Tuesday, March 27, 2012

Metopic Ridge and it is gone...

Charlie now at 27 months old and 21 months post surgery.


PLEASE IF YOU HAVE ANY QUESTIONS AT ALL JUST ASK. I WILL BE GLAD TO HELP IF I CAN. THESE PICTURES ARE DISTURBING BUT THE OUTCOME HAS BEEN GREAT AND CHARLIE IS A HAPPY AND HEALTHY LITTLE DAREDEVIL. THE 
QUESTION A LOT OF PEOPLE ASK IS WHY POST THESE PICTURES AND IT'S SIMPLE. WHEN WE KNEW WHAT SURGERY HE WAS HAVING I LOOKED IT UP LIKE YOU AND WAS FULL OF INFO BUT NOTHING OF WHAT REALLY TO EXPECT. SO IT'S NOT TO SCARE YOU BUT TO PREPARE YOU OF WHAT THE HEALING LOOKS LIKE AND MAYBE NOT FEAR IT SO MUCH.

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 Picture above is Pre-surgey and you can clearly see the head is triangulated and not growing and making the right amount of room for the eyes and brain.
 Four hours post-op and he was resting comfortable while the wife and I were panicking inside and crying. Everyone kept saying he looks really good and we were kind of  like "oh yeah, OK if you think so" and I think it was just to keep us calm.
 Day 2 and his Hemoglobin was dropping and we were holding a steady fever. Almost at his max swelling as his shiny forehead dictates.  
 Day 3 and fever was sticking around and the hemoglobin dropping more and he got very sluggish but would still eat. He started out at a 11.8 and went down to a 6.6 and they gave him more blood. His little feet were white and cold and with a fever of a 101 range. This had me freaking out because when the kids have fevers normally their feet always seem like the hottest part.
 They gave him more blood and it made a huge rebound in his color and liveliness, pink again and wanting us.
 
 Day 4 in the morning and the fever still around but the hemoglobin back to a 9.6. The doctors being cautious had a blood and urine test done along with a chest x-ray. Of course when all the test were done the fever went away.
When I showed up Kathy had him upright in the hospital stroller sleeping and I bent over and looked and him. I must of made some sound and I noticed his right eye was peeking open and I quietly said hello to him and he instantly bust out in a cry. It was so nice to see his blue eyes again and I quickly stole him from the wife and walked the hospital floor so he could have a look around. He was smiling at people who would pass us in the hallway so he must of been comfortable.
 His other eye was open before the end of the day and really getting back to his old self of not letting Mom get any rest. I swear even the morphine that they were giving him the first 24 hours didn't slow him down much.
Day 5 locked and loaded for the ride home. A bit scary looking with the bandages off but what a stitch job.

I can't say enough about the wife for staying at the hospital and having a huge lack of sleep for all that time.
The one thing that is haunting me is all the children who were there and are struggling with problems that might never go away or will cut their time short. I feel the huge need to do something with the hospital and doing their benefit/fund raising programs.
I'm gonna keep posting pictures here as his head looks more normal so other parents can come here to see what to expect.                                                                                                                 
                            
Here we are at day 9 and looking really great and a lot different in personality. He's sleeping all night now and is all smiles during the day. I couldn't catch a smile with the camera because he was so interested in it he was impossible to distract.


 These shots are a full two weeks out of surgery and he is looking so great. He now looks like all my other kids and we are so happy.



After & Before
So here we are at almost three months out of surgery and WOW what a change. I look back at the before pictures and see now how off his head and eye spacing was. Also his whole problem of being grumpy is gone and Charlie has become so laid back. His head post surgery was at 30% in the growth chart and is now over the 90%






Wednesday, March 14, 2012

Number 4 and Metopic Ridge.......

 Other than motorcycles in life I have four kids and number four came along last September 23rd.
All health except for his poor head. I noticed it when I first held him and touched his forehead that it felt like the two front plates of his skull were over lapping and none of the other kids ever had this.
On the one month visit the Doc didn't mention anything so on the two month check-up I asked the wife to bring it up. We were told to bring him to a neurologist and get him evaluated for Metopic Ridge. The wait alone was rough to see Dr.Bowman out of Chicago Children's memorial hospital. The best part was we have a friend who was a nurse for Childrens and told us the plastic surgeon who remove a birth mark off of our second daughter has taken this up as "his baby" of surgery's.
 So after visiting both Doc's we have a date for March 23rd. The good in all of this has been friends wanting to get in on blood donations. Even people I just kind of know want help out and that's what really shocked me. It's nice to see. The other huge positives are on a level of one to ten Charlie is a four with no neurological damage and his eye sockets are round with no droop.
I think the biggest stress so far is me freaking out he's going to get sick and get a pushed back surgery date and that might mess up all the blood that has been setup. I guess a baby's blood factors can change and he needs to get a blood test two days pre-op to see what donation will be used. So yeah a delay is not wanted. 
If you find this page and have a kid with a skull issue go to Cranio Kids forum it will help. For now it's about eight days out and it can't come soon enough and just wish Charlie the best.