Tuesday, January 24, 2012

insurance driving me CRAZY ****UPDATE

I swear to God that I may explode today. I called my insurance today just to check the status to see if it was pre authorized or not, and they tell me that they have not received ANY information from my doctors office. I call my doctors office and they said they sent it to a fax number that insurance told them to send it to.

My doctors office said when they called insurance on Dec 3, that they told them to fax it in Jan cuz its the holidays (?) so my docs office spoke to insurance again in Jan and the they told docs office to fax it. That was Jan 3. I figured its been 3 wks so lets see whats going on..SO nothing is going on!! Ive been waiting for nothing! first my insurance gets cancelled and now this! I was crying so hard cuz it seems like this is starting out bad. and you know when things start out bad they usually end up bad. like are these signs that I'm making a bad decision on doing surgery?? I. am. going. crazy.

****UPDATE. it was the wrong fax number smh. Now we wait

Monday, January 16, 2012

My son and his cranio surgery

Reading all this stuff about surgery and screws and swelling and what not, takes me back to the time my son had cranio surgery.  I thought it would be helpful to share his story and the major surgery he went through to understand recovery time dealing with bone healing.

Also, the courage and strength one is capable of.

When my son was born, we noticed an odd shape to his forehead. I've read that babies can have irregular head shapes while in the womb and especially during vaginal delivery because of the compression going through the birth canal, so i wasn't really worried.

 As weeks and months past, everyone would constantly tell me that his head didn't look right. Especially my mother. She would nag me all the time to get it checked out. I would just tell her, ''I have a huge forehead so he just has my genetics.''

When  he was 5 months old, I felt a ridge going from the middle of his hairline down to between his eyes. I was like ok maybe I really do need to ask about this...now this is not normal.  I took him to his pediatrician right away and she felt his forehead  and was like ''hmmmm that's weird'' ......right then, my heart sank.  She called the other doctor in. She also checked him out and said ''I think his soft spot closed, but I'm not sure. He needs a cat scan to make sure. And if it did in fact close, then he would need surgery to....and I quote ''make a hole in his head'' I freaked out!  What a harsh way of putting it. I mean a hole??? She wasn't even correct. In actuality, they would have to cut into the bone (much like jaw surgery) to relieve pressure to the brain, and in his case, reshape his skull/forehead. his brain would even be exposed during the whole thing while they are working on the pieces of bone and screws on a table. can you imagine?

I was devastated. How can this poor little thing go through such a complicated major surgery? I just kept hoping that he wouldn't have to and that he was fine.

We took him to get a cat scan. After it, they said a doctor of that hospital would call me in a few days with the results. We anxiously waited for that phone call. I was somewhat optimistic. When I finally got the call, I remember crossing my fingers and closing my eyes listening to her speak.  She told me that he was fine! And that he didn't need surgery! I remember the relief I felt! I was so happy! She said she would send me the results in the mail.

A few hours later, something didn't sit right with me. I just had this weird feeling in my gut. I didn't understand why? I just heard the greatest news and was confused why I felt that way.  I guess I felt what is called motherly instincts. I decided to call a different pediatrician and get a second opinion. I now had the results in my hand, which read how his bones had fused and was normal at the age of 5 months.  I also went to the hospital to pick up the cat scans. I took both of these things and my baby to a new pediatrician. Dr. Khosla.  He told me that he couldn't read cat scans and that a neurologist needs to read them. But he took the paper with the results and read it. He just stared at it.  All of a sudden, he just left the room, without even saying a word. I thought wow that was rude. I just sat there for a couple minutes and finally opened the door to look outside the room. I walked out a bit and seen him sitting on his desk in his office, flipping through a big book and just reading quietly. Confused, I just go back in my room to my son and just waited. He finally comes in and reads the results on the paper again. He looks at me and tells me ''this is normal at the age of 5 years, not 5 months like it says.''

Wow just that one word changed everything. They told me he didn't need surgery because someone had mistaken 1 WORD!

Dr Khosla then tells me that he definitely needs surgery and this is usually done at an infants age around 4-6 months old and that there was a crunch in time since he already is 5 months old. He said  to make an appt as soon as possible and that it has to be done before the age of 1 year.

