Monday, April 19, 2010

Nuttin new in our world....

There is not much new going on in our world. J makes slow steady progress. His last day of school is May 28. He will do Extended school year from June 22 to July 22, Tuesday, Wednesday and Thursday from 8:30am to 11:30pm. Then they normally have a 2 week camp for children with autism, although Jeremy is not diagnosed with autism along with his FG syndrome comes the tendencies. I was excited that his Para-professional at school wants to be his HTS over the summer, so we will have someone who knows Jeremy, knows how to work with him so that will be a relief. We are so enjoy the nice Okie land weather, it's been a nice, spring, J loves playing outside.....

Thursday, April 1, 2010

Surgery plans and dates...

I have been at a disadvantage trying to get all the details about the surgery and recovery over emails. We could have made an appointment and went down to see Dr. Dan for a face to face appointment but that would be another trip to Columbia, MO. Holly, his medical assistant has been totally AWESOME to get with Dr. Dan and get all my questions answered. I believe at this point, I'm good, have all my questions answered and understand the plan.

When we go down on July 16, we have a 1pm Pre-op appt. We will do another X-ray, Mike will measure Jeremy for his brace, we will see the Nurse Practitioner who will do a work up and then Dr. Dan wants to see Jeremy. We will go down the hall and take care of the hospital side of the surgery @ 2:15pm.

We are going down on August 5 and will meet Dr. Ramachandran for a 3pm appointment, he will assist Dr. Dan with his anterior surgery, he wanted to meet us before surgery. Jeremy’s first surgery, August 6 is for the kyphosis and to straighten the spine. Jeremy will have a halo and be in traction, I have seen pictures and they do attach the halo to the skull but this is to prevent Jeremy from moving and keep the spine straight. Jeremy will be in PICU pretty much sedated and will not be up moving around between the first and second surgery.

Jeremy’s second surgery on August 13 is to fuse the spine, Dr. Kuhns will assist Dr. Dan with this surgery. This will be a total fusion so he will not grow in the torso after this surgery. He will be put in his back brace be on pain medicine and about the 3rd to 4th day they will start getting him up and moving around. I have visited with numerous families and the first several days are very painful and they are on morphine pain medicine but then around the 3rd day most are ready to start getting up. The PT will get Jeremy up and moving around before we come home so that I will know what to expect. Jeremy will not go home on high dose levels of pain medicine and will not be on nursing level of care. I am estimating if all goes well we will be home before the weekend of August 21. J’s school starts around the 19th but I plan to keep him home and give him the time to recover and he will start school after Labor day. He will have some restrictions of no jumping and lifting none of which Jeremy really does, he does do his occasional look at me little mini-jump that is so darn cute. I have talked to families who have typical children who have had the surgery and they can voice their discomfort and pain, these are children who play basketball, football, cheerleaders and they do fine.

We will then follow up with Dr. Dan in 6 weeks after surgery, and then we will continue to follow-up with Dr. Dan as he tells us to.