Friday, June 6, 2014

Surgery A' Comin'

Things are about to get really busy in preparation for surgery so this will be my last update before the big day. Henry and I head to Shriner's on Monday, with Randy to join us later that day and getting the brothers settled after school. Check-in time is Tuesday morning at 5:30 a.m. following Henry's bath with a special soap. We had a very good pre-op visit at Shriner's on Wednesday with one of the surgeons, a nurse, anesthesiologist, and physical therapist. I got some questions answered and they got the information they needed to provide the best care for Henry. More details to follow.

But first, we had a good six-month post adoption visit with our home study social worker on Tuesday. We were encouraged to hear that it being only six months, Henry is doing amazing in so many ways and receiving what he needs to thrive. Even with our challenging times and days, we are well on the road to being an attached family. We have adjustments to make to further his sense of stability and security, as well as, to address some of his behaviors. I have been reading "The Connected Child" by Purvis, Cross, & Sunshine, as well as, "The Spiritual Art of Raising Children with Disabilities" by Kathleen Bolduc. These are proving to be just what we need to help both him and us through the challenges of the adoption and special needs journeys. God is good!

Yesterday was really special as I got to attend Henry's last day of preschool with him and see him perform in their program. He sure loves to sing and participated so well in everything. We are so thankful for the love and care he has received in the classroom. Henry will be going to the 4-5 year old preschool class for four days a week next year.

 The highlight of our trip to Shriner's on Wednesday was Henry's first test drive on a motorized scooter. He was so excited and already asking how fast it would go. He did really well maneuvering the joystick, with only a few crashes:). I wasn't sure what the scooter would look like, but it is not small at all as you can see by the photos. The current plan is to borrow one to begin school with in the fall, after Henry's halo and vest are removed and he has practiced a bit more. At that time, a customized scooter will be ordered for him and take time to come in, but eventually he will have his very own. The goals are to encourage Henry's independence, increase mobility, move him from looking like a toddler in a stroller to a five-year old with much more capability, and ultimately, to increase his confidence and opportunities. He will still be encouraged to walk and move his body as much as he is able, but this will be a great asset to his life, especially when out and about. There are a number of other details to work out, however, especially in transporting the scooter. We will have to obtain a foldable ramp and secure it for the van. This is a few months away so right now, we are focused on getting through our family's first big surgery!

Some of the things we know about the surgery are that while everything will occur at Shriner's, there is the possibility that he will spend at least one night following surgery at Doernbecher Children's Hospital's ICU for close monitoring of his neurological responses. He will most likely be released to come home Friday or Saturday. Randy will be with us for a couple days, then return to the boys and work. I will be on my own after that, so I especially ask your prayers for my stamina. I will have my own bed in Henry's room but probably have a lot of sleep interruptions as people come in and out to care for Henry. No doubt we will be exhausted when we return home, but until then, we will make the best of it and God will see us through. I just have no idea what it looks like!

Other than that, what I know is that Henry will have bone extracted from his lower back to be used in the fusion at his neck. They are not fusing to the skull but this is still a high-risk procedure. It could take or not take, he could lose a significant amount of blood and need transfusion, he could have intubation difficulties or negative reactions to medications, and/or there could be damage to pressure points. I don't understand it all but I do have total trust in the Lord and confidence in this surgery team. They do know what they are doing and have experience with his condition and the surgeries it requires. 

At some point, Randy and I will receive training on how to care for Henry in his halo and vest upon returning home. It might sound silly, but one of the things I think about is how his beautiful, smooth baby skin is now going to have incisions and then scars. The halo pinpoints at the skull will need special care each day, and Henry will not be able to have a full bath or shower while wearing these things. I am also concerned about the heat of the summer and how hot our house gets. Anyway, one day at a time so we'll cross these bridges when we get there.

I guess I should wind this up with specific prayer requests. We can't thank you enough for remembering us in prayer and encouragement. 
  • Surgery on June 10th @ Shriner's in Portland
  • Peace and trust throughout the process, especially for Henry as he becomes more anxious
  • Our stamina, health, and rest during the hospital stay
  • Our other two sons during the week
  • Clear directions and memory of post-surgery care
  • Adjustments upon returning home
  • Our wisdom as to summer activities and that we would still have a nice summer break
  • Quick healing for Henry and that the fusion would "take"
  • Details to come together for a motorized scooter for Henry
  • Some sense of normalcy for all of us in all these changes!
We are so blessed with this little guy and willing to go through whatever is needed to love and care for him. The Lord has gone way beyond what we each deserve to care for us, allowing His own Son to suffer and die in our place, so it is our privilege to keep discovering and growing in this great love as we care for our son, no matter what the cost. I know that I always feel that I receive more than I give, and we can truly never outgive God! Praise God from Whom all blessings flow. God's love and blessings to each of you!

1 comment:

  1. I am praying. The specific list is good. May your church family help sustain your family too as walk this journey. The sacrifice you are making in order to attain something greater, with God's help will be all worth it.