11.03.2005

Chuck Mangione

That’s what we call the purple, bubbly growth that has taken over Frankie’s right shoulder. The technical term is hemangioma, vascular malformations or localized collections of blood vessels that are abnormal in structure or number, lead to altered blood flow, and are not cancerous (WebMD). From my limited research, it appears that Frankie has a “cavernous” hemangioma, a “malformation of dilated blood vessels characterized by multiple distended “caverns” of blood that flow very slowly. The blood filled vascular spaces are surrounded by blood vessel walls that do not have enough smooth muscle and stretchable material, so they are not strong and get distended” (WebMD). I also learned that low birthweight infants have a 26% chance of developing a hemangioma. Just another surprise for preemie parents out there!

It has been increasing in size since his birth and recently began to turn white – the process of “involution” -- which is generally a sign that it is healing. Then, it began to crack and peel and turn burgundy in small areas. If the hemangioma begins to bleed, Frankie will have to go to the Emergency Room. This change in its structure did not bode well. (I should note that it looks terrible and is potentially dangerous, but it doesn’t actually hurt Frankie.)

So, the poor kid has been to four doctors in two weeks – his pediatrician, his surgeon, a gastroenterologist and reconstructive surgery specialist. Three were related to the hemangioma and the gastroenterologist appointment we had scheduled a month ago. He had a steroid shot yesterday to begin to treat the hemangioma and will get a blast from a gigantic laser (visiting from Houston) at the end of the month. He is too young to have it surgically removed: because it takes up such a large space, there is not enough skin to cover it up. In addition too all of this, the gastroenterologist recommended changing his formula and medications.

It’s a lot for one little guy, right? But, amazingly enough, despite all of this pricking, prodding and unpleasantness, he’s thriving! He’s up to thirteen pounds and whatever digestive issues he’s having, it doesn’t seem to slow him down when it comes to chow. He’s proved his resilience and strength once again. When Grandma Joann was in town a couple weeks back, we were in the check out line at a bead store and the woman behind us said that Frankie clearly had a “strong constitution.” She said that she could tell from the way that his earlobes were detached from his head. It sounded silly, but we had to agree with her.

5 Comments:

Blogger swamp4me said...

Okay, the up-side to all of this is that the two of you will have the equivalent of a medical degree each...
Give Frankie a kiss for me and tell him to keep on eating and gaining that weight no matter what formula the doc puts him on.

3:57 PM  
Blogger MommaS said...

My poor guy! What formula did they put him on? I'm just proud of him for being an eater! The nasty mark simply needs to go the hell away. He's dealt with enough. I'm just glad that there are treatments for it. He's going to be sick of doctors before he really knows what they're all about. We're thinking of you guys. Give him a squeeze for me!!

6:36 AM  
Blogger Silver Zephyr said...

Nestle "Good Start" is what she recommended because of the way the proteins are handled. They are supposedly easier to digest. All I know is that Frankie has the absolute nastiest smelling farts you can imagine! -Anna

9:41 AM  
Blogger Silver Zephyr said...

swamp4me: Frankie doesn't seem picky about formula! Let's hope this means he won't be one of those kids that only eats bread and potatoes (not that we'd let him get away with that)...

9:42 AM  
Blogger dirtyweekender said...

OK, when you told me that it was his Chuck Mangione, um...I believed that was the medical term for it. You must stop playing with me like this.

11:56 AM  

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