Wednesday, January 21, 2009

H Info...Sami Update


Well, we have had an eventful few days with doctors! I don't think I had posted that I had gotten Sam in see a doctor at Phx Children's Hospital, for Tuesday. Anyway, we were still going along with Dr. A's plan of doing the injection. So, on Monday the surgery scheduler called to set up the procedure. We still had a number of unanswered questions, so Pete asked to talk to someone so we could get some answers. Well, the PA who I had see wasn't available, so the scheduler tried to answer them as best she could. After speaking with her Pete did finally get to speak to the PA. Now, when I went into the office this woman rushed in to the room (wearing a shirt showing her belly mind you) and really just left me with a bad taste. However, I thought it was me and just decided not to worry about her. When Pete hung up after talking with her, though, he commented on how snotty she was to him. So, I felt justified in my dislike for her then. :) Because, if you know Pete, you know that he can deal with almost anybody and not be bothered. So, if this woman rubbed him the wrong way it surely wasn't just me. Anyway, aside from the cold attitude of both the medical professionals at this office there were some major communication conflicts that just really bothered me. First, Dr. A had told me that to put her out for the procedure she *may* have to have a breathing tube b/c of her age. That he would check on it. Well, the PA insisted that ALL patients get a breathing tube no matter their age. This is a minor issue, I know, but why don't they agree on this? The other thing that bothered me the most was that Dr. A told me there was absolutely no risk to putting her out and also that he wanted the procedure done in about 10 days. Well, the PA tells Pete that the dr isn't in a hurry for this to be done and that we should wait until she's 12 weeks old b/c then the risks of putting her out are lower, the same as an adults. So, apparently there are risks! I don't know - they were cold and they seem to not be communicating well - I honestly just didn't like them or want anything to do with them. I was sooooo glad that I had kept the appt with Phx Children's for Tuesday! So, Tuesday we went to see that Dr. T. I was nervous b/c I knew he was young and I worried that I wouldn't like him. However, when we arrived it was wonderful. They took her back, did a weight ( 6 lbs 11 ozs by the way!!!) and took her blood pressure. When Dr. T came in he was sooo nice. He shook my hand (the other guy just came in sat down and stared at me) and then spoke in such a kind way about Sam and her H. Plus, the best news ever is that he wants to try the beta blockers on her!!! Here is a link to more info: http://content.nejm.org/cgi/content/full/358/24/2649 When I asked Dr. A for them all he said was "no, no, I don't do that". Whatever... Anyway, we started the beta blockers this morning, she will take them 3 times a day. We will go back on Thursday to have her blood pressure checked and to meet with our Dr. T's partner who has also been using this medication with great results. I called our ped, Dr. G, and cleared it with him. He is very supportive of trying it and says that he is not concerned at all that she will be negatively affected by the drug. I was so happy to hear that because I just love our Dr. G and really value his opinion. Plus, it sounds like we ended up in the right place. When I told Dr. G that we were at Phx Children's his forst words were "Excellent!" So, that is where we stand now. I'm so hopeful that this will work for her. Please say a little prayer that we will see good results and that she won't have to deal with any harsher drugs or more invasive treatments while she is so young. I'm going to post daily photos so that you can all watch her progress with us.

1 comment:

My name is Sherri said...

So excited to watch for the results and I'm sooo happy you finally found someone you are comfortable with. I think thats very important! I'm praying for your little angel!