Saturday, August 25, 2012

Jael's Surgery Overview

 

Since Jael's surgery date is coming quickly, I've decided to condense much of the information we've been given into one post.  This way I can refer my family and friends here to a single post.  If you've read our previous posts, this is just a way to combine all the information into one and will be information you already have.

A little history...

Jael came home to our family in January of this year.  She has a congenital leg deformity called tibial hemimelia .  She is missing a bone in her lower leg and her knees and feet are not formed correctly.  They are so beautiful to us though.

This is something we were very aware of and of the knowledge that (most likely) the best option for her would be amputation of both legs at the knee. 

Jael is a healthy strong little girl that has blessed our family and we will miss her little feet painfully.  The amazing thing is that she will be able to walk, run, play sports, or (as the doctors say) be able to do most of what she puts her mind too with prosthesis. 

We have shown her pictures explaining.

We have read books.




She has had a chance to play with a doll that also has a bilateral amputation.



She has also been able to handle real prosthesis.



She now talks of being taller than her brother, out running her mommy (not hard to do), beating her siblings at races (she loves running), and just plain walking.  Oscar Pistorius was amazing for her to watch at the Olympics this year.  She LOVES the running legs and tells me, "Mommy, I want those!".



Thankfully, Jael was accepted by a leading hospital for surgery.

On Friday, August 31st, Jael and I have her pre-op appointment.  They will run necessary tests, assign a room, take care of paperwork, etc..  Since it's a holiday weekend, we will not check in until Monday night.

Her surgery is actually Tuesday, September 4th at 9:30.  At this point she is the youngest patient that day and will go first.  They are kind to schedule her early, as she cannot eat or drink from the night before and after surgery they will only SLOWLY let her have fluids.  They say she will probably be able to eat that night.

Here is how things will go...

Monday night we will all go to check Jael in and I will be staying with her that night in an already assigned room (similar to below).  They assign single rooms first, so if there is one available, that's where we'll be!


Jael's floor at the hospital.

Thomas will be coming down early on Tuesday. 

Before surgery (about an hour) they will place Jael in what was termed a "heated body sock".  They will then give her happy/loopy medicine. 

Thomas and I will go with her to the holding room (pictured below) in waiting for the surgery to take place.



The surgery itself is very straight forward.  We have been informed that it is the least painful for an amputation surgery.  They are going through mid knee and do not have to cut through the muscle and tendon in the same manor.  The surgery is expected to take 2-3 hours.  They MAY call us mid surgery, but if the surgery is quick, they may not.  We have been told infection is the biggest risk of surgery, but that it's a rare occurrence.

While we wait, we can either wait in her room or the waiting room (pictured below).  The waiting room is what we're expecting as the room is relatively small.  We're given a Chili's like beeper that lights up when they are ready to talk to us.



When the surgery is over, Jael goes to recovery.  We will be able to be there when she wakes up.  She will then be attached to numerous tubes and such.  The tubes only stay in 24 hours.  She will also have a pressure sock over the amputation to help circulation AND shape her leg for the prosthesis. 

We will be bringing a wagon we've padded and once the tubes are out, she won't have to stay in the same place.  We plan on leaving her side exactly NEVER (smile).

They will send us home from the hospital with a small wheelchair and explained she will need to own one for the rest of her life. They said their will be times as she grows that her prosthesis will need to be refitted AND their will be times where her prosthesis is rubbing her wrong and she will need to heal.

They've shared with us that we will (most likely) struggle more emotionally than she will.  At least that is what their experience says.  At her age she won't even have phantom pain since that area of her brain is not developed yet.  We will remain in the hospital for about five days. Homecoming will either be Thursday night or Friday.  The prescription pain medicine we are given will be minimal.  They said that at night to go ahead and give it to her, but that we will be AMAZED at how she bounces back and wants to start playing.  The trick is trying to get not to open her dissolvable stitches by being too active too quickly.

Thankfully we have SOME plans for that as well. 

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Side Note (the plan to keep Jael busy):  We have been blessed to be accepted to a new teaching co-op, where volunteering is how you pay tuition (basically) for five classes (per child) one day a week.  They are working with us since we obviously can't exactly volunteer.  Their hearts are amazing. Our friend Amber is watching the five oldest as her girls are attending as well.  School starts the Monday after Jael is released from the hospital.

With "away from home" school starting so quickly, the plan is to start a basic preschool quickly as well.  If the doctors are right, Jael will be feeling pretty good already.  Also, someone VERY kind, gave me a three month early birthday present....a Nook.  There are all kinds of free and VERY inexpensive learning games (as well as cute "read to me" books) that Jael can play when she's limited in movement.

