Unfortunately, things didn't go as we hoped. The good thing is that he did ok with the anesthesia and they were able to do a muscle lengthening/tendon release in his groin muscles which will help with diapering and seating and maybe even supported sitting one day.
The not so good part is that they determined that his hips are so far degenerated that they are unable to be relocated, even with the intense process that they had planned to do with breaking the femur and restructuring the hip joint.
It absolutely breaks my heart that the surgeon said to us "it's just a matter of getting to him too late. Had we done this when he was 3 there would be no issue recreating the joint."
For Wesley's future this means that he will never walk and due to how far out there hips are and how far up they are from the sockets, he likely will not bear weight , especially as he gets bigger.
Despite the fact that the loss of activities means a lot for his lifestyle and, I won't pretend it doesn't matter... Ours too... The kicker which has me is that as he grows he will experience pain from the hips based on the way they are right now. The doctor's solution is that we "treat the pain as it comes".
I am immensely sad for Wesley and my prayer is that we will be able to learn his cues for pain and he be able to better communicate with us so that the pain doesn't go untreated...
As for right now, Wesley is in a half spica body cast down to his knees and up to his chest. He has to be transported laying down in our vehicle which not only will he hate, but it means we are a two car family and will have to lean on the support of others to get our kids to and from school since we can't put all our kids into one car for the next 3-4 weeks.
And even more immediately, he had blood in his urine all night but it appears to be clearing up. No idea why that was... He is still on major pain meds and if he is awake he is crying and his heart rate is going over 180 pretty much every time anyone walks in the room or touches him. He is also still on 1.5 liters of oxygen... So coming home today (original plan when they did only the soft tissue surgery and not hip reconstruction) doesn't look like it's a possibility.... Been a long 24 hours and we really appreciate your prayers!
:'(
ReplyDeleteDoes he have a catheter in by any chance? Ethan had blood in his urine after his tethered cord surgery from cath trauma.
Ugh sorry to hear this Mer. Continuing to pray for Wesley's recovery!
ReplyDeleteYes kristin, and thats the only thing we can come up with though it was clear for several hours after surgery...so not sure...
ReplyDeleteSo sorry for Wesley and for you all. I know it's a hard blow to be dealt, but you will all walk this journey with him and he will grow to be an amazing young man. Prayers coming to over the next few days from our hospital room to yours.
ReplyDeleteOh, I am so sorry to hear this for Wesley! Are hip replacements not an option for him? Will pray for his recovery.
ReplyDeletepoor sweet boy. he is in our prayers.. and your whole family!
ReplyDeleteOh Meredith, starting out your blog saying it didn't go as expected dropped my heart rate!!! I am sorry about the situation, but I know that you and Mike will be the best parents this boy could have ever wished for. You will adjust, you will provide, you will continue doing what your already doing. Loving these kiddos with all you have. Hoping his sats come up so you can take him home. Your in my thoughts and prayers.. Long distance (((HUGS))) from PA :)
ReplyDeleteThis makes me so sad. :-( Poor little guy. Thinking of you all...
ReplyDeleteMeredith and family-
ReplyDeleteI know that news is far from the best. Please remember that medicine and the science world make amazing discoveries EVERY day.
I have followed your blog and adoptions for (at seems like!) forever! I remember how a couple years ago, your hearts were heavy with the fact that Emma might not be able to handle heart surgery... now she is standing and growing. Your family is in my heart and prayers. You have given Wesley something that so many will never have - a family, as well as being loved unconditionally.
Sending you all hugs and positive vibes to help little Wesley.
Oh, Meredith. Please know we're praying for all of you.
ReplyDeleteMay God be with you and your family in these trying times Meredith. Our prayers is with you guys always.
ReplyDeletenever give up on wes hugs to him and to your wonderful family
ReplyDeleteToo late. So wrong. That breaks my heart so I can't even imagine how heartbroken you must be. Praying for peace for you and medical breakthroughs for your sweet son.
ReplyDeleteI am so so sorry!! That has to be so hard as a parent! poor little man :(
ReplyDeleteJust because doctors say something is so, doesn't always mean that it is so!! I have seen that a LOT in my career - doctors are wrong all of the time. My daughter has BADLY BADLY dislocated hips - the balls of her hips are WAY up over the acetabulum - and she bears weight just fine. She doesn't walk well, but she walks, and I suppose her body has adapted and designed "false hips" for her. I don't expect she'll walk/bear weight for very long though, as she gets heavier and closer to adulthood (she's 10) she'll probably use her wheelchair more and more, but don't think that Wesley will never bear weight simply because his hips are badly out of place.
ReplyDeleteJust thought I'd give you that bit of encouragement.