prefers to not be in the van.  

Our Quest Church family has been big support with prayers and dinner on fill days when things are just crazy enough where, "we might just have peanuts and yogurt for supper tonight".

Thank you! We love you all.  

Tissue Expansion Four

Fill number 4 went well.  My wife is taking him for the appointment solo now.  It is starting to get noticeably large.  

Tissue Expansion Three

Similar to fill #2.  Now up to 35 cubic centimeters in front and 140 in back.

After fill three

Tissue Expansion Two

This time C knows what's up and he not happy to be at the doctor.  Another good reason for us as parents to not do the injections at home.  It is possible and would save gas and money, but the negative stigma of a place and person is unavoidable.  So let the doctor and the office be the bad place, keep home out of it.  Now total 20 cc's in front and 70 in back.

After second fill

Commencing Expansion

Today is the first expansion procedure.  A little nervous.  It has been explained to us that saline solution will be injected via the ports under C's skin into the expansion balloons.  The doctor will know when to stop by the discomfort he shows.  The discomfort is a necessary part of the process and is momentary.

After fill #1

The injection went better than anticipated. I had to hold C immobilized cradled against my chest.  The doctor used two larger syringes to fill both at the same time.  C cried when the needles went in, screamed when he felt pressure.  Injection stopped, the needles came out, C sat up and was done crying in about 3 seconds.  We waited a few minutes to observe and make sure everything would be okay.  To C it was almost like nothing had happened.  They got in 10 cubic centimeters in the front and about 20 in back.  We'll be back in 2 weeks.  

After Surgery #1

Recovery and pain management lasted about 2 days.  After day two at home he was totally off Tylenol.  The new challenge was that he was teething at the same time, so he had discomfort there which made it tough to grasp why he would be crying.  We tried to ditch the Tylenol with codeine as soon as possible and stick with ibuprofen or or low dose Tylenol.

Full healing of the stitches took about 3 weeks and there was bruising that set in lasting about 4 days after the surgery.

Day 1 after surgery in hospital

Day 2 

Day 3

Day 4

Day 6

Day 16

The swelling has gone down enough by day 16 that you can start seeing the insertion ports that look like two quarter sized bumps under the mole.  The balloon expanders are back and above his ear and in his forehead straight above his nose in the day 16 picture.  The balloons are under the skin and will be expanded to increase non-mole skin surface area.

Surgery One

Surgery day is here.  It is an outpatient procedure that comes with a one night recommended stay for pain management. Tues - travel and get ready, Wed - surgery, Thurs - recover.

Pre-Surgery

When the nurse tells you the rules and your child is not to eat 8 hours before the surgery make sure to err on the long side.  We learned the hard way....

Our surgery time was at 12pm (noon). It got delayed to 3pm due to the food error (eating within the 8 hours) and the appointment ahead of that ran late so surgery didn't begin until 4pm.  We had checked in at 9:30 and were up at 5:00.  Long day in a waiting room.....We will do it differently next time.

The procedure to install the expansion balloons took two hours and went easier then expected.  That two hours in the surgery waiting room is like six.  You cannot wait to be done, but you know that first day is going to be hard.  We got called to the recovery room a little after 6pm.  "C" was doing great for his part!  He was laying in a little infant bed and immediately wanted me to hold him when I arrived.  Only one parent can go into the recovery room so I went because my wife was spending the night with him.  This was my chance to have some time with the little guy.   I got to feed him Enfamil out of a bottle to keep him hydrated.  Here's a kid that never touched a bottle, now drinking from a bottle.

The tangible response of relaxation that "C" had when I held him was awesome.  He was in pain and around strangers, crying, the nurses were attempting to comforting him.  I picked him up (monitor wires, IV and all) and sat down in the rocker and *sigh* he stopped crying and breathed deeply with a little moan per breath, then he slept a bit.  Maybe it was the narcotics they just gave him, but I think otherwise. ;)         

A little after 6:15 we were released from recovery and sent to a low intensity recovery unit.  Pain management was the main objective at this point.  About every 45 minutes, and on cue by "C", we were able to give him something to keep it reasonable.

Post Surgery

As an elective surgery this was a moment where big picture focus was needed to keep it all together.   Poor guy.

Tissue Expansion - Pre-Operation

Once the decision was made to remove the mole a surgery date was scheduled.  A pre-operation appointment occurred two weeks prior to surgery to go over final surgery plans and answer any questions and concerns we had as parents.

