3 days until McCoy's first surgery

This Sunday has been a flurry of mixed emotions.  It's been a wonderful day spending moments with McCoy and sharing giggles and smiles.  But it's also been a difficult day with the weight of surgery only 3 days away weighing down on us.  The past couple of weeks I've randomly come across quotes that I'm sure I didn't find coincidentally.  The messages have been like little nuggets of gold - they have brought encouragement and peace, and also opportunities to further reflect on spiritual matters and how our trials fit into the big scheme of things.  I'd like to share these quotes, maybe you'll enjoy some of them too:

Strength from the fast

As you know, Dallas and I began a 60 day fast for McCoy starting at the beginning of February.  We invited some family members to join us for 30 days.  Without knowing who is fasting, or for what precise purpose (McCoy's surgery in general or something more specific), it has been amazing to see and feel blessings that have come as a result of this joint fast.  Without really even being able to put into words the feelings we've experienced, suffice it to say, we (and especially me) have felt a significant added measure of strength of peace come into our lives.  In big ways, but also small ways, we have seen Heavenly Father's hand in so many areas in our life these past weeks, and we've felt Him extend his loving arms around us in moments of sadness and despair.  It is obvious to us that these "extra" blessings we've been given have come because of our efforts, yours included, to fast on behalf of McCoy.  We can't express enough the gratitude we have for all the love that has been shown to McCoy, and to us.  We are grateful for your willingness to fast with us, and we are thankful for all the prayers.  These seemingly small efforts have already made a difference in our lives, and we feel at peace knowing we can continue to experience blessings as a result of these efforts.

More questions answered

Information given to us by Ly, the nurse that will care for McCoy during his fills (weekly), who works under Dr. Burns.

What will the recovery room be like at the hospital? Since we're staying for the night (23 hours), I'm wondering if there will be a bed for us to sleep on, or is it just a chair, or couch?

I don't know how the hospital room is set up. I know that he will have a bed but I'm not sure if it will fit both of you. I can find out and let you know.

Can the expanders become infected, like the fluid inside, or is it the skin over the expanders that sometimes becomes infected? Or can infection occur both ways?

Usually infection involves just the skin, the port, or the incision sites. I have not seen the fluid inside the expander get infected. If there is any infection, the skin will become very red. If this happens, we will stop expanding that expander and treat it with a course of antibiotics.

Should I shave/trim the hair on McCoy's nevus prior to surgery? I have heard about adhesives on incision sites sticking to the hair. If I do shave it, will it be itchy?

The OR staff will shave a little bit of hair where the expanders will be inserted. The ports will be under the skin where the nevus is. You will need to put some adhesive bandage over the ports once you put the numbing cream on (numbing cream goes on the port sites before each fill). It may be be better to shave the hair so that it won't bother him so much when we remove the adhesive during the expansion (fills). You can also ask the hospital staff to shave it in the OR also.

What medicines should I have on hand at home? Any? (Particularly for right after surgery).

He will be given 2 medications: antibiotic to prevent infection and a pain medication, usually hydrocodone or Tylenol with codeine.

Is it true that custom expander are less likely to get a leak than standard expanders? I'm feeling anxious about this as our friends the Bellavigna's experienced a leak in their son's first expander, and then another leak in the replacement expander. We are having standard expanders placed.

Not necessarily true. Both types of expanders are at the same risk of leaking since they are made of the same material. I have seen both leak.

What will recovery be like? What should I expect? How many days should it take for McCoy to feel and act his normal self (worse and best case scenario/most common outcomes)?

Recovery time is usually about 3-5 days. He will be most fussy and irritable the first couple days. He may have a decreased appetite and may just want to be held. You may want to give him pain medication every 4 hours initially, then every 6hours, then every 8 hours until he is back to his usual self. Worst case scenario will be that he does not feed enough and becomes dehydrated or has an infection right after surgery.

Lastly, I remember Dr. Burns mentioning that traveling while expanders are in is okay. However, I wonder how realistic this is, and what your thoughts are on trying to take a road trip the last week of March (4 weeks after surgery), that requires a 4 hour drive? Will he be very uncomfortable? How many fills will he have had at that point?

The fills begin 2 weeks after surgery to make sure the incisions are well-healed before putting them under more tension. Dr Burns will inject some saline into the expanders in the OR to make sure they are working properly. McCoy will go home with the expanders and some saline in them. We usually start the fills with a small amount initially and slowly advance during the subsequent fills.

Dr Burns is ok with traveling. At 4 weeks post-op, we will only have completed 2 fills. He should be fine sitting in a car seat during this time for traveling. It becomes more difficult and uncomfortable once the expanders become large.

McCoy's Nevus

McCoy has seen two pediatric dermatologists; Dr. Pouchia in Houston, and Dr. Fred Ghali in Dallas. McCoy will continue seeing Dr. Ghali to monitor his nevus and satellite moles.

