Thursday, June 30, 2016

Week #1 Halo Update

The halo is placed and the skin flap is done and so far Trinity is doing pretty good!

Everything went great Monday afternoon with the halo placement and the skin flap. The halo only ended up needing 4 screws (which is pretty good). She will only have one skin flap procedure and so far that has been healing really well. They started with a weight of 5lbs on Tuesday. They are trying to add 1 lb a day, but because of some symptoms that she was showing they decided not to add any weight today. Otherwise, they hope to add 1 lb a day until she's up to 1/3-1/2 of her weight. A couple times a day they check her neurological functions through simple tests of the eyes, facial muscles and movement in the arms, legs, toes, etc. These tests will help prevent complications like: pain and weakness in the neck muscles, swallowing muscles and tongue, pain and weakness in the eyes, and neuromuscular complications.

She has been a brave little girl! Below are some pictures to show you what she's been up to.

We have been so blessed by all the beautiful messages and the kind gifts that Trinity has received. God has blessed us with some amazing friends and family!

The Arthur's

Friday, June 17, 2016

Halo Traction and Skin Flap

Good morning to all our family and friends! I know it has been a long time since we last posted an update on Trinity, however today we post as our family prepares for yet another procedure for Trinity. This procedure is a Halo Traction and Skin Flap that will be done on June 27th.

In May we made a trip to Gillette in St.Paul to see Trinity's Orthopedic Surgeon. Because Trinity's curve is currently 110 degrees the doctors feel that the only good option for Trinity, to get her spine straight and save her from a spinal fusion at a young age, would be to do the Halo Traction. She will need to stay in the hospital for 2-3 months. During the placement of the Halo they will also do a skin flap. Skin Flap surgery is a piece of tissue that is still attached to the body by a major artery and vein or at its base. This piece of tissue with its attached blood supply is used in reconstructive surgery by being set into a recipient site (injured area onto which a flap or graft is placed). Sometimes, the flap is comprised of skin and fatty tissue only, but a flap may also include muscle from the donor site (the area from which the flap is raised). Because of Trinity's scar tissue from many surgeries last year and her initial back closures, this becomes a road block for putting a spinal rod in. So the hope with the skin flap is that they will be able to put a spinal rod back into Trinity after the Halo Traction and prolong a spinal fusion for 2-3 years. Below I also provided a description of what the Halo is:

What is Halo Gravity Traction?

Halo gravity traction is a procedure used to reduce the degree of curvature in the spines of children with severe idiopathic or congenital scoliosis. Spinal traction is the gentle pulling of the soft tissue (joints and muscles) to help straighten the spine. A scoliotic curve allowed to reach high degrees of measurement may increase pressure on the lungs and heart. The result can be a decrease in life expectancy by up to twenty years.

Who Needs Halo Gravity Traction?

Halo gravity traction is needed by children with severe curves in their spine (80+degrees) who have not had success with other measures of correction, such as serial corrective plaster casting and serial bracing. Halo traction is also needed by those children with high curves who are not eligible for other measures of correction because of congenital defects in their spines. Many of these children are already experiencing stress to their heart and lung functions. Patients with severe infantile, juvenile and adolescent scoliosis and Scheuerman’s Kyphosis may be considered likely candidates for halo traction.

What is the Expected Outcome of Halo Gravity Traction?

Each child with severe infantile scoliosis will experience a unique outcome. Many factors, such as the stiffness or flexibility of the spine and whether congenital scoliosis with previous fusion is present, will affect the outcome. The goal of treatment is to safely bring the curve to the smallest possible degree and delay spinal fusion (if not already fused) until spine growth is close to finished, or maintain correction achieved via serial casting, bracing or instrumentation. Typically, a curve is reduced by about 50%-60%. The emphasis is placed on the child’s heart and lung health and not the number of degrees.

To be honest none of the options given to us were great ones. But, this option is the only logical one that will give Trinity the best quality of life. The circumstance is not ideal for our family, but we are trusting that with the support of our family and friends and most importantly prayer, the time will go smoothly for all of us and the 3 months will go by quickly. Miranda and Trinity will be up at Gillette for the full 2-3 months and Shannon and the other two will stay back in Iowa, visiting us on the weekends.

Prayers are greatly appreciated for our family as we make this transition. I would be lying if I said that we all felt good about this, but the truth is it makes us all anxious at the thought of being apart for that long. God keeps reminding me that He's still in control of this situation and that He will be glorified through this. That even in our most anxious moments He will be there to calm our hearts and direct our thoughts to good things.

"Trust in the Lord with all your heart, and do not lean on your own understanding, In all your ways acknowledge him, and he will make straight your paths." Proverbs 3:5-6

We will keep you all posted during the stay in the hospital. Thank you for your prayers!

With Love,
The Arthur's