Jan 23, 2011 Latest post:
Nov 20, 2016
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This page is dedicated to my son JJ. JJ is 9 and most of you visiting know his story. But I would like to recap it. JJ was born Nov 27, 2001. He started his life in ICU and has really known nothing but the hospital. He was diagnosed with Craniostynosis of the Metatopic suture at birth and that is where his journey has started....
At 7 months old he had his first reconstruction with disolvable plates installed that were told hold the skull in place for six-twelve months and then disolve away. After a year or so we noticed lumps and bumps all over his head and he was moved into emergency surgery. When they came out they said the plates did not dissolve and they were encapsalated in sacks made by the body and did not work thus needing another reconstruction this time with titanium plates. Doctors did not feel comfortable leaving the titanium plates in so they eventually went back in to remove the plates.
Over a few years he developed more and more behavior issues which became more and more frequent as well as not sleeping much if at all. With much pushing and insisting JJ unter went ICP to check his pressure. This consists of drilling thru the skull and placing a wire to measure over 48 hrs in ICU. Again his pressure was 30-40 and JJ had to undergo another reconstruction surgery, which was in March of 2010. When they were done with the surgery the team informed us that was the biggest expansion on the skull they have ever done. JJ was a new kid sleeping eating and smiling. Within a month things changed again JJ was having headaches everynight not sleeping left sided weakness and behavior issues again. Another ICP was performed and it was normal.
Several months have passed since his surgery and I didnt give up on JJ we finally had a special MRI done and another spinal tap and they found that he had a new diagnosis of CHIARI Malformation type 1. This was in December of 2010 he has been in a neck brace24/7 since that diagnosis for approx. 5 weeks. THE ROLLERCOASTER begins. So after a month of researching CHIARI and coming to a understanding of it we had a follow up with our Dr. to discuss the next step and surgery dates. After meeting witht the DR. he wanted a speciality XRAY to rule out something specific and assured us not to worry just needs to do routine before his surgery. After we had hsi xray the nurse imeediately meet us and told us not to leave Dr. wants to meet with us again. When going back into the room there were 6 drs and our DR informed us that JJ's xray was not good news and he paged another dr to come meet us. So after 9 years 4 12 hr head surgeries several sedations 2 diagnosis we are told JJ has congentail C1 C2 atlantoaxialsubluxation. Meaning that his C1 and C2 do not connect. (like having a broken neck) At this point things started moving fast for us. The drs have us coming on Mon for a CT scan to check to see if the back of the skull bone is also having issues if this is the case JJ will be in Tues morning for surgery. Otherwise the C1 and C2 surgery will be within the next 2weeks if not sooner. The Drs have put the CHIARI on the back burner for now but there was mention that they could do that surgery at the same time. They also informed us that they would have ot take his bottome rib from his back to use for the fusion and then they will use bolts and plates also. JJ will have a very tough recovery compared to his other surgeries.
This has been a rollercoaster of emotions as his mother for the last three days. Very glad they have found this and it is our miracle we have been waiting for but i would never imagine the pain that he has endured for the last 9 years that he has not been able to tell us about. He is a very stron boy and taking it all in strides. Matter of fact his new Dr's name is Dr. Bragg JJ asked if she bragged alot haha!! So again please keep JJ in your prayers he has another journey ahead of him the next couple f weeks until we know when surgery is and then his recovery road.