Monday, July 30, 2012

Friday~Jael's Surgery Scheduled and a Brain Full of Info

Six am is too early for the kids and I. Thomas is used to it, but we're spoiled in home school. We get up around 7:00am and start school by 8:00am, and never even meet 6:00am in passing. Ok, maybe I do....but the kids? Never. The teens would have to yell across the space time continuum to meet 6:00am.

I WANTED to be awake and alert for this important appointment. I WANTED to not be rushed (smile). It was a nice dream (smile). We made it through rush hour traffic and finally made it to Jael's appointment...all eleven of us (Thomas, the kids, my mom, and I).

Again, I have to say that this hospital is amazing. It is set up perfectly for children. Machines with teddy bears, people pedaling, crayons hanging from the ceiling. HUGE fish tanks, shadow walls, space name it...are spread throughout the hospital. The kids LOVED it!

The waiting room was full of kids and families with different prosthesis needs. A massive fish tank in the middle of the room held fish that you would NOT throw back if you caught in the local lake.

They fit all eleven of us in one room, minus "The Beast Junior" (quad stroller). Four people entered, each would play an important role in the surgery process. They gave us so much information and allowed us to ask question after question.

The doctor explained the surgery again. They will amputate mid knee on both legs so that the remaining leg will grow normally. The surgery itself will last 2-3 hours and is VERY straight forward. The risks, even for such a big surgery, are minimal. We were told she will remain in recovery (most likely) 30 min. to an hour.

When the kids were able to ask questions, Anna was able to find out that they will use dissolvable stitches. Bekah's question let us know that there would be around 8-10 people in the operating room.

They shared that we will check into the hospital on a Monday and the surgery will be the next day. Release will most likely be on that Friday.

She will have fairly heavy meds in the hospital, but they said that once we are home, much of the time she will just be on normal Tylenol and such. They will give us something for just in case though.

Our little gymnast will need to be somewhat still for two weeks at home. Now THAT will be interesting for our very active little girl. It'll be hard on her watching Gabe and Rachel run and play and having to be more immobile.

Around that six week mark we re-enter the hospital for a week. They will spend an intense week of training her to use her prosthesis. This was new information for us and we o have somewhat of a choice. Living 40 min. away, we could drive back and forth daily. Yet they explained that with the intensity during the day, she will need naps and having a room would help her...soooo....a room it is! We have yet to figure out logistics, but we've got this. I should say God's got this!

That was just pieces of what the doctor shared with us.

Next the psychologist introduced herself. This is such a big surgery that every family is required to meet with the psychologist before the surgery. We will meet with her and the nurse that our family will intimately get to know.

It'll be just be Thomas Jael, and I. Jael will also be able to play with special prosthesis dolls there during the next visit as well.

Finally, we sat with the nurse after this and scheduled the surgery. She was beautifully pregnant and so kind as we talked it over. The surgery is tentatively scheduled for Tuesday, August 28th (Update: Surgery has been changed to September 4th). We have four weeks to meet with the psychologist prepare our house, freeze food for the family, and get our schedule in order.

Where a little fear was setting in, it's gone again. These doctors, nurses, hospital staff are wonderful. God has blessed us. HE knew when Thomas got out of the military that this was where we needed to be...even all the way before Jael was a thought or a hand print in our hearts....that we would need to be here.

After some extremely patient and professional individuals answering all our questions, we headed to the Family Resource Center that would connect us with other families of children with prosthesis, support organizations, and resources that would help us.

We've already ordered these books. How neat are they?!!!!

Apparently we had been doing the right things...going over pictures, touching her leg and telling her what part will "go away" and where they will make new legs for her...preparing her. These books though...we NEVER even imagined they were out there!!!

With only minor disorientation (normal for we dropped by Medical Records so they could start us on the right track when it comes to government/state things that are offered for Jael.

Lastly, we headed to the Prosthesis clinic for a tour (around the third hour there).

We really were glad we did. They answered questions that we didn't know we had.

Right after surgery they will put a compression sock on Jael. This is not really for circulation, but to shape her legs for the prosthesis.

Her particular amputation will be called Bilateral Knee Disarticulation or B-KD for short.

About six weeks (which stuns us in quickness) after surgery, she will be fitted for her prosthesis. This will most likely be an initial straight leg, no knee prosthesis for her to learn to balance on. She was FASCINATED by this (as you can see) and is starting to get excited. It's so cool to watch.

This first picture is of Jael with the initial type of prosthesis she will use (without knee) while she learns to balance. Then you will see the one with a knee and the one for running.

She will actually get to choose material/cloth for her first prosthesis to be made with. If you check out the running prosthesis, you can see the material someone else picked.  We want it to be fun for her. After that she will receive at least one with a knee. That one we will probably leave plainer so that we don't have to try to coordinate (have to think of long term).

Jael's leg may change shape as she heals and she may have to have a new prosthesis sooner than expected. After the initial adjustment it will most likely be every 12-18 months before a new one is required.

They also shared with us, another so cool surprise, that she MAY not even need Occupational Therapy after surgery! Many in her situation don't...because the prosthesis becomes such a part of them and they just take off!!!!

The day was huge, tiring, and MUCH needed. We feel much more prepared. The kids seem to have some confidence and we know what to plan for.

Now we have to keep Jael well. We have to call f she comes down with ANY illness. It may have consequences on when the surgery will take place. We are debating on how isolated to keep her...Church, no class (close contact with other littles)? Crowded places? We have a house full of kids, so whether it's worth trying to cut down on exposure or not, we're contemplating what's best.

So, of course, today my husband is sick (he is NEVER sick). Anna and Gabe seem to have it too. We call that the "Marr Factor" (lol).

This month will pass quickly. Please continue your prayers for Jael and for God's Hand to be on her, her surgeons, and please pray for quick healing.

Thank you guys! It's such a blessing to know Jael is covered in prayer.

Have a blessed night. I'm gonna curl up with my new book, "Unshaken: Rising from the Ruins of Haiti's Hotel Montana."

"Come and hear, all you who fear God; let me tell you what he has done for me." Psalm 66:16

1 comment:

  1. What a wonderful job you all are doing to prepare the family support team for Jael!! The books are wonderful. As a Floridian I would also like to recommend , A Dolphin Tale, the sweet story of Winter the dolphin and her prosthetic fluke. Your older children may enjoy screening it with you. Winter helped to encourage a veteran as he too adjusted to prosthetic support. Even though some content may be too stressful for little guys, you may enjoy ff the DVD to some of the beautiful footage as Winter swims at last!!!


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