Wednesday, August 25, 2010
I’ve been meaning to update my blog; however every time I go to do so I think that I’ll wait a few days longer in the hopes I’ll have more information. At this rate, sticking to that logic, I quite possibly might not have been able to update this blog again until Ethan is at least 18 years old. I say that in jest but it has been a very frustrating time of hurry up and wait. Let me rewind a few days and give you an update on the MRI we had last Wednesday. Everything with the MRI went smoothly. Dr Magee’s office called me Thursday afternoon and told me that they wouldn’t have the results until Friday at the earliest. I was obviously very anxious so late in the day I called the Baylor radiology film lab and they told me that they would have a copy of my report ready first thing Friday morning. Jason and I go over there together Friday around 11am to pick up the report and attempting to decipher all the medical jargon was a bit harder than I expected; however the last line was the most important- “Dandy Walker not strongly suggested”. This is important because DW is certainly the worst case scenario. The incidence of babies that are born with DW is 1:25,000- that puts it at about only .004% of babies born in the US every year are born with Dandy Walker. This is primarily due to the fact that a large portion of babies with this affliction either pass away in utero or are terminated by the parents because of the tragic prognosis it presents for the unborn baby. So anyway, Dr Magee’s office calls me late Friday afternoon, not knowing that I now have a copy of this report myself, and tell me that yes, it appears that it isnt DW, sure this is good, but we still want you to do this follow up MRI with Dr Rollins on Sept 2nd. That is basically all his nurse told me. I was obviously still relieved that this apparently wasn’t DW so I didn’t think about their response much. As the weekend wore on I gradually got more and more upset. By the time that this next Fetal MRI rolled around on September 2nd, it will have been almost 4 WEEKS since I have seen or spoken to my doctor. This, from a doctor that just two weeks ago was working with such a sense of urgency. I became very frustrated with the lack of communication so I decided on Sunday that I would call around first thing Monday morning and search for a doctor that would be willing to give me a second opinion. This too, proved to be more difficult than I expected. The first issue is that in the entire D/FW metroplex there appears to be less than 25 doctors that specialize in Maternal & Fetal Medicine (perinatologists) and none of them will bring you in for an appointment without a referral from your OB. I repeatedly called my OBs office Monday to try and get that referral for a second opinion; however they weren’t willing to comply with my request. They felt like Dr Magee was doing what was expected of him and that I was getting the best care possible. I was incensed that any doctor thought it was acceptable to let 4 weeks pass before talking to a patient that was carrying a baby with a potentially fatal condition. I have heard nothing from either doctor and even the nurses are not responsive. Everything seems to require 2 or 3 calls to their office before they respond. They aren’t telling me what this all could be, if not DW, but they weren’t telling me that I could kick back and relax either. My biggest issue is that they weren’t telling me ANYTHING. I felt like my hands were tied but I still felt strongly that I needed a second opinion so I decided that I would call another OB that I have used in the past to at least get his opinion on what is going on. He is in the Arlington area and is an older gentlemen with a huge practice , meaning he has TONS of experience. In the limited times that I had to visit with him in my earlier non-child bearing years he also came across as very much an arrogant, straight shooter. That is exactly what I needed and wanted right now. I will mention really quickly that he is also a die-hard Aggie. Anyway, so Jason and I had this appt with Dr Seligman yesterday. It didn’t start off well when our original appointment was at 11am and at 12:30pm they told us that they would have to push all our appointments back because he got pulled into an emergency at the hospital. Anybody that knows Jason knows that after sitting there in the lobby for the first 1 ½ hours he wasn’t starting off with a great first impression of Dr Seligman. Let me tell you that that all changed once we started our visit with him. I told him what had been going on and what we had been put through. He immediately got us back in to see his sonographer who did an ultrasound. The fluid in the back of Ethan’s brain is still there, but the good news is that it doesn’t seem to be getting worse. Then Dr Seligman got on the phone and tracked down the perinatologist (Dr Goldaber) that he refers his patients to. He ran down our history and the earlier MRI findings to him and asked him how he would have Dr Seligman proceed if I opted to change the remainder of my maternity care to him. Dr Goldaber suggested that I go to UT Southwestern to get a follow MRI done. He gave Dr Seligman the phone number and name of the person to call at UTSW to get it scheduled and suggested Dr Seligman use his name to get me in more quickly. Dr Seligman immediately sat me down with his Office Coordinator and had her call and get the appointment scheduled. They didn’t send me home and tell me that they’ll call me later once the appointment is scheduled, which seems to be the process for other doctors. In fact, Dr Seligman told me that I could not leave until Debbie had the appointment scheduled and I had everything I needed. The MRI appointment at UTSW is scheduled for Thursday morning at 9am. Dr Seligman also scheduled me for a follow up appointment with him next Wednesday; however he assured me that I would hear from him before then. In fact, he said that if the doctors at UTSW told me that they could give my doctor a verbal review of the MRI ahead of the written report that I should call his office and let them know. He said he would call over to UTSW and get the verbal results and call me as soon as possible. Considering the day that he had already had, he was attentive and listened to all my concerns and questions. I can’t tell you what a blessing it was yesterday to have someone in the medical profession listen to Jason and I and understand the hell that we have been through. I know without a doubt that this is the where the rest of my maternity care should reside. Dr Seligman said that its likely I would have to meet with Dr Goldaber through the remainder of the pregnancy and he warned me that he is a typical “pain in the ass”, academic doctor. LOL! But he also told me don’t worry, we will use Dr Goldaber only for what he has between his ears and that he would be responsible for all the warm and fuzzy stuff. Dr Seligman said that he hopes within the next week we are able to collect all of this information and allow me to kick my feet up and enjoy some of this pregnancy. This too, is what we are praying for, but right now I am so thankful for the events that transpired yesterday. It truly was nothing short of a miracle in of itself. Dr Seligman’s office called me yesterday evening and told me that my insurance company was putting our request for another MRI through a review that takes 48-72 hours and unfortunately that might require that Thursday’s MRI appointment be rescheduled; however just two minutes ago I received a call from the doctor’s office that the insurance has called back and that I don’t require a pre-certification after all. We are all clear. So I guess that is all the information I have at this time. I apologize for the long update; however there has been a LOT going on. I ask for your continued prayers for our family and Baby Ethan’s brain. I really feel confident that within the next week, possibly sooner, we will have a clear understanding of what is going on and what the plan for the remainder of the pregnancy is. This is the first time in a few weeks that I feel confident of where we are and hopeful for what is to come.
Posted by RameyRamblings at 9:11 AM