On November 14, 2015 McCoy had an MRI performed on his brain and spine, to check for the neurocutaneous melanosis.  The radiologist at the Texas Houston Children's hospital, where the MRI was performed, confirmed that McCoy's results were negative for any melanin deposits on his brain and spine.  His MRI images have been sent to Dr. Barkovich.  Dr. Barkovich is the Professor of Radiology, Pediatrics, Neurology and Neurosurgery University of California, San Francisco, and is regarded as the foremost expert in detecting neurocutaneous melanocytosis (NCM), using non-invasive techniques that are revolutionizing the diagnosis of this confounding condition.  Since 2008, by formal arrangement between the University of California and Nevus Outreach, Dr. Barkovich is able to read the MRIs of children with large nevi to determine if they have NCM, and when they do, where it is and how large it is.  He is the radiologist who developed the protocol for performing these MRI's, so he is considered an expert in this.  This has brought comfort and hope to many families affected by large nevi.  Our family is awaiting the results from Dr. Barkovich, which we expect to receive soon, in the next couple of weeks.

McCoy has also met with a pediatric plastic surgeon here in Dallas, Dr. Jay Burns, who is considered one of the best in his field.  He has removed nevi before. He is a member of the prestigious Dallas Plastic Surgery Institute, a renowned group of internationally known plastic surgeons.  Dr. Burns currently is working with a family whose son has a giant nevus on his lower back and bottom area, and they are in the removal process now.  We (Tanisha, Dallas and McCoy) met this family and their son in their home, and have become friends and a good source of support and information for one another.  

Through much fasting and prayer, we have decided to proceed with removal of McCoy's nevus.  This process will be the hardest thing we have been through, but we know Heavenly Father will take care of us and be with us every step of the way.  

One blessing we choose to focus on is the fact that McCoy will not remember any of this.  It has often been said by fellow parents of nevus owners that removal is harder on the parents than it is on the child.

Information given us by Dr. Burns:

Expected removal process:

Insert 6 tissue expanders, 3 above nevus (1 on each shoulder, and 1 in between, near his neck), 2 on each side of the nevus, and 1 large one below nevus. The 3 on top are very small, and even though expanders can expand to several times their size, it will be a play by ear as to how much we can really get those expanded and how much skin we can get from those 3. Burns may expand those as much as possible, then take them out and re-insert 1 large one on top and keep expanding until he has enough skin on top as well as all around. During insertion surgery, Burns will put some fluid in the expanders (so they are not completely empty when inserted, they're already a tiny bit expanded). McCoy will heal for 2 weeks, then fills begin every week. Fills typically occur on Wednesdays, they can work around our schedule. A needle will be inserted through the skin into what is called a port. This port is where the fluid is injected in order to expand the tissue expander.  Every expander has a port connected to it, so there will be 6 ports. The ports will all be within the nevus (so scars will be gone when nevus is removed). The incisions for placing the tissue expanders will also be right on the edge of the nevus so that when the nevus is removed, those scars will be gone as well. Expansion will take place for approx 6 months (if possible and if nothing goes wrong). Every week we will go to Dr. Burns office to receive fills in all 6 of his expanders.  A numbing cream will be given to us in order to try and reduce the pain of the needle.  We will fill for approximately 6 months, as mentioned before.  Thats how long Burns feels it may take to get enough skin. If all goes well and no unexpected things occur, he will then perform the excision surgery. He will remove all expanders and ports and use that skin to pull over the nevus area, after the nevus is removed. The nevus tissue will be sent to pathology. The healing will take several months even up to years. It is extremely common for the incision to pull and separate, especially on the back, as children are wiggly and active and it tends to separate. This can be painful and cause infection sometimes. Proper care for the incision and drains will be discussed closer to excision surgery. During this whole removal process, Burns does not do anything for satellite moles. The focus is the expansion process and satellite moles can be tackled later if needed.

Things that can go wrong: incisions don't heal properly after insertion of expanders. Expanders become infected/the skin surrounding it. The expander can poke through the skin as the skin stretchs and becomes thin. McCoy may get sick, at which time fills are not performed. An expander can get a leak. Skin may stretch worse than expected, thus affected final outcome of scar during excision.

Potential complications of surgery:

• Skin flap failure
• Infection
• Wound breakdown
•  Bleeding or haematoma
• Hypertrophic or keloid scar

What are the chances you can remove the whole nevus in one shot? (only 1 insertion surgery and 1 removal surgery, with no complications)

It will be difficult, maybe 85% chance.  Several things can go wrong.  One disadvantage is that McCoy's nevus covers most all of his "good" skin on his back...the surface area of skin that I have to work with to stretch and expand is limited, which makes it difficult.  The good thing is, it's all on his back.  It's in one place, and this can help in the expansion process.  He is also young, and the skin stretches better when a child is young.  There are better situations, but there are also much worse - McCoy's is not the worse I have seen or performed surgery on.  I've put in up to 12 expanders at one time.  6 is a lot, but again, it could be much worse.

