Sunday, October 5, 2014

Unexpected gifts

The last two weeks have been a whirlwind. McCall was very sick for almost two weeks with some kind of crazy strep/stomach bug. So while I was trying to prepare for Suubi's surgery I was also trying to figure out what the heck was wrong with McCall. On one hand it kept me from obsessing and worrying about the surgery but it also wore all of us flat out!

Jesus is so good though the way He brings friends alongside us to keep us walking. They helped me prepare, encouraged and checked in on us. Set up a meal train for the time when we get home and planned to stock our pantry.  Everyone has been so kind and supportive.

So now McCall should return to school Monday and get started on homebound hours after school also to help him catch up on the 10 days he missed. During the past two weeks I also set up the paper trail to get Suubi on homebound status when she comes home. She may be home anywhere from 6-12 weeks. I also fought with discussed in depth some options for her in-home care with the local agency that matches us with an aid. We hopefully will continue to use the same aid we have been using for the majority of the hours. Thankfully we are on the medically complex child waiver through the state that allows us to have a trained aid come in for a certain number of hours per week to help with Suubi's care. After surgery those hours should be increased to allow someone to come while I work in the mornings and possibly for someone to come in the evenings when Mark and/or I may need to take the boys to practices,etc. We are so thankful for this help! It allows us to still function fairly close to normal, which we feel is important for the boys, especially.

I also found out that we should be eligible to be part of a program through the health department that would help us obtain high calorie pediasure that Suubi currently drinks and may need to be more dependent on for a time post surgery. So each of these tasks actually requires multiple phone calls, face-to-face meetings, emails and prayers:) Throw in an extra IEP meeting and a couple of events at school and the preschool where I work....well we have been on the crazy train!

So I can hardly believe we are actually here! We will get Suubi up tomorrow at 5 am, give her some meds and wash her in a special antibacterial solution. We have to be downstairs ready for check-in at 6 am. We are staying in one of the family rooms at the Shriners hospital. They are so welcoming and we are so thankful to be here.  The surgery should start at 8 am and last around 4 hours.

At pre-op last Friday the doctors and nurses just kept reiterating, "this is a big surgery" and "don't expect her to return to baseline for 6-9 months". I kinda knew this, but hearing it from the surgeon made it real and a bit sobering. They are doing a bilateral VDRO and left dega. (I hope I got that right.) Basically they are taking a piece of bone like a wedge out of both of her legs near the ball of the top part of the leg. The will then put plates and screws in and position the ball part back into the hip socket at the correct angle. On the left side they will take the wedge of bone that they removed and place it into a cut they will make in the lip of the socket. They will bend the socket to make it form correctly the pocket. Very poor description but that is how I understand it:)

Pretty amazing actually! They will do the left side first and if she loses too much blood then they will close her back up and we will need to come back 6-8 weeks later to do the right side. They want to avoid a blood transfusion. So if you would pray with me that they can safely do both sides tomorrow?  She will be under general anesthesia as well as have an epidural.  Of course there are all kinds of fun risks with that too but we want her to be as comfortable as possibly, particularly since she is nonverbal and won't understand what is happening.

During surgery, Dr. Gibson will decide if he wants to put Suubi in a spica cast or if he wants to do knee immobilizers and a wedge between her legs. So, we will see! We will be at Shriners until Thursday, at least that is the plan! We know we are in very good hands here and are truly thankful to be surrounded by so many doctors and nurses that are so capable.

Am I scared? Heck, yeah! But we do things scared:) It kinda feels like when you are driving during the summer and all of a sudden you see ahead of you one of those huge dark rainstorms. And you know you have to drive through it. You know somewhere ahead on the other side the sun is out and it is only temporary..but golly...when you are driving through it you white knuckle the steering wheel and pray out loud and go really slowly, keeping your eyes on the road ahead of you!

He is with us and He has made that abundantly clear. He walked with Suubi way before I came on the scene:) This is important for Suubi's quality of life. Yes it may help her bear weight and eventually be able to walk. We hope and pray that happens, but if not, it will also help her avoid or at least prolong arthritis in her hips and her hips becoming dislocated, both very painful things to deal with.

There are lots of things I wish could be different for my girl. One of my favorite things in the world is to read. I read to Suubi, but last week we had a book fair at the preschool and every day it sunk in more that no matter how excited I was about some of those beautiful books with beautiful pictures...Suubi couldn't enjoy them the way I did. It did make me sad for a few days. But there are other things that Suubi finds amazing and beautiful that I can learn to appreciate and enjoy with her....the thrill of being upside down, hearing the people she loves sing to her, listening to her brothers laugh, the excitement of when a crowd cheers, the birds in our neighborhood, hearing a ball bounce on our hardwood floors. I get the gift of seeing and experiencing the world through a whole new lens as Suubi's momma. That is an amazing gift!

God could have chosen anyone to be her adoptive momma, but He let me be the one. I get to try to comfort her when she doesn't understand what is going on tomorrow. I get to sing to her and attempt to make her comfortable. I get the privilege of advocating for her and explaining to the nurses when I think she is cold or in pain or hungry. I get to be the one she leans her head toward and makes a kissing sound to when she feels content. I get to watch her daddy get wrapped more tightly around her little finger with each smile. This crazy ride isn't what I expected....but it is beyond my wildest dreams:) Jesus is indeed taking me into deeper waters and calling me out to the unknown. The waves are scary, but I'm also very aware of how blessed I am to even be in these waters and I want to faithfully keep my eyes on the One who will keep me afloat! So here we go friends! Pray with us please!