Pre-Op: The surgery plan was to make two 6 cm incisions along side the mole, loosen the tissue and insert a tissue expansion balloon behind the mole on the back of his head and in front of the mole on his forehead.  The mole size being 11 cm in diameter requires removing and replacing 7 cm of scalp (with hair) and 4 cm of forehead (no hair).  the tiny bit of mole in the eye-brow, eye-lid and upper cheek would be handled in a later surgery.

Once the tissue expanders are in place time will be allowed for healing.  Then the tissue expansion process will begin, which involves injection of a saline solution into the expanders under the scalp via two ports under the skin.  Six to eight inject dates will be necessary.

Nevus Excision - Tissue Expansion

Plastic surgery is nothing new to my wife and I.  Our older son had a condition, craniosynostosis, just after birth where his skull sutures fused prematurely, which required craniotomy to allow space for normal brain growth.  Our experience at Peoria Children's Hospital at OSF was great so we had a familiar plastic surgeon to work with.  Because this is somewhat new territory we also visited a pediatric plastic specialist at St. Louis Children's.  Both very good at what they do.  The abbreviated version is that nevus removal would require more than one surgery, potentially 3-4.  Roughly 60% of mole is scalp, 30% forehead, 10% eyebrow/eyelid and upper cheek.  Due to this varied tissue make-up this is not a simple one step procedure.

Tissue expansion would be required to remove a majority of the mole in 2-3 surgeries.  Due to the inward and outward pressure involved in the expansion the procedure isn't begun until after the 1st birthday.  So we had some time to think about it.  The interesting thing is one would think the cosmetic concern going through life would be a big piece of the rationale going into the surgery decision.   It wasn't, look at how cute this kid is (even if I say so myself).  Do you really want to cut that up?  Heck no!

The risks of future impact on health and complexity and position of the mole makes surgery a compelling thing for now, not when he is 15 or 25 or later.  Could you imagine walking around high school with scalp expanded out the size of a bowling ball? Not happin'n. Certainly cannot do it, cosmetically right, under the gun if the tissue becomes cancerous.  

The choice was made to excise the mole and have the procedure done at OSF Childrens Hospital in Peoria, IL by Dr. Elwood.

Peoria Children's Hospital at OSF

   

Giant Nevus - Pediatric Dermatologist

So our first step in following doctor recommendation was to visit a pediatric dermatologist. Recommendations ranged from Chicago to St Louis. The reason was that a specialist with regular experience with giant nevi would have insights that others may not.   So we took the direction of visiting Dr. Bayliss at St. Louis Childrens Hospital.

St. Louis Childrens Hospital

Scheduling time with the doctor required a recommendation from Connor's primary care physician and then we had to check with health insurance to make sure the visit would be covered.  Out of network... of course.
The visit day came and we drove 3 hours to St. Louis for a visit that confirmed - yes, this is a giant nevus, no it does not appear to be "high risk" because the surface texture is uniform and there is no irregular or concerning features, but yes there is an elevated risk of cancer later in life.  What that risk is ranges from 6%-15% based on the literature, but the data is inconsistent because very few giant nevi are alike.  This implies a sample size too small to establish a statistically significant or accurate % rate.  The doctor took some pictures and told us to keep an eye out for any changes in shape, edge texture, or any other change at all because that could be an indicator of irregular cell growth.

So what are our options? We asked the doctor.  You can have it removed or leave it and take the risk of needing to remove it later in life due to irregular cell growth.  So we talked briefly about getting a recommendation to see a plastic surgeon at SLCH to see what that involved.  So we were back to St. Louis four weeks later.

My Giant Congenital Melanocytic Nevus

A giant congenital melanocytic nevus is essentially a mole and a giant one means its big, which means it carries additional risk for melanoma.  The more abnormal cells the greater the risk.  Congenital means present from birth.  Melanocytic means a concentration of melanin, which is skin pigment.  Nevus is doctor talk for mole.  

"C", our son, was born with one of these on his head. 14cm in diameter.  (If you are not sure, it is the dark spot on your right just NE of his left eye.)  

It's one thing being an innocent bystander to witness a child with an obviously visible large mole.  As an anxious parent awaiting the birth of a child it's all the emotion of the "miracle" of child birth with a "HOLY $*@!" attached.(Not a huge "HOLY $*@!" just a small one as he is healthy otherwise.)

We are fortunate in that it is a singular mole.  Many times these are accompanied by dozens of satellite moles all over the body creating a different kind of challenge.  After a few tests "C" was cleared of any neurological melanocytic interference, which means the issue is only skin deep.     

As parents we were confronted with all kinds of questions.  Is it cancerous?  Are there other risks?  Can it be treated/removed? What are the options in an age of swift medical tech advancement?  So we embarked on a series of doctor visits for fact finding.