I am so pleased to have found this group! My son has chiari malformation and spinal syrinx and is going to have surgery with Dr Ellenbogen at Seattle Children's in August. I am looking for information on what to expect post op. School starts three weeks after his surgery so I am wondering what other's experience is in terms of heading back to school/work.
We have known about his condition for a while but up until now we had been advised to watch and wait so it has come as somewhat of a shock to actually have surgery coming up in a couple of months.
If anyone has specific knowledge about Dr E. or Children's please share but really I am just looking for nay general info about what to expect post op for my little guy. I am currently terrified but hopeful that learning more about what to expect will put me more at ease.
EGmom, I am sorry you and your son are going through this. I have heard great things about dr Ellenbogen though :). I am hoping other parents will chime in here with their experiences, we have lots of parents on this site. We also have a group for parents- look under the “groups” tab. I can tell you that every person is different with their recovery- children included- but the little ones tend to bounce back quicker then adults do. Three weeks may be too soon to go back to school. I would leave the recovery time open ended, and if he is ready on the first day of school then great,but be prepared that he may need more time. This recovery is not something that should be rushed. Prayers and love to you and your little man.
I have experience with Seattle Children's through two different children and Dr. E for one of those children.
One of my step-daughters has a rare genetic disorder that was diagnosed by the genetic department at Seattle Children's. We did not have the best experience with them. My suggestion to you is IF you feel your child's issues are not being addressed push the (forget the name of it now) button on the wall by the door. It will bring a team of doctors (doc's on duty not necessarily your child's docs) in to address your concerns about your child. When you are first brought to your room they do explain about the button to you. I also want to clarify that our issues with Seattle Children's was not the doctors or nurses but rather the social workers. The nurse was great at supporting my step-daughter and even ordered the social worker out of her room when DD told her nurse she was not comfortable and was upset.
My daughter (16 at the time) had her surgery at Mary Bridge Children's and we had a great experience there. We did have a consult with Dr. E and it was fabulous. DD really liked that Dr. E addressed HER, took what she had to say and what her symptoms were seriously and only asked parents for clarification. Your son is much younger so your experience will probably be more parent led rather than child led.
After DD's surgery she had no school (it was summer so easier for us) for 6 weeks and no P.E. for four months but DD had a lot of issues with throwing up and headaches, balance, blurry/double vision post surgery. For what I have gathered on various support forums younger children tend to heal faster, however realize that your situation will be YOURS, and be prepared for it to not be like others. If the school has any forms that you will need (i.e. IEP or 504 Plan) to verify your sons limitations take them with you to the hospital to be filled out before you are discharged.
Children's hospitals are child centered. DD could have had her surgery at a "regular" hospital but we fought very hard for her to have her surgery at a Children's hospital because of the child centered approach to care. Take advantage of the child life specialist for your son. They are great at helping kids with preparing for surgery, the hospital stay and if you have other children include them in this process. Child life specialist work with the whole family not just the patient. It is also great for parents. While the child life specialist is playing with your child step out for a few minutes, give yourself a break. I know it's hard BUT do it anyway!
For DD her room was kept dark with no TV/Kindle/Music for the first 48 hours. DD could not tolerate the input from the sound/visual and it made her head hurt even worse. DD's NS also had an order of no food in her room for the first 48 hours. The smell of food (she could even smell crackers) made the nausea much worse, which made her throw-up ,which made her head hurt even worse. DD was unable to eat anything until day 4 post surgery due to extreme nausea and throwing up.
I wont lie it's rough after surgery, with the first 24 hours being the hardest. But there is light at the end of the tunnel. DD just graduated from High School and starts college on June 23, 2014!