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Jael will need to take it "easier" for two weeks and we then return to the doctor for a check.  At six weeks  she will (most likely) be fitted for a prosthesis.  There may be several refittings of the prosthesis since her leg shape may change as she heals. 

She will initially have a leg with no knee as she learns balance, then will go to one with a knee. 

When the time comes for her to stand for the first time, we will check back into the hospital for a week of intensive therapy.  We can return home at night, but will "officially" be checked into a room.

Apparently, in a child this young, they often don't even need Occupational Therapy...wow, just wow.  It becomes like a second nature.

All this is so new to us and everytime we come back from the hospital, our heads are full of new information and we tend to be exhausted.  We are almost to surgery and of course, we have mixed feelings.  We have 100% confidence that this is the RIGHT thing though.

F.Y.I. We will be updating the blog during and after the surgery...somehow (smile).  That is our plan anyway.

Thank you friends for praying...please cover our daughter, the doctors and those tending to her, and our family. 

Thank you to those who have asked about meals. What we are requesting (due to having to keep our little one fairly still following surgery) is meals that can be thrown in the freezer before surgery or food/groceries that can keep. This way we can keep Jael’s surroundings calm and pull out food as needed. It was just suggested to me that gift cards for meals would also probably work well in our situation. 

Hugs and MUCH appreciation for the prayers, love, and compassion you've shown us as we walk (and are often carried by God) down this path. 

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3 comments:

  1. Hi ~ I'm always surprised and delighted when the Lord leads me to new blogs! Especially a blog that I connect with. And, I certainly feel a connection with your precious Jael. I had a below the knee amputation in Oct. 2007. While it's a huge surgery, I actually did well. I had an epidural, which was accidentally pulled out when they moved me onto a stretcher after surgery. Yikes! They kept insisting that I could not feel ANY pain with an epidural and I kept screaming! After a few hours, an Anesthesiologist came up and discovered that it was not in my spine. Finally, they gave me some very strong IV narcotics and put another one in. The recovery is more difficult for an adult and I've read that children really do recover pretty quickly.
    The one thing I would encourage, both as a patient and a former Pediatric RN, is that you really advocate for good pain control for Jael. Children just do not get the same level of pain control as adults do. There's kind of a mentality that children "will forget/won't remember" the pain, so they often don't receive adequate pain control. But, Mama's and Daddy's KNOW their child and if you have that gut instinct that she is suffering, demand pain meds. Talk to her Docs in pre-op and tell them you want them to write orders for the meds, so they will already be available if Jael needs them. That saves everyone involved from a whole lot of physical and emotional pain, when a nurse doesn't have to try and get an order from a surgeon who's likely back in the OR with another patient! : )
    I hope I don't sound "bossy". I just want the big day to be less stressful.

    On another note, I will also be praying for Jael and for your hearts as her surgery day approaches. For a Peace that will surprise you. For Strength, as you see her off to surgery and as you wait for the surgery to be completed. And, for Princess Jael... that she will have no big pain issues or fears. That everyone who is in contact with her during surgery and her hospital stay, will be patient and kind and loving as they minister to her body and soul.

    I will be following your blog and keeping up with this new journey in Jael's life. I have a feeling that she is going to be up and running, much sooner than anyone expects. She is darling!
    Love in Him ~ Jo

    ReplyDelete
  2. Hello! I fellow adoptive mom forwarded me your blog, and I'm so glad she did. First of all, Jael is precious!! And, when I saw those sweet little feet, it reminded me of the little one that my son used to have before his amputation. We adopted Dylan from Henan, China in Nov 2010. He was born missing the lower bones in his left leg, his right leg was unaffected. He didn't have a working knee, and they also did the amputation through it (without the need to go through bone). He also had a small foot, fully formed with a tiny heel and two toes. For some reason, I was just sad to see that go, and kissed it when he went back for surgery :)
    Dylan had his surgery at Shriners, and we've been very pleased with his experiences there. He did very well with surgery, dealt well with his body cast for about 4 weeks, and is now on his second prosthesis. The first had no knee, and this current one has a working knee (though, he's much faster if he keeps it straight, which we've been told is fine...his future legs will be easier to bend).
    Anyway, I just wanted to reach out and offer my support, prayers, and I'd be happy to answer any questions you might have. Dylan is an amazing blessing to us.
    Blessings,
    Donna

    ReplyDelete
  3. Oops, forgot to include our blog in case you wanted to check us out :)
    Donna
    www.handsful.com

    ReplyDelete

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