4 Weeks Post-Op Today!

I cant even believe how quickly time has gone by. It was 4 weeks ago today that we were all sitting at PCH anxiously waiting to hear he is out of surgery and recovering well. It is such a blur looking back but not out of my mind one bit. I find myself consumed by researching craniosynostosis because I want to learn everything I can about it.

Keegan's medical records came in the mail yesterday and today from both surgeons. It was very interesting reading all the reports during the surgery. Both surgeons explained in detail what they did. Dr. Joganic (the artist of Keegan's skull) explained the subtotal cranial vault reconstruction.  He expanded the frontal region with radially oriented cuts into the frontal prominence. Then it was reconstructed with transversely oriented elliptical flaps and the shortened the overhang and widened the occipital region. He explained that he used radial cuts in the occipital region as well to decrease the frontal bossing.

At his June 8th appointment he says "staples are out, cranial vault is stable, no open areas are palpable. His cranial index is .77 with NOP 171 (length) and EUEU 133 (width). He seems to be doing quite well and is back to his usual activity. He is actually now walking. He is not irritable, is very active and is eating well. It appears as though he will have a good long-term result. The frontal bossing is moderate although the temporal fossa is expanding rapidly".

I mistakenly got the index wrong in my previous post. However, his index before was .65. NOP was 185 and EUEU was 120. This is still great progress in his head dimensions. Plus, his smarty-pants brain now has more room to grow!

Here are some pictures I took today to show his recover so far (4 weeks!)

I did find some interesting groups on Facebook along with interesting research studies online. 1 interesting thing I found was that a research group from UC David and Washington found a link in intrauterine space constraints and craniosynostosis. This intrigued me because my OB, Dr. Braget, mentioned how tight Keegan was in there towards the end of my pregnancy. Also, when I had my C-Section they found that I had adhesions (all of my insides were stuck together). They repaired the adhesions and  I hope they stay apart. However, menstruation cramps before and after the pregnancy have always been very painful and back pain associated. This leads me to wonder if I have endometriosis?? Furthermore, it makes me wonder if this is part of Keegan's craniosynostosis or just a coincidence? Is it genetic? No one seems to have an exact answer. I hate not having answers for my curious mind. I like to know how things work and why they work that way.

I hope to raise awareness of this condition and urge self- advocacy for a child's medical care. Keegan has been recovering amazingly and handled the surgery well; however, if it was caught earlier he could have went through a less-invasive endoscopic procedure.

Until next time.... signing off

♥ ,

Tara