I returned last night from the appointments for Mercy.    There were good reports and bad reports.

The Cat scan did show that the hemangioma is not in her brain, which we are glad for.   The prednisone is also has reduced the swelling behind her eye enough that it is no longer bulging.

Unfortunately, the hemangioma is all behind the eye, left face, and down the neck.  I just got more and more discouraged with each appointment. 
The ophthalmologist was encouraged that the eye was not bulging any more.

The laser surgery was harrowing, and I will be doing more research before her second set in a month.  There was no cooling of the skin, and she was not sedated in any way.  It obviously was very painful and traumatic for her.  In turn, it was traumatic for me.  I will be asking about common procedures for infants before putting her through it again.  I want to be sure we are doing everything possible for her comfort, and to be sure there  is no scarring if possible.

My last appointment was with the Eye socket plastic surgeon.  He was very informative... let me see the CT pictures, and explained everything to me.  At least, everything he could.  He said that we need to get in with an ENT as quickly as possible, due to it going down her neck, and the possibility of airway issues.  She DID have between 98 and 100 % oxygen rates during her sedation, so it is currently not affecting her breathing.  He is also getting us in with a pediatric plastic surgeon to get second opinions (or to help form a treatment plan for her) about what to do with the eye, and when.  He will personally be making calls to these doctors this morning, and seems confident that he can put together a good team for her.  I LIKED him... I think he will be our best advocate right now.

The eye is the big concern now, besides the airway.  The back of her left eye is completely filled with the blood vessels.  It is wrapped around the optical nerve.  It is pushing against the bones, causing them to move out to make room for it, since the bones are still soft.  This will be a big problem since if the eye socket grows larger to accommodate the vessels, it will be too big for the eyeball when they finally disappear.  He said that right now she is too little to do a surgery like that as it would cause some blood loss and she does not have enough blood to afford that, is the impression I got.

So Mercy will now have 5 specialists following her care... a dermatologist, an ophthalmologist, the eye socket plastic surgeon, a pediatric plastic surgeon, and an ear/ nose/ throat doctor.  It is a bit overwhelming this morning to be facing so many appointments, all over 2.5 hours away.

Anyone know anything else we should be thinking about and asking for?

Thanks for your prayers.  I will keep everyone posted as we find out about this. 

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Posted by debbiecorley

I will be praying for your beautiful baby. I love her name! I was just telling "smallworld" the other day how I love those old pilgrim sounding names. Love, Patience, Comfort, Jovial, etc...

The milk in the eye story was funny...I wonder why cow's milk seems less gross than the milk from a loved one? interesting.

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Posted by kleo30

We are praying for you! She sure is a Peterson baby, eh?

~Kelly

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Posted by Anonymous

Wow, what a day full of appointments. You posted over at my site today and I'm very thankful for the great sock idea. I always seem to buy different socks and then don't have matches.

I've been in your shoes, having a baby with medical issues. The one piece of advice I'd give you is to ask the doctors for all their medical records/write ups. After each appointment the docs write a very descriptive summary of the visit. I found it very helpful to have these to refer to later. Also, they send this type of info to one another when more than one doc is involved. You can asked to be copied on these correspondence. It helps keep you in the loop. I would also ask each doctor you're dealing with if you can have their email address. Most docs I had to deal with were really good about this. Merritt's main neurologist is awesome at returning emails, often within a couple of hours.

I'll keep you and your very precious baby in pray. Blessings to you and your lovely family.
Kathy - lessonsfromthelaundry

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Posted by Anonymous

Any updates, Carri? It's been awhile now, and I thought I'd check back.

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Posted by Petersonclan

We have GOOD reports... see the above post. You beat me to the internet! Thanks for checking in and for praying.

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