I just have to give thanks and the utmost appreciation to Dr kholsa. He is the greatest pediatrician and a great man. He recently passed away from cancer and I know he must be in heaven now. He has changed my life and especially my sons. He has helped us and helped so many ppl. He even worked during his last months of his life. This man wasn't just doing a job, he was a life saver. Even when I tried making an appt for my son to see the surgeons, and they said their next opening, just for a consult, would be 1 YEAR from now, Dr khosla personally called himself and I had an appt in 3 weeks. What an amazing person he was. May he rest in peace.

getting back to the surgery (and I'm sorry if this is so long)

His diagnosis was he had craniosynostosis. There are many types. He had metopic synostosis also known as triginocephaly.

Craniosynostosis  is a condition in which one or more sutures in an infant skull prematurely fuses by ossification, thereby changing the growth pattern of the skull. Because the skull cannot expand perpendicular to the fused suture, it compensates by growing more in the direction parallel to the closed sutures. Sometimes the resulting growth pattern provides the necessary space for the growing brain, but results in an abnormal head shape and abnormal facial features. In cases in which the compensation does not effectively provide enough space for the growing brain, craniosynostosis results in increased intracranial pressure leading possibly to visual impairment, sleeping impairment, eating difficulties, or an impairment of mental development combined with a significant reduction in IQ. Chances of these conditions may be reduced or eliminated if treated.

Craniosynostosis occurs in one in 2000 births.

Here are some pics of examples that maybe can explain what was done. Pretty graphic (not for the queasy)




*These pictures are not mine. This is not my child




My son was exactly 13 months old when he had his surgery. He had an incision from ear to ear and still has the scar. The surgery I think took about 8 hours.  I will never forget that day.


As for recovery. My son swelled up sooo much that he couldn't breath on his own. He had to have a breathing tube and that was so scary because he would choke constantly and his body would shake. He was on high doses of morphine and was sleeping for 4 days straight. When he finally woke up, he couldn't sit up or walk anymore temporarily for a few days because the weight of his head. That's how swollen he was. His eyes were swollen shut too. I cant believe he went through something like that. Waking up and not being able to see me.  They told me he would be swollen for 3 weeks. He actually didn't start to look normal till 2-3 months later! And I can say, all of his swelling was completely gone by 6-8 months. So anyone who just had or will have orthognathic surgery, I will tell you 2 things. One...swelling will take a really really really long time to completely go away.  Even when I thought my sons swelling was gone I would quickly realize, I was wrong. It just takes time. I know his surgery may have been a little more complicated but I think its similar in some ways. Number two....(and this is something I am telling my self) If a 1 year old can go through all of that, then an adult can go through jaw surgery.

My son gives me strength. He taught me to be more strong in so many ways. He taught me that you have to be patient and act like nothing even happened, like how a child acts.(easier said than done) I'm sure he was confused and in pain, but I feel like children are stronger mentally. Maybe because they are somewhat oblivious. I know I woulda been crying like a sissy if I was in his shoes, lol. I don't know. But on a serious note, his story also gave me the courage to have my surgery.
He is now 6 yrs old and is beautiful! He is a lucky, happy, healthy boy!

And I'm so lucky to have him :)

Friday, January 6, 2012

PICTURES AND MY THOUGHTS


I THINK THIS LOOKS MORE THAN 5MM BUT I GUESS WE'LL KNOW FOR SURE AFTER THE MOLDS ARE DONE. AND I CANT REALLY GET A GOOD SHOT STRAIGHT UP WITH MY CAMERA. DONT MIND THAT CHUNKY TOOTH ON THE BOTTOM. THATS A CROWN THAT WAS DONE IN THE 90'S NICKNAMED ''CORN''



 I SEE A LOT OF ASYMMETRY IN MY LOWER JAW AND A SLIGHT CANT IN MY UPPER JAW. MY OS DOESNT SEEM CONCERNED AND IT WORRIES ME. IVE BROUGHT IT UP 2 OR 3 TIMES BUT HE SAYS WHEN I BITE DOWN IT DOESNT DO THAT. AND THAT I AM JUTTING MY JAW FORWARD WHICH IS NOT NATURAL. I DO GET PAIN AND CONTINOUS CLICKING IN MY RIGHT JOINT (YOUR LEFT)




IT SUCKS WHEN YOUR GUMS ARE BIGGER THAN YOUR TEETH :/