Monday, July 8, 2013

Hope in Mary-land

Whew...what a long and nerve racking drive it was to Maryland to see Dr Magge today. Lots of construction and it took a very long time to get there. Jason and I have both been very emotional leading up to today...and we were feeling like the appointment wasn't going to go the way we wanted it to... especially after getting an email from Dr Magge last night that sounded like he wouldn't be willing to do the endoscopic surgery...but we had to go either way for insurance purposes because if he said no, then we would be approved for Dr Proctor, a stepping stone, more or less, to Boston.

I kept looking for guidance, praying, begging for some kind of clarity in making this decision between the endoscopic surgery or the larger surgery and trying to decide on which Doctor. As we approached the Maryland state border, I looked over and saw the welcome sign...and it just hit me. Welcome to MARY-land is what I saw... Mary is my grandmother that passed away not very long ago and Alice's middle name was also in honor of her, Alice Mary. I couldn't help but feel like it may be meant to be as we drove past the state line. As we anxiously awaited Dr Magge to come in the room, my stomach kept rolling over and over, I was nervous, very nervous. Dr Magge did call me several times this morning before the appointment to talk about Alice, because I had sent some pictures and he let me know that he wanted to try and get a CT today, if possible...but it turned out it couldn't be done today, he said that we could reschedule the appointment to later in the week when we could also do the CT...but I told him we were coming today anyways because we needed an answer TODAY. I already had a great feeling about him from speaking to him on the phone...and Dr Proctor from Boston also told me we were in good hands. He walked in and within the first ten or fifteen minutes Jason and I both thought he was leaning towards not doing the endoscopic surgery and really trying to explain why he should do the larger surgery on her. Then after examining her and talking more he had a change in his tone...he said, I initially thought leading up to this appointment that there was no way I would be able to help her by doing the endoscopic surgery but after seeing that she has a very mild case I am willing to do it....I started tearing up, I tried to hold it back....but I wanted to jump up and hug him. I was so relieved, not only did I have two doctors willing to do it, now I had one that was within 2 hours of my house, which would make return visits so much more convenient and affordable. This is what I have been fighting for...and to know that all my effort, research and work I put into this was all worth it made me feel very proud of myself...

Now, Dr Magge did discuss in great detail the pros and cons of each type of surgery. The endoscopic surgery is less invasive, less blood loss, less hospital stay and less time under anesthesia. The best results are when it is done before 3 months of age, which is why it is hard to find a doctor willing to push that window. But I felt in my heart that Alice was a mild case and that she would benefit from this surgery. She will have to wear a helmet...which will hold back/restrict the side of her skull that has grown outward while allowing the other side that is fused to catch up, so to speak. The helmet therapy may last up to 18 months of age, and I know the helmet may be challenging at first but I feel that it's worth it. The only concern, especially with the type of craniosynostosis that Alice has, is that we won't be happy with her result, appearance wise...but, that is something that we can address later...yes that would require another surgery, a larger one, but there is a chance that the endoscopic surgery could be all that she needs. It's really a case by case thing...and you don't know until a ways down the road. Later, if needed, her brow bone would possibly have to be moved outward. With the larger surgery the skull is physically taken out, reconstructed and smoothed, plates are put on it and then it is put back in (seriously? Just a little overwhelming)..but everything is fixed at once, no helmet therapy for months but a MAJOR reconstructive surgery.

I kept reading on forums from other moms that if they had the option to do the endoscopic surgery they would in a heartbeat, but most of them didn't have the option. That stuck with me...I even called Alice's pediatrician right after the appointment and she said that is what she would choose for her child if given the option. So...that is the plan...and it could be happening as soon as this Friday. I will know for sure tomorrow and will update the blog when I know.

My grandfather, that was married to my grandmother Mary, passed away in September, just 10 months after her...he was cremated and because of various family conflicts we kept putting off the burial of his remains. It has been scheduled for this Friday, July 12th for a while now. After talking to my Aunt Elizabeth, I can't help but find it ironic that Alice's surgery may fall on the same day... maybe this is what he wants ,and that's what is meant to's almost like I had signs from both my Mema and my Grandaddy in the same day, finally giving me some guidance. While I hate to miss the graveside service, if the surgery happens Friday, I know this is what they would both want for Alice Mary.

Thank you Mema and Grandaddy for giving me the clarity and guidance that I needed.

Waiting for Dr Magee to come in and see us