Thursday, January 15, 2009

H Info...Sami Update

Sam has seen 2 doctors this week. We saw the ENT on Tuesday, however after he saw her he thought another doctor would be able to treat her better. Turns out that the dr he recommended had just moved his practice here and is a pediatric plastic surgeon trained in vascular birthmarks. So, this was terrific news since I had thought that we would have to travel to NY to see such a specialist. I called his office when we got home and got her in for Weds. I was very excited to see him and had very high hopes. Unfortunately he just didn't feel right to me. I don't know what it was. I just love our ped so much and I even really liked the ENT he sent us to. This guy just didn't leave me all warm and fuzzy feeling. I don't know if that's necessary, though. I know he was very knowledgeable and I'm confident he will treat her right, I just wish I loved him more. Anyway... we talked, he measured her H and took pictures and we have decided to go forth with treatment. It will be an injection of (insert drug name I forgot), to be done in about 10 days. It will be done under sedation and she won't feel anything. This drug is supposed to collapse the blood vessels feeding the H and stop it's growth and maybe shrink it a bit. One thing I liked a lot was that he will call the procedure off if when he sees her the H has not grown any since yesterday. I think that's great - makes me feel like he's not going to do anything that's not necessary. At this point the H has spread and is into her lip. Which means that she will eventually need surgury to remove it completely. I guess the lip is a tricky area. He guesses that she will be about age 1.5 - 2, or when it has completely stopped growing. I'm still a little gray on the whole thing, and I guess that's why I feel so odd about this doctor. I just feel like I needed a little more from him.
As far as the Dr. in Tucson for tomorrow I have cancelled that appt. That office definately did not feel right to me. The woman I talked to made it a point to tell me they would not give her anything to stop/numb the pain during the procedure because "she's just a baby and she won't remember it anyway". That statement actually made me want to vomit. I'm so glad I decided against him. I called to cancel the appt yesterday and it turns out that they had her scheduled her for a laser treatment! They haven't even seen her yet and they have decided on her course of treatment! Needless to say we are not pursuing anything else from this doctor. I'm still not completely at peace with the plastic surgeon, but if surgery is inevitable it would be a peds plastic surgeon we would want to do it.
As far as our sweet Sami goes, though, she is wonderful and sweet and completely happy! We are so lucky to be her family.
Oh, just have to add a little story about Jesse... As I was looking around for info on H's on the internet I was looking at some pics of other babies with them. One little boy had a very large one on his face. From his forehead, down his cheek and onto his chin. Jesse walked by and looked at him. Instead of being shocked, or saying something negative my sweet little guy took one look at that baby and said "Wow, that baby's angel sure gave him a lot of kisses". Sam is so lucky to have such a great big brother!

1 comment:

My name is Sherri said...

So sweet of Jesse! I would have cried!