Advertisements
We have several children, but only two left at home. Our 14 year old who has Down syndrome, and our 10 year old we just adopted internationally. He also has DS.
We've been through countless surgeries with my daughter, so surgical issues are not new to us. But with A, who has only been home for 2 months, we found out three weeks ago he needs major surgery: Spinal fusion of his neck. He'll be in a halo for 6 months after the surgery.
I am trying to figure out the best way to handle this. I would estimate he understands about 40% of what we say. He had no method of communication when we got him, but he now has around 250-300 signs. He's writing his name, counting, just basically taking off in all areas.
I'm really worried about our bonding. The surgery will be taking place several states away because that's where the guru guy is. DH and our daughter will join us for approximately the first week until A. is out of ICU, then they'll return home. A and I will stay for somewhere around 2 weeks.
For those who have gone before me, and had to deal with major surgeries right after adoption, do you have any suggestions how to deal with this?
I'm also concerned for my daughter, (also an A. LOL) who has been basically an only child for 7 years. I was gone for 3 weeks and she did fine because I was bringing her new brother home, and she was excited. It was like I was bringing her a gift (which I was! LOL) But last week when we were out of state meeting the surgeon she had a little more trouble, and we were only gone for 2 1/2 days. This time will be longer, but MUCH more intense with the surgical stuff.
I'd love some input from those btdt parents.
Like
Share
We've not had to deal with *major* surgeries, but surgeries soon after placement. I know with older kids, it seems literature shows the bonding can be sped up with a child who's literally 'at your mercy' in a strange environment and has to lean---specifically---on the parent. THAT part of this might not be a bad thing, KWIM?
But, in terms of how well your dd will deal with this.....could you skype or at least phone her every night to help with any insecurities she might have? (I'm NOT a computer-savvy person and wouldn't have the first idea how to set up a skype camera, etc......but I suspect it's not too difficult to do...)
Could you be able to stay at a Ronald McDonald house nearby so she could stay with you...or might this be too difficult to deal with, given that your attention will need to be with your son?
Just some suggestions I was thinking of. These types of situations aren't easy no matter how you look at it.
Most Sincerely,
Linny
Advertisements
Thanks for your response. Yes, we can use Skype, which we always do when I'm out of the country (provided I'm staying somewhere there is internet! Sometimes it's hard to find in Eastern European areas.) We can stay at Ronald McDonald house if there is space. You cannot find out of there is space until the morning of your arrival, as they don't reserve rooms. But, I don't plan on leaving him alone in the hospital AT ALL. He is just too fearful and it is too soon after the adoption to have him freaking out about being left. At least when he's in ICU my husband will also be there so we can take turns being at the hospital because my daughter isn't old enough to be allowed into the ICU.
This will be a rough surgery, requiring him to be in a halo for the 6 months following. NOT FUN. I'm dreading it.
Is there any way the surgery can wait even a few months? Or they could do something more minor that would hold you a few months? I understand that it needs to be done but I think it would make a huge difference if you could hold off just a bit. This is a kid who has natural communication barriers, plus language barriers, plus attachment issues, plus cultural issues, likely institutional issues (fear of being in a hospital like setting)and limited ability to comprehend and then you have a kid on the other end with limited ability to understand. I think it is just too much. Perhaps if you explain that to the doctors they can make a better decision. I get that his condition requires immediate surgery as the standard solution to his problem but that might not be the best solution for him.
All that said, I totally feel for you. I don't have any great advice for handling the surgery other than to let you know, when DD was inthe hospital ofr 6 weeks we found that the job actually required 3 adults to care to the 2 kids because we could not take DS to the hospital at all. THis meant that we needed a third person to watch DS even for a quick parent switch but also because there were times when we both really needed to be at the hospital.
Thank you for your input.
Actually, no the surgery should have been done this past week! Right now his C1 vertebrae is directly on his spinal cord.
With the spinal cord you have the dura, then cerebrospinal fluid (CSF) which is a cushion for the cord, then the actual cord. The C1 vertebrae has punctured the dura, is blocking the CSF fluid to the brain (your brain needs that!) and is rubbing directly on the cord. At this point, he could cough wrong and either become a quadriplegic or die. It is that serious. The fact he survived his life in Serbia is a bit of a miracle.
The only reason the surgery wasn't done last week is because he has a mouth full of rotted and abscessed teeth. He needs oral surgery to get rid of any infection in his body before they can be messing with his spinal cord. He's having the oral surgery on the 7th, then the spinal surgery needed to be at least 4 weeks after the oral surgery, but our surgeon is gone the entire month of April, which puts us to may.
..................Insert big long exasperated sigh here................
We do have relatives and friends where the surgery is being done who will be able to provide some support while we're there, particularly with caring for our daughter. But maybe will set it up as more definite and not "on call" like we'd discussed. She completely understands the whole hospital thing. Having had 20+ surgeries herself, and lived in the hospital her entire 2nd grade year, she "gets it". In fact, when she grows up she wants to "work in the surgery waiting room to help kids not be afraid before surgery." because she knows how to do this! LOL And, she is a waiting room pro in general!
I'm putting together a social story about the upcoming surgery so we can go over it a bunch of times before surgery. Hopefully that will help some. Yesterday he had to have some tests done which included an IV and other than the fact I got kicked a few times, he did really well. I did learn that his feet are his weapons when he's mad, and boy do they have some reach!