Doctors Appt on Friday July 10th

Rob and I took Aryssa to her doctors appointment yesterday. When Dr. Seawell her pediatrician called on Wednesday, she was talking about she got us an appointment with the GI doctor within a month and that she didn't have the specifics yet due to Alexis her assistant would be calling with the date and time. Rob simply asked her how this was all going to play out... referring to the fact that if she needs to get the mic-key button, how long will it take for us to get to GI and then he most likely is going to want to pull the tube. He was worried that it would take another 3 months or so to go thru the process. She said that the GI doctor would be the one to DO the surgery but she would call and find out and get back to us. About an hour later Alexis calls us and tells me we have an appointment on Friday at Vanderbilt and that if they tell us that its going to be too far out to do the surgery, she gave and example of November, then to call Dr. Seawell and she will see what she can do. I assumed this appointment was for the GI doctor, due to what we just discussed an hour prior with Dr. Seawell on the phone.

So we go to the appointment yesterday, and the doctor comes in and wants to know what has been going on. We tell him what happened whens he was born and told him about what had all happened when she got the tube put in almost 3 months ago. He looks up at us and says "well I see you have seen a lot of doctors here except for a GI doctor and I don't see a swallow study has been done either". We both said we know... we have requested both of those several times and kept getting from all the doctors that it was not necessary. He was just appalled. I told him we thought HE was the GI doctor and he said "no, I am the pediatric surgeon that would be doing the surgery on Aryssa". He continued on and on stating that due to not being seen by a GI doctor or having a swallow study done... he is not all convinced that she needs the surgery yet. I told him that with her throwing up all the time and her reflux getting so bad, that it keeps getting suggested that the tube is causing all that and that getting a mic-key button in would help her and that she may start eating again. He does not believe that the tube would be causing all those problems. In fact, those problems could occur WITH the mic-key or be worse. He said the simple fact of throwing up and reflux isn't a red flag necessarily to put her thru surgery. He said yes it might turn out that she will have to have the surgery, but he says he still isn't convinced that it is right now. He is going to go talk to the GI doctor in person and try to get us into see him soon. He went ahead and put us on the books for the surgery for Sept. 8th and will try to get us in sooner if they have an opening with the understanding that we get a swallow study and upper GI done, see a nutritionist,and be seen by a GI doctor. If all says they feel its necessary then we will go forth with the surgery.

I know this may sound vain but I told him another concern of mine is how big the scar is. I told him that I saw a video on the Internet on Thursday where this kid had a huge scar from the top of his belly all the way to the bottom. I explained that in the video his nurse pointed out the scar and stated that it was from when he got the mic-key button placed in years prior. The doctor explained to me that she would have an incision about 3-4cm above her belly button and then a hole with a tube coming out of her stomach. He said that if her reflux was to get really BAD with the mic-key button then another procedure would have to be done (forgot what it was called) and that procedure would leave a pretty big scar similar to the one that I may have seen in the video I was referring to. Oh my gosh, I started crying. I have had so many people's opinion on what we should do for Aryssa and done research my head is literally spinning. My head is so full of "what if's". Do I have her get this surgery and take a chance it makes things worse for her and she have to have another surgery to correct it, or do I maybe keep the NG tube in a little longer and she if maybe she progresses in therapy and take the chance that she doesn't and that puts her another several months behind. I know everyone says "trust your gut, trust your motherly instinct" but to be honest... I don't know if I have one anymore, I don't know what the right thing is. How do I make that decision for her, and take the chance that it was possibly the wrong decision and the only person paying the price for it.... is Aryssa. I am just so confused and conflicted. I don't want my baby to have to go through this, I would do ANYTHING to take it all away from her so she could be a normal healthy and happy baby girl. This isn't easy for her either, she is the one that is physically having to go through this, I am complaining and I am just emotionally going through it. She is the one that is suffering not me. I wish I knew what to do or what she wanted me to do.

Well I know everyone was wondering how the appointment went and I hope this explains it all, I tried to make the best sense of it that I could. My head is a little jumbled up with all these questions so this is the best I can do. So just to recap Aryssa is as of now scheduled for surgery on Sept. 8th and she is going to have the swallow study and upper GI test done on July 23rd.