Busy...busy...

We have been pretty busy, well more than usual, with doctors appointments, getting ready for Molly's party, Early Intervention and every day life. We had an appointment with the GI doctor on Monday. We had a lot of questions that we had come up with after we met with the general surgeon. I don't know how it's possible that we had any questions left since this is next surgery is all we talk about and think about but we managed to come up with a few more. I think some people might be a little confused about this surgery. This surgery is 100% elective at this time. Some hospitals don't even do this surgery until the person has developed a complication and it needs to be done. Just because we have this surgery done doesn't mean that she won't develop a complication. Her intestines can still twist or block. It is not guaranteed. It's not a "fix" it's a "hopeful preventative procedure". Some people are malrotated and never even know it. You don't show symptoms until something happens if it ever happens. We would be taking a huge risk with this procedure. So we sat down with the GI doctor, Mike Manfredi. He is wicked nice guy. He hasn't seen Molly in about a year and was very surprised to see how great she looks. He even said that you would never know that she's been through all that she's been through which is something I say all the time. If I wasn't scarred for life I wouldn't know she had tortured us all of those months. So our first question was "What is the benefit of doing this procedure if we are going to have to monitor her just as closely after as we do now?". His response was that he is an advocate of this procedure because if you know about it, do something about it. He wasn't in any way trying to force us to do something that we don't want to do. He explained how there is no guaranty it will work or that she won't develop post op complications. We explained to him that from a cardiac standpoint she is amazing, she's not on any cardiac medications other than Asprin and brought him up to speed on her developmental delays. We explained our concerns about how this major abdominal surgery will set her so far back with her standing and walking. We feel that she is months away from walking and this will make it so difficult for her to do. We explained how we have been through so much already and we know what sepsis looks like, how easy it is to develop a blood infection, or any infection really, in a hospital and how that scares us so much. If we hadn't been through all that we have then it might be a different story but we have seen her go through so much and to know we could be in the hospital for an extended period of time isn't what we want to deal with right now. We not only discussed the reasons why we didn't want to move forward. We also explained the reasons why we were for it. We had that scare back in November when she ended up in the hospital. The entire way to the hospital I was thinking to myself "why didn't we do the LADDS?". If she starts vomiting again am I going to feel that way? Probably. But at the same time if we move forward with it and she vomits I'm going to think to myself "why did we put her through all of that if she was going to develop a complication?". See, there isn't an easy answer. They had determined that Molly was malrotated through imaging. It wasn't very clear if she really was or to what extent because the imaging wasn't clear. It's difficult to determine in a child with Heterotaxy because their anatomy is so unique. Molly's liver is midline so it blocks a good portion of her intestines. Jay asked if we did the imaging now would it give us more answers since she is bigger. He is going to speak with the general surgeon to see if that is something he would want but he thought it was a good idea. So we wrapped up the appointment by Dr. Manfredi saying that he thinks we should hold off for now. We have too much doubt and she has been through so much. She hasn't had a break from procedures since she has been home. She was bronched a few times, decannulated, then this recent surgery. He thinks we should take the summer, let her be a kid, put this out of our mind (but keep an eye on her as always) and enjoy her and he will support our decision. I think that's what we needed to hear. Molly doesn't vomit unless there is something wrong. If she vomits we would take her to the ER anyway so we know what to watch for and we will. So we are just waiting to hear back on the further testing but for now it's a no go on the surgery. We also consulted with the cardiac attending that used to take care of her when she was in the CICU and he also supported our decision which made it easier to make the decision. Some people may not agree with our decision but it's a decision that we feel comfortable with and we always make the right decision medically when it comes to Molly. Next up, Growth & Nutrition. SUCH A WASTE OF MY TIME! Our appointment was at 1p. First we speak to the nutritionist. She was happy with where her weight is. She gained a few ounces since the last time and that's what they want her to do. She was gaining too much weight too fast before. We have to cut out one more of her gtube feeds. Right now she gets 3 and we have to cut it back to 2. The hope is that she'll want to drink more and eat more by mouth. I don't know how much more she can eat by mouth since she will only eat yogurt and pureed foods. I feel like her feeding is so controlled and they need to just let her be. Let her progress at her own pace. She's getting the proper nutrition, continues to gain weight and is healthy. Then we waited about a half hour in a tiny room (thank goodness for the ipad) and the doctor came in to go over her history and meds...again! Then we waited about 45 minutes. At this point it was about 3p and Molly had fallen asleep. The feeding specialist came in and wanted to see her eat. No way was I waking her up and she wouldn't do it anyway. She didn't have anything to add and didn't have any ideas. I know that Molly is a unique case but I find it so hard to believe that she is the only kid that has trouble coming off of purees. So now they want to add a behavioral specialist to see if they have any ideas. I am so close to saying, forget it I'll do it myself because I've been doing it anyway and got her this far. Anyway, she's in the 7th percentile for weight, almost on the chart for her height and weight for height she's in the 73rd percentile. Like everything else, she will catch up! So for now we are going to get back to our party planning and enjoy every second of our Molly time! We just love her so much and want to make sure we are doing the best thing for her! Kerry