What happens if we have an emergency and you're out of town? (Leakage, infection, anything to cause need for removal).

Burns has several partners & associates he would trust his own child with, if he were gone extended amount of time he'd go over McCoy's case in detail personally with another surgeon and have him perform any necessary emergency surgery. That rarely happens if ever at all. Can only recall maybe 2 cases that's occurred on. He will do the removal himself though no matter what, it's more likely an emergency surgery would interfere with an unexpected schedule issue (Burns being gone). Burns is gone more frequently in the fall.

Is recovery harder with the more expanders placed, vs less expanders?

It's more about surface area than number of expanders. The more surface area that is pulled up in order to place an expander, the more uncomfortable that surface area is. So more surface area disturbed, more areas of discomfort. His expanders are small, even though he's having several placed.

How many ccs are you aiming for, or can you tell us how big the expander needs to get before you have enough skin? 

A = B + C (a being needed length of 1 expander, b being length of nevus, c being length of skin where expander is)
Burns likes to fill & fill and keep filling until he basically can't anymore. Not really aiming for specific ccs.

When will surgery for removal be scheduled? 

Not yet. Play it all by ear. Depends on so many factors: infection, unexpected issue, illness, how well skin is stretching, etc.

Can a nerve block be performed during insertion so he wakes pain free?

No (too much surface area would be affected and would be dangerous.) Works more for a limb surgery.

Will the expanders pull and move his belly button and or nipples?

No.

Will there be drains after insertion?

No, only after excision.

What is care like post insertion surgery? Wound care, etc.?

We'll go over in detail wound care after surgery. No drains after insertion, only excision.

If we lose an expander, can you keep going with the other expanders?

I would re-insert an expander where we lost one, and yes keep going. But that's only if the expander sprang a leak. If it's infected (the skin or incision), and you're far along in the process, that expander will need to be removed and the skin expanded will need to be utilized by excising some of the nevus, meaning all the other expanders would have to come out and I'd take as much nevus out as possible, but then we're done and we wait for a whole year. We cannot do anything until everything heals for 1 year. So hopefully that does not happen, as our goal is to get the whole nevus in one shot.

You only would re-insert an expander if there was no infection and just leakage, correct?

Correct. I may also expand the skin on top of his nevus (on shoulder blades and neck) as much as I can, then take out those 3 expanders and re-insert 1 larger expander, then keep filling and expanding until I can't expand anymore. 

When an expander leaks, if it all gushed out quickly, will you lose all that skin quickly? How does that work?

It should never gush out quickly, and the chances of an expander leaking are so so slim. But if it did leak, the answer to losing that expanded skin is a yes and no - you won't lose any skin if you act quickly (within a week-ish), but if you waited longer than that, yes you'd lose skin day by day.

Is scar revision surgery common?

Somewhat. It just depends how well McCoy scars, and how it changes as he grows. Scar revision is to make the scar thinner and less noticeable, so it requires re-cutting the existing scar, and is full surgery (under general).

 

is a member of the prestigious Dallas Plastic Surgery Institute, a renowned group of internationally known plastic surgeons - See more at: http://drjohnburns.com/?gclid=Cj0KEQiA89u1BRDz8enExq7rvN0BEiQAaFCHm3h1PpzxV0deN-EMQTR4pERCwv-Far8-F0s165BLst8aAquB8P8HAQ#sthash.CQrKWjCV.dpuf

is a member of the prestigious Dallas Plastic Surgery Institute, a renowned group of internationally known plastic surgeons - See more at: http://drjohnburns.com/?gclid=Cj0KEQiA89u1BRDz8enExq7rvN0BEiQAaFCHm3h1PpzxV0deN-EMQTR4pERCwv-Far8-F0s165BLst8aAquB8P8HAQ#sthash.CQrKWjCV.dpuf

is a member of the prestigious Dallas Plastic Surgery Institute, a renowned group of internationally known plastic surgeons - See more at: http://drjohnburns.com/?gclid=Cj0KEQiA89u1BRDz8enExq7rvN0BEiQAaFCHm3h1PpzxV0deN-EMQTR4pERCwv-Far8-F0s165BLst8aAquB8P8HAQ#sthash.CQrKWjCV.dpuf

Information on Congenital Melanocytic Nevi

Congenital Melanocytic Nevus: A medical term for a birthmark, or proliferations of pigment cells that are present at birth. (plural = nevi).

Satellite lesions (or moles): Smaller melanocytic nevi's away from the main nevus.

