Okay so all of this will sound like I'm overthinking things in advance but I am much more relaxed with a plan in place so bare with me....
Hoping some of you can shed light on any logistic difficulties I should consider "IF" we were to schedule decompression surgery with a NS across the country for my 5 year old son. Will flying or an extended train ride be painful or restricted upon discharge from the hospital? Is it recommended that we stay put in a local hotel X number of weeks until after the first post-op visit?
Also a couple of general logistic questions for the hospital stay (regardless of location). Will myself or an adult family member be required to stay right at the bedside of my 5 yr old literally 24/7 once he is out of surgery and ICU due to his young age? Does one parent "typically" sleep in the room with the child or are parents encouraged to or voluntarily sleep elsewhere?
I'm a single Mom so I'm already working through how I'll make sure that my 5 yr old is attended to by me in the hospital, as well as what to do with my 9 yr old son that entire week. I will have limited family support at the hospital and babysitting at home for my older son on the day/night of surgery but Day 2 and thereafter, it will be 100% me solo at the hospital with my 5 yr old. I will need my Mom who is my ONLY support person available to watch my 9 yo at home so I have no backup relief at the hospital the rest of the stay (even if it turned into a month long stint with complications). Is this even doable without a backup person? And no, there really is NO other relatives, neighbors or family that we can call here that is physicially up to babysitting at home or visiting the hospital for a few hours other than my Mom. Way down on the radar but I don't even want to think about who will take care of our two LARGE crazy dogs or the cost to board them during all of this, or how to keep them away from the 5 yo when he comes home to recouperate.
Hi..depending on which Dr u go to they will have their own info to share with u in regards to what they suggest..and it all depends on how surgery and post op recovery is going....and how far u r from the hospital and or Drs ...so they may want u to stick around....I went out of state, but it was not that far a drive 3 hrs...so I came home by car, I took my pain meds just b4 we left and had a nice fluffy pillow to help cushion my head from bumps....
I actually enjoyed most of the drive as I was in the hospital for 5 days....
Also u will want to get a support system in place at home...a NL or PCP that knows about chiari and a go to Dr if nething should happen once u r home.
Many of the hospitals...offer lodging close to the hospital...lower in cost then a hotel, and the hospital security will pick up and take u back to the lodging after each visit.,..some hospitals will allow a parent to sleep in a recliner in the room...so these are all things to ask as u schedule.
I know I am not a child, but it was just my DH, and he had to leave to go to work....
So ur mom will not be at ur home with ur 9 yr old? that would help, that way the dogs can stay home too....but, it is down the road as u said, but worth considering.....so much to consider....I know there are other Chiarians in NJ, u may be able to get some help from a local support group.
Did you consult with CHOP? It is where my daughter (15) had her surgery. Just thinking it would be closer to you and the NS division is ranked 2nd in the country behind Boston Children's. Not that such an important decision should be based on location.
I live in michigan. We drove to colorado for my surgery. Stayed in hospital for 3 days then in hotel one night before making long journey home. If u drive take lots of pillows. It was a 2 day drive. About 22 hours in car. But flying hurts my head. I didn't have much support. Just fiance at time, but he worked from 6am til 4:30 so it was just me. I wil be praying for your dear son. Hugs, Dana
It's been a very long time since my son at 7 had surgery, but I was allowed to stay in the same room. He was never in ICU.
Wherever you decide to go, I'm sure that the hospital will tell you what they allow & require. Best case scenario, it will only be a few days.
Having recently had surgery, I would prefer to travel whichever is quickest to get home! I agree w/the pillows, & also have a cervical collar to help w/the vibrations of traveling.
I was concerned about my hyper border collie, looked into boarding her, but the trainer advised me to give her a chance to behave--& she did! (however, she has been really BAD, worse ever, since my DH has been home w/a broken leg!!). Maybe a rescue group can help w/the dogs? It may actually be more beneficial for your son to have dogs at home, back to normal.
Btw, my DD works at CHOP. That would probably be my first choice anyway.
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