Thursday, November 21, 2013

Minnesota Trip

Zeke, Kai and I got back late last night from our whirlwind trip to the Minneapolis Shriner's Hospital.  We went up on Monday and came back on Wednesday.  Yes, it was 8 hours (or so) one way.  Yes, my children did amazingly well, even the baby.

We stayed with our friends who also have a little girl from China with limb differences.  (And her 4 brothers and sisters.)  Zeke had a ball.  He played so hard.  I also loved that I got to catch up with my friend, Hilary, and that she was able to help with the baby during the doctors' appointments.  She actually just returned from a trip to China so she was a bit jet lagged but I love that we are the type of friends who can not feel the need to make things "perfect" in order to be comfortable with each other.

Wrestling before bed

So cute to hear her yell at Zeke "Buddy!  Buddy!"
As to the appointments:

We met with a limb difference specialist and a prosthetic specialist first.  Essentially, we just talked about if there is anything Zeke can't do that he wants to do.  (Um, not really other than the monkey bars but he's only three and that's probably going to be a challenge always.)  The prosthetic specialist showed us the variety of devices that are available which gave us a better idea of what might help Zeke.  As of right now, I don't know that there is anything that Shriner's offers that Zeke needs to use.  For Zeke, he has a wrist on his side that is missing the hand.  This means that he has the ability to bend that and grasp things with that wrist.  Adding a prosthetic to that side might give him a pincher type grasp but it would also take away any sensation that he has on that side.  So he might gain a bit more fine motor ability for grasping on that side but he would lose the sensation of gripping which is one of his strengths.  They do have an electronic hand that would definitely help with fine motor tasks on that side.  However, because of the electronics involved, it's very heavy so it is more for an older child.  The other piece of equipment they showed us was a prosthetic with assorted "attachments" for the hand.  (Think Dremel tool attachments.)  Basically the "hand" unscrews and can be interchanged with a variety of tools to be used for specific tasks like throwing a baseball or catching a basketball.  At some point, we will probably have one of those made but right now, he doesn't have enough need for something like that.

The major part of our appointment was spent consulting with doctors on the possibility of a toe to finger transplant.  I haven't had a chance to fully talk it over with D but I do feel like I got a much better understanding of what the procedure would entail.  With this specific surgery, Zeke's second toe would be removed and placed beside his pointer finger to create a third finger on his left hand.  This toe would bend and create a tripod grasp for him on that hand although the bend would not be quite as good as what a finger would normally have.  The new finger has the growth plates from the toe in it so it will grow just like any toe would normally grow.  This means the toe would never be as long as a normal finger but the doctor thought that given Zeke has a shorter pointer finger, the difference in size would not be as noticeable.  They would also somehow shift his big toe and third toe so the toes would be closer together, thus reducing the gap created by removing the second toe.   The risk factor really consists of the toe dying and not successfully attaching to the finger.  For this reason, Zeke would be sedated for about a day after the surgery to give the blood vessels a chance to do what they need to do to connect the toe to the hand.  This risk is small though as the success rate for the surgery is approximately 95 to 97 %.  The surgery would be done at Mayo in Rochester and would require a 4-5 day stay.  When Zeke was ready to come home, he would have a cast on his hand and his foot for about a month.  We would then do another trip to Minnesota to remove the casts.  In terms of follow up care (physical therapy, the ability to walk and balance on the foot, etc.) there is essentially none.  The doctor just performed this surgery on another little boy and was hoping that his family would be willing to share their experience with us so I'm really hoping we will hear from this family soon.

So that's the the hard part-deciding what to do.

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