So I should be asking everyone for prayers for tomorrow for Avery’s surgery BUT….it might not happen..instead I am asking prayers for knowledge and wisdom to make the right decision…I wish I could see in a crystal ball and see the future to see how this would affect her bc really that would be soooo much easier..but just to let you all know what is happening..ill try to explain everything good..but just to warn you my head is really spinning with everything so it might be a little confusing..bear with me!!! I am hoping this will help me see it too..by writing it out..so hear we go…….
I get a call from the nurse that the dr wants to see me before the surgery..so i go in there Tuesday morning bright and early..Well apparently he was un easy about everything since the last time he seen me. So he consulted with lots of other drs..and did lots of research and reading up on Avery's problem..you see Avery is very different..He has never seen this before or did this operation on a child with DS.He has seen it many times on children that don’t have DS but usually they put there hip out and it stays out but that is not the case with Avery...what Avery has is very rare with kids with DS..If Avery didn't have DS she wouldn't have this problem..She basically can slide her hip in and out many times..over and over..and over the last year it has become way worse but she has had this since she was a baby. So she puts her hip out many times through out the day and then she pops it back in..it is really gross to hear too.. The more times she does it the worse it gets bc she keeps stretching her ligaments out. And with her having DS that is what makes it so easy for her bc they tend to have looser joints. .so with that being said..half of the drs told him not to operate..the other half said do it..They got an xray of her hip out and it was out way more then what they thought..he had said that she has probably stretched it out to the max….
So this is where I am at…If we don’t do nothing at all…kind of like don't fix something that isn't broken thinking..right now its not broken and it isn't causing her pain..BUT eventually it will probably cause her pain and she will get arthritis in the joint...and it will start wearing down her bone the more she pops it in and out......BUT just maybe the ligaments COULD grow tighter over time too and she could have no problems with it and it could possibly fix itself..
If we do this operation. An open reduction surgery where they are going to go in there and tighten up her hip ligaments and build up her muscles around her hip...there is a chance that it will cause her pain.. or that it wont take and she will go right back to her old ways and we are back to square one... or that it will %100 work and cause her no pain and fix it..and then you have to ponder the complications that can occur from the surgery like the whole bleeding problem..where they cant get it to stop..which scares me to DEATH..especially since he has not did this particular operation on a child with DS before….and they also could kill her hip also while doing the surgery small chance but still a chance….
He thought maybe we could do a MRI to see the bone behind her hips that arent showing up on the xray to see if he could do bone repairment during the surgery that would make it take more..and we wanted it done before surgery to help us to decide if we should cancel it or go ahead with it..but just found out that they cant sedate her for the MRI bc she has severe sleep apnea..so they are going to attempt to do it while she is awake but I don’t know how that is going to work bc she has to lay very STILL and not move at all…but they do have a movie she can watch so maybe that will help..but if it doesn’t work then we will have to schedule an MRI with the anesethologist..so they can put her to sleep completely with a breathing tube down her throat..so that is today..so say some prayers that everything will be fine..
Well here comes the tricky part..So that left me to come home and do lots of research myself...so I went searching for other parents that were in my same similar situation..I went to a DS message board that I have been on since I had Avery and i found this mom who has a girl that has DS and was ten at the time I think that had a different surgery done at after she fell and hurt her hip and it caused her alot of pain.but she had this same thing but when they went to the drs they told her just to leave it alone until it got worse...anyways i found her on FB and messaged her and asked her if I could call her and talk to her…and she emailed me back with her phone number so then I called her yesterday to talk to her..there is a dr in Boston that specializes in a different surgery…The surgery is a triple pelvic osteotomy- what that means is that they make three cuts in the hip socket and then reposition it so that her hip will not dislocate. They stick a few pins in it and the bone grows around it..and then one year later take the pins out..and there have been 5 kids that have ds do this surgery that she knew of.....with this dr..so she gave me the names of a few other ones who I contacted and exchanged a few emails with one was 4.5 when he did the first surgery..and the other boy was 7 when he did it..they both agreed that this Dr. was awesome at what he does..and I should def get his opinion..so I got there number and made a call up there.. So I started the new patient procedure up there…basically I just gave them all of Avery’s info and then when she gets done with the MRI today..I will have them send up the drs notes and images to them and they review them..they do all the reviews on Wednesday’s..so then on Thursday they will get back to me with what he recommends..This dr up there basically created this surgery..it is at the Children's Boston hip center..and most of them did not regret doing the surgery…it is a lot more complicated then what we were going to do..he will only operate on one hip at a time..and it is a 5-7 day stay in the hospital..hmmmm….who do I know in Boston???? ummm no one!!!! lol!!
Well then I called my dr here and asked my dr about this triple pelvic osteotomy. He had heard of it and no one in this area does it on kids. He had heard of the drs. up in Boston too and said that he would gladly put in a referral up there too..But he thought it was done more on older kids and he felt that it wasn't the right thing for Avery...soo now what??? Are you still with me??? are you confused yet??? LOL!! Don’t blame u bc whew..I am!!! Will keep you all updated with the surgery…if its tomorrow or not..Wish us luck at the MRI at one today!!
She was very cranky too.and she even knew that..bc she told me its probably a good thing I don’t have to go to school this week bc im a little crabby..ha! So after resting a lot and keeping the leg elevated she is pretty much walking all round today and last night with out any problems or pain.. I have heard “Im bored” so many times in the last few days too..The trick is going to keep her from doing stressful things to her knee over the next six weeks..like going for bike rides with Grandpa..and jumping on tramp or just running around..Here are some pictures from her surgery…
