Tuesday, August 9, 2016

Surgery Complete

Surgery is complete and Trinity has her new hardware. Surgery started on Monday around 9:15am and she was back up to her room around 2:30pm. The halo is gone and her new spinal rod is in. They put in her new rod with the help of a device called O-Arm Surgical Imaging System. This helped them with the placement of the screw in the pelvic bone. That way they could burry the screw under bone and tissue so it would not be prominent and cause the skin to breakdown. She has two incisions, one on the top and one on the bottom. This will all hopefully help with the healing process. She will need to lay flat for a couple days to help relieve pressure on her back. Tomorrow they will remove the bandages to look at the incision, which we are all anxious to see. If they can get her pain managed, get her new TLSO adjusted and the incision looks good, we could be home by Friday or early next week. Praise the Lord! She's having a rough day today with pain, but hopefully they an get that under control soon.

You can see some x-rays that they took before traction, during traction and after the spinal rod was placed.

X-Ray on left from before traction at 105 degrees and on the right is during traction at 99 degrees

X-Ray after the spinal rod was placed at 65 degrees

Please continue your prayers for Trinity. That they can control the pain and that her incisions would heal with no problems.

The Arthur's

Wednesday, July 27, 2016

Week #5

Can't believe we are on our 5th week of being here. Luckily time seems to be going by quickly. Trinity is loving her time here at Gillette! I have also had some really great opportunities while being here to share my faith with others, but to also listen and learn about others and their circumstances and then pray with them. It has been fun to see God at work while we are here!

Trinity with her new friend Carissa

Today we found out some good news. Surgery will be scheduled for August 8th, less than 2 weeks away! As of yesterday Trinity had reached her max weight for traction at 17lbs. Sometime I challenge you to pick up 17lbs in weight with just one hand and see how that might feel on your head. She's having a lot more headaches with this amount of weight, but she is impressing everyone with her perseverance through all of this. I am so amazed by how well she has done with the weight. Her curve has corrected about 15 degrees since starting the traction. They are happy to see an improvement, but I think they were hoping to see more. On the 8th they will put in a spinal rod. The plan is to have 2 ortho surgeons and a plastic surgeon in the OR at the time of surgery. Their biggest concern is that the skin on the back will not close, but they are working hard to come up with a plan that will hopefully prevent that.

Trinity with her friend Json and Pokey the Bear(Json bought it for Trinity)

We would appreciate your prayers as we anticipate the upcoming surgery. Praying that God directs the Surgeons as they make plans for placing the rod and are fully prepared for surgery on the 8th. Also that Trinity's skin would surprise everyone and not cause an issue after the rod is placed.

Playing in the water and shaving cream are her two favorite things to do with the nurses!

We are so thankful for all of you!!!

Monday, July 11, 2016

Week #3 Update

I could never be a writer because I struggle just titling our blog post! :-)

Things are going really well here. Trinity is just starting week #3 in the halo and is a rock star so far! Her current weight on the traction is 10 lbs and they hope to get another 2-5 lbs on there. Tomorrow she will have an x-ray that will hopefully show them how her spine is responding to the traction. In a couple weeks they may have a better idea of when the spinal rod could be placed.

So far we are adjusting well to our new way of life. My husband is amazing and brought me up my own coffee pot so I could brew my own right from the comfort of my room! The nurses are making comments about getting their morning coffee from our room. ;-) Aubree is staying with Trinity and I this week. Trinity has a lot of activities in mind for her!

We continue to appreciate all the prayers. This is definitely a trying time for our family to be apart, but God has already done some pretty amazing things during our stay here. Shannon has had the opportunity to pray with multiple families and a homeless guy during his run on Saturday. Our family was blessed to serve a meal at the Ronald McDonald House on Saturday night and it was nice to actually cook a meal and bless others.

Our family and friends have shown us so much love over the past 2 weeks. Trinity is fully stocked with coloring books, crafts and books to read. I have been blessed also with books and yummy snacks. Shannon and the kids are being very well fed while at home and have received some great gift cards to help with gas and food during their travel here. Our words of gratitude will never be enough to express how deeply grateful we are for the support we have felt.


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

Tuesday, June 2, 2015

Thank You!!!

All your prayers over the past 2 months have been heard and felt. Yesterday we made another trip to Gillette to have Trinity's back looked at and to have blood work done. Everything looks great! Trinity's back is healing after a week of doing a wet to dry method. Her blood work also looks great, all her levels are at a normal range. The plan moving forward is to continue to treat her open wound, twice a day, with vaseline over it and then covering it with a bandage. She will also be on IV antibiotics until Friday night and then they will switch to Bactrim for 4 weeks. She will have a checkup again in 4-5 weeks. The plan for her scoliosis is to check it every couple months with an x-ray and Dr. Walker is thinking 4-6 months until a new rod can be placed. Her back needs time to heal and we also need to make sure she's infection free.

This is all great news, especially after the past month of being in and out of the hospital. All your prayers and support has helped our family in so many ways. Thank you will never be enough to express our gratitude!

**Below is a picture of Trinity's back currently.

Tuesday, May 19, 2015

Home Sweet Home!

It feels good to be home. To have Trinity smiling again with her brother and sister and to hear her laugh when they do something crazy. I haven't heard that laugh much in the past two weeks, so it's great to hear it again. Trinity is feeling pretty good. She's definitely not herself yet, but that's going to take some time. She's still having a lot of pain and discomfort, and gets tired pretty easy.

I have to admit as great as it is to be home, there were a lot of responsibilities that come with being home. On Saturday night, Shannon and I were taught how to do IV infusions for Trinity three times a day. It's not so nerve racking when we have to give them during the day, but the one in the night is challenging. To remember that the line can have no air in it, saline flush it before and after the antibiotic. But most importantly remember to keep everything sterile, because otherwise she will get an infection in her blood. It's a lot to remember when you are sleep deprived. She also came home with two drainage tubes. These have been a bit challenging, but mostly just in making sure they don't get pulled out. We go back next week for a follow-up appointment with the doctors and to have some lab work done. The IV infusions will last for four weeks, as long as the labs come back and show improvement, and the drainage tubes will come out next week at her appointment.

This weekend I found myself with a bad attitude and that is not where I want to be. My devotion this morning was on "Dealing With Change". Hmmm...I think I can relate with this one. We pray to God for success, but we resist the changes needed to get there. I was ready in so many ways to get home, but now that we are home there is a lot more responsibility than before I left. God knew that these changes were coming, so although I didn't recognize it at the time, He was preparing me and equipping me for these changes. In "all things", including things you don't like, God has a "purpose", and He's working for your "good". You'll look back and say, "If I hadn't gone through that, I wouldn't be experiencing the blessing of God I enjoy today." (some of this was taken from my devotion, "The Word For You Today")

Our family has been blessed in so many ways over these past two weeks! "Thank you" sometimes doesn't feel like enough, but I hope you all know how much we appreciate your prayers and acts of kindness. Please continue to remember Trinity in prayer for healing and also that her scoliosis.

Much Love!!