Classification of Congenital Melanocytic Nevi: Congenital Melanocytic Nevi (CMN) are usually classified by size.  There are several different classifications.  Modifications have been made to the way CMN's are classified, and the latest classification system was organized in 2013. That classification is as follows:

• Small: Less than 1.5cm (measured across the largest length of the nevus)

• Medium: two classifications - M1: 1.5 - 10cm, or M2: 10 - 20cm

• Large: two classifications - L1: 20 - 30cm, or L2: 30 - 40cm

• Giant: two classifications - G1: 40 - 60cm, or G2: greater than 60cm

• Satellite nevi: none, 1-20, 20-50, and greater than 50

McCoy's nevus has been classified by his pediatric dermatologist as a G1, with satellite nevi (or moles) being between 1 and 20. (He has approximately 11 small, very light satellites).

How common are congenital melanocytic nevi (CMN)?
     Small CMN occur in 1 in 100 births.
     Medium CMN occur in 1 in 1000 births.
     Giant CMN are much rarer, and only occur in 1 in 500,000 births.

They occur in all races and ethnic groups, and males and females are at equal risk.

CMN's vary in appearance: they can be single or multi-shaded, round or oval shaped pigmented patches.  They may have increased hair growth (hyertrichosis).  The surface may be slightly rough or bumpy.  CMN usually grows proportionally with the child.  Some may become lighter over time, other may become darker, raised, or more bumpy and hairy, particularly around the time of puberty.  CMN are usually asymptomatic, however some may be itchy, particularly larger ones.  It is thought there may be reduced function of sebaceous (oil) and eccrine (sweat) glands, which may result in skin dryness and a heightened sensation of itch.  The overlying skin may become fragile and erode or ulcerate.  Deep nests of melanocytes in the dermis weaken the bonds between the epidermis and the dermis and account for skin fragility.

Giant CMN (like McCoy's) are associated with an increased risk of developing cutaneous melanoma, neurocutaneous melanoma, and sometimes (but rarely) other tumors.  Neurocutaneous melanosis is a rare syndrome defined by the proliferation of melanocytes in the central nervous system (bain and spinal cord), and the presence of a congenital melanocytic nevus.  One is at a higher risk for neurocutaneous melanosis if: one has a G1 or G2 categorized nevus, and/or if one has a high number of satellite nevi.  It is estimated neurocutaneous melanosis affects 5-10% of people that have a giant CMN.  However, it is likely that the majority of cases remain asymptomatic, and the true incidence remains unknown.  The melanocytes in the brain and spinal cord may often be detected by an MRI scan. 

What causes congenital melanocytic nevi?

CMN are caused by localized genetic abnormalities resulting in the proliferation of melanocytes; these are cells in the skin responsible for normal skin color.  This abnormal proliferation is thought to occur between the 5th and 24th weeks of gestation.  If proliferation starts early in development, giant and medium sized CMN are formed.  Smaller CMN are formed later in development, after the melanoblasts (immature melanocytes) have migrated from the neural crest to the skin.

Risk of developing melanoma within congenital melanocytic nevi

The following characteristics of CMN are associated with the increased risk of development of melanoma (skin cancer):

• Large or giant size (like McCoy's)
• Axial of paravertebral location, meaning crossing the spine (like McCoy's)
• Multiple congenital satellite nevi (McCoy is considered to have few satellites)
• Neurocutaneous melanosis (McCoy's first MRI read has come back negative for this condition)
• Early childhood (it is said risk is highest for children with CMN to develop melanoma within the first 5 years of life)

The risk of melanoma is mainly related to the size of the CMN.  Small and medium sized CMN have a very small risk, under 1%.  Melanoma is more likely to develop in giant CMN.  Lifetime estimates are 5-10%.  McCoy's pediatric plastic surgeon, as well as his pediatric dermatologist, suggests that McCoy's risk is probably right around the 5% chance.  Melanoma can start deep inside the nevus or within any neuromelanosis found in the brain or spinal cord.  Very rarely, other tissues that contain melanocytes may also be a source of melanoma such as the gastrointestinal tract mucuosa.  In 24% of cases, the origin of hte melanoma cannot be identified. 50% of melanomas diagnosed in those with giant CMN occur at another site.

Melanoma associated with CMN can be very difficult to detect and treat.  The risk of development of melanoma is greater in early childhood; 70% of melanomas associated with giant CMN are diagnosed by the age of 10.  Rarely, other types of tumor may develop within giant CMN, including benign tumors and other malignant tumors (including sarcomas).

Reasons to consider surgical removal may include (according to doctors):

• Worry about risk of melanoma (removal reduces risk for giant CMN)
• Difficulty in observing the mole
• Recent change in the lesion (darkening, lumpiness, increasing size)
• Melanoma-like appearance (eg irregular shape, variegated color)