Trinity is out of surgery and back up to the room. Dr. Walker opened the top incision up to check the rod and everything looked good. No signs of infection. He had cultures taken of both the upper and lower incisions, we will get the results for those sometime Friday. The lower opening looked better than it did Monday. It's improving and that is promising. He cleaned it out and attached the wound vac to it again. The plastic surgeon made his way into the OR and took a look at Trinity. If they cultures come back negative then on Friday they will close the wound by taking muscle and tissue