Jojo’s Cranio Adventure – Well my Jojo’s story is a little different than most Cranio stories I have read. We weren’t diagnosed until he was 4 ½ years old and it was kind of stumbled upon.
Jojo was born 9/20/07, 6 weeks early via c-section (due to problems with my pelvis). He was healthy with no problems and came home with me. He is our third little boy.
From the beginning he had a long “peanut” head. I took him to the pediatrician to go over my concerns. He said that he didn’t see a problem that all kids’ heads are shaped differently and his head growth was within normal limits so not to worry about it. He also said to try and keep a hat on him to try and reshape his head if I was that uncomfortable with the way it was shaped. I tried this for a while and it didn’t help at all. After some months I eventually let it go because he was developing normally and no one else seemed to be alarmed about it.
At the age of 2, Jojo started showing some signs that his developmental progress was slowing. By age 3 he was having severe headaches about three times a week. We also noticed that he had stopped growing. For 18 months he wore the same size clothes and shoes. Never gained a pound or grew and inch, even his hair slowed in growth. This is when I really started hounding the doctors to find out what was going on with my son. He was eventually tested for Autism at the age of 4 which showed that he was NOT autistic. With that ruled out we started looking in to more medical reasons as to what was going on with him instead of mental reasons. We went to see a neurologist to see what he could do about his headaches. He gave us a medication to see if it would help and wanted us to come back in 3 months. We were only able to use the medication for 1 month because it was giving him severe stomachaches. So when we went back to see the neurologist he said that that was the only medication he could give him and to do Tylenol or Motrin. This infuriated me. My son was in serious pain and you want me to use Motrin?? Wow!
So after that neurologist I found a new one. She was amazing and she listen to everything we were experiencing (headaches, memory loss, growth issues etc.). She set him up with a CT, MRI, and EEG. CT was clear as was the EEG. The MRI on the other hand showed that he had what is called Chiari Malformation (which means his brain had no more room in the skull and was being pushing into his spinal canal). With this new info she sent us to a neurosurgeon.
Of course once I found out about his condition I researched it like crazy, made list of questions I had and braced myself for the answers. The meeting with the neurosurgeon was completely unexpected. She came in listened to our story looked at the films said “Yes he has Chiari but I’m more concerned with his head shape”. This is when my head along with the room started spinning. Here I was ready and prepared for Chiari and she comes from left field with his head shape! After she explained what she saw she was 99% sure he had Sagittal Craniosynostosis. I was so confused, after the numerous doctors we had been to none, not one doctor ever said his head looked odd to them. So the NS sent us for one final CT to confirm what she already knew. (I think she did it more for my reassurance than hers lol) Of course the CT confirmed what she thought, so from there we were scheduling surgery. The NS explained it to Jojo very simply. She told him that his brain is sad and that she was going fix it and make it a happy brain.
Surgery was scheduled 1 month after seeing the NS. Holy cow things were moving fast. I did as much research and preparation as I could. I was just having a hard time because Jojo was 4 ½ years old and all the stories were of little babies. So I did the best I could to get the family ready. We put on a big car wash in his honor and he loved all the attention he was getting. We were told that surgery would take about 6-8 hours because he was older and the bones were harder and would need more plates and screws.
Surgery Day came 6/8/12. We had to be at the hospital at 5am. He was not happy about that! Pre-op went well for a while once he was ready and waiting is when he stated to get antsy. The OR nurse was amazing. She told him that he was getting ready to fly into space and when they would go back into the room she would put the space mask on him and he would be off to space and when he got back he would have a cool space helmet (the bandage). Even his buddy Mickey Mouse got to go along for the ride and got a matching helmet. When he was wheeled back he started to get very nervous and clingy. I kissed him and told him to have fun in space and I’ll see when you’re done playing.
Surgery went better that expected as it only lasted about 4 ½ hours. When we finally got to see him in PICU, his left eyes was already black and swollen shut. By the next morning both eyes were swollen shut. We had a rough time in PICU. He needed another blood transfusion and additional plasma due to the fact that his drain was filling so quickly from all of the blood draining. He was in a lot of pain and would not eat or drink much at all. I think the entire time we were there he drank maybe two glasses for milk and 1 whole plate of food. By day 3 his entire face had swelled up including his nose and lips. This was the hardest part for me because when I would look at him, I no longer saw my Jojo. The swelling lasted way longer then the doctor predicted and expected we should have gone home on Tuesday but didn’t make it out of there until Friday. We had so much trouble getting him to eat and drink that the doctors didn’t want to take out the IV’s but at the same time they thought that some of the swelling may have been from all the IV fluids as well. So they finally decided to take out all the IV’s and see if the swelling would go down. The doctors came in on Thursday and said that we were waiting on his “meatballs” to open. Finally Friday at 6:30 am he woke me up and said “mommy my meatballs are open”. I looked up and he could barely see out of the left eye but that’s all we needed.
Heading home felt so good after spending a solid week at that hospital. He was so hungry that he asked if we would take him to subway to eat and that’s just what we did. Once we were home we all rested!!! Being at home was not as scary as I thought it was going to be. We all just kind of fell back into the normal routine. For that I was so thankful. His right eye opened the next day. I think it took another week for both eyes to fully be open.
Post op actually has quite fun to be honest. He loves his scar and is not afraid to show it off at all. Every morning he wakes up feeling around for more plates and screws. He thinks he’s a robot and it’s really quite funny. The only problems we have had post op are the slight swelling of the eyes and the fact that they are still black. He is still as active as ever and this has not slowed him in the least bit.
We are currently waiting for our 3 month post op CT to see if the Chiari has resolved itself due to the CVR or if we have to go back under to fix that as well…………
I just want to thank everyone out there that has helped support us on this journey……….thank you to each and every one of you! I could not imagine how hard this would have been without all for your knowledge and support. Love always, Jojo & Heather