Now about the last appointment we went to.. we made the trip 4 hours away to see a Pediatric Cardiologist and Pediatric Heart Surgeon. This is the surgeon, I referred to in my last post. The surgeon I have heard and read so many amazing things about from the beginning. From day 1 we felt a bit pressured to go to certain places, as if we didn't have a choice.. anytime we mentioned this Dr. 4 hours away they would just question us.. why, why would you do that when you have 2 great locations an hour away. With Bentley being so healthy since day 1, I guess you could say I have been in denial about her heart condition. I have always been a mess emotionally but I have been in denial at the same time. Our December appointment with the "old" Dr. , they decided to go ahead and schedule her heart surgery for Jan. 27.
The day they called and told me about her scheduled date.. I went into panic mode. It finally set in that this is going to happen.. she really does have this heart condition and my baby girl is really going to have to go through this. So I remembered the "amazing" Dr. from the beginning.. I had already researched so much about this surgeon.. but finding out about the surgery date really made me sit down and think about what WE really want to do and who WE really want to perform open heart surgery on our daughter. So I immediatley "googled" this surgeon again. Let me just tell you.. for starters the childrens hospital we have decided to go with is about 4 hours away. This hospital is ranked #6 best childrens hospital in the US. Yes, that's right #6, just amazing! Let's break it down a little more.. this hospitals heart and heart surgery center is rank #3 best in the US! Absolutley amazing! I was in awe when I read this information. So now about the surgeon.. he is the "cheif surgeon" at this childrens hospital (the largest childrens hospital in the nation), "cheif pediatric surgeon at a well know medical college, he holds many awards, he has implanted the world's first DeBakey Child™ cardiac assist device (which is like a man made pump, no Bentley will not need this but it is pretty amazing he accomplished this), he is author in over 100 articles and medical textbooks, and he and his team has performed over 6,000 pediatric cardiac repairs and surgeies in children (this number is from an older article I found so it is well over 6,000). I cannot tell you how much I admire this man. His accomplishments absolutley amaze me! Oh, and I forget to mention he has been featured on THE DISCOVERY CHANNEL for saving lives! So after reading all of this time and time again, I called to schedule an appointment. The receptionist immeditaly transfered me to his nurse and I explained to her everything that was going on. We then had Bentley's echos and reports mailed to this Dr. and nurse. Within a week I got a suprise phone call from none other than the Dr. himself. Can you believe this super busy Dr. took time to call me personally when we are not even patients yet. He just wanted to let me know that he has received the information and viewed her echo. He agreed with the other cardiologist and said he would love to see Bentley if that is what we wanted to do. I just have to tell you.. I was in such shock I was stuttering and nervous.. so I'm telling him how I became familiar with him and then I decided to tell him "I just can't get you off my mind, I'm always thinking about you!" HA!! After I said it I know I sounded like a freak. I probably scared him, it totally came out in a weird way. Back to the suprise phone call. I can't even get my regular family Dr. call me, and this Dr. did. I was blown away. I spoke with his nurse and said yes, lets do it set us up for an appointment as soon as possible. She said to get an appointment with the cardologist and surgeon in the same day would take a while (at least a month away because they are so big), and Bentley health wise would be fine to wait. This wasn't working for me.. I told her no big deal, schedule us for 2 seperate days we'll drive we don't care at all. So she scheduled her cardiologist appointment for Jan. 16, and we were waiting to hear an appointment date to consult with the surgeon. When she called to tell me about that appointment, she said that the surgeon agreed to see Bentley on the same day Jan. 16, let me tell you just how nice he is.. Jan. 16 was a day that he does not see patients. He saw my baby girl when his office is not even open. I just couldn't believe how wonderful these people were. They seriously have bent over backwards for us. I am SO thankful we made this move. The appointment went just as well. Cardiologist agreed with what the other 2 have said only he did give us more information about it, the surgeon told us what we could expect from the beginning to end. We did not even have a chance to ask questions because he told us EVERYTHING before we could even ask. It was perfect, everything about this day went well. I for the first time since we found out about Bentley's heart felt that everything is going to be alright! We learned so much at this appointment.. we found out that Bentley will need a blood transfusion. I was not aware of this, so it scared me a bit. Then he told me that as long as we were a match Ryan and I could donate our own blood to her. How amazing is that. I do know that Bentley and myself are a perfect match. I am going to get ours tested again just to be sure. So I will be giving Bentley some of my blood for her surgery. We are still going to get Ryan's checked so we can have extra. This made me feel so good that I am going to be able to do this for my baby girl. I have donated blood in the past but have been turned down a couple of times because of being low on iron. So I am really gong to have to get it together for this big day! I feel so good to do this for her. With that said, it really opens my eyes on the importance of donating blood. Many many people do not have the opportunity to donate blood to their child for many different reasons. So in the case they depend on the blood bank in the hospital which comes from very generous people. This is another one of those things you don't think about until it happens to you. I have donated blood a couple times before and I never thought it was a big deal, but now looking back, there is someone out there with my blood! I will definetly be donating blood on a normal basis. It is needed. Back to the appontment.. I know I have posted a lot and I am leaving a lot of information out of this post but I have to end it somewhere. So if you have any questions, let me know. I really do not mind answering them.
As far as our upcoming dates.. both the cardiologist and the surgeon agree it will be best to perform the surgery in April or May. I was happy. This was good news. Even more good news.. remember how heart babies are seen about every 4 weeks, but Bentley has been seen every 8 weeks because of doing so well. They have informed us that she will not need to be seen until the surgery. YAY!! GO BENTLEY GO BENTLEY!! This is a blessing.. for Bentley to have this condition and be able to go this long without being seen is absolutley a miracle itself. This is just unheard of. All the Drs. tell me time and time again how blessed we are that Bentley does not have any symptoms. They continue to tell me how sick most babies with TOF are. I tell them I know, that is what the last Dr. said.. and they say "NO" you have no idea. They tell me I have never seen another baby that has this I don't know how it really is, all babies are different, they see it all day everyday. I truley believe this is a miracle itself, I am so thankful for this. I could not be more proud of Bentley, I love this girl to pieces!!!!
So now.. we sit and wait. We sit and wait for the surgeon's office to call us with a surgery date.
Sorry such a long post I just want to let you know how amazing this place is. Thank you for all your love and support. Please keep Bentley in your prayers.
Blessings,
Crystal
