Saturday, September 20, 2008

Pray for a miracle

We have a big decision to make when it comes to Lil J's hemangioma. He's currently on the second round of steroids, and yesterday our ENT said that he would not put him on any more after this because it would be just too dangerous. So if Lil J's hemangioma rebounds again (which is pretty likely considering it rebounded once already), we'll probably have to have the surgery performed to cut it out of his throat. And the ENT, in fact, said he'd prefer to do the surgery now, but he understood why we might want to wait and see what happens after this set of steroids. But here's what the surgery would entail: opening up his neck and throat and removing the hemangioma and probably needing to graft cartilage back into his neck, being on a breathing tube for 7 to 10 days afterward in the infant ICU and being sedated for that whole period so the wound can heal. And there's a risk he could catch pneumonia in there or have other complications. J is leaning more to getting the surgery over with, but I just can't bring myself to do that. I want to wait and see how the steroids go, although it sounds like I'm postponing the inevitable. It just sounds like such an awful ordeal for him to go through, especially since his breathing improves as he gets bigger. But, as J reminds me, if Lil J ever catches an upper respiratory infection that causes his throat to swell, he could stop breathing. What to do, what to do....

8 Comments:

Anonymous Anonymous said...

I will keep you in my thoughts. You know in your heart what the right thing to do is! Good Luck!!

10:14 AM  
Blogger BETH said...

All of you are in my prayers, Ann.

8:49 AM  
Anonymous Anonymous said...

You guys are in my prayers.

Can't they go in there with a scope and cut it out that way? Isn't there a magic laser that could do this less invasively? Anything????

9:02 AM  
Blogger Jocelyn said...

This must be a very difficult decision to have to make. My thoughts and prayers are with you all.

9:02 AM  
Blogger Unknown said...

If you feel strongly against surgery, get a second opinion. It wouldn't hurt and there just might be a less invasive option out there.

I'll say a little prayer to St. Nicholas!

10:25 AM  
Anonymous Anonymous said...

oh hon- I'm so sorry that you even have to make a decision like that! Just know that whatever happens, lil' J has so much love and prayers coming his way!

11:05 AM  
Anonymous Anonymous said...

Sorry to intrude, but I found this blog post doing a routine search for "hemangioma". My daughter (20 mon.) has a large hemangioma (H) on the side of her head. I'm sure you have, but have you or your Dr. though about Propranolol. It is experimental and according to our Dr who talked with the French Drs who stubled accross this, don't really know why it works in some cases. Some are having good results see here:

http://groups.msn.com/vascularbirthmarksupport/general.msnw?action=get_message&mview=0&ID_Message=73331&LastModified=4675690923192038169

or
http://content.nejm.org/cgi/content/full/358/24/2649

We are thinking of you and sort of know how you feel.

5:08 PM  
Blogger Ann said...

You're not intruding at all. Thank you for the information. I hadn't heard of Propranolol, but I'm going to ask the ENT about it!

9:49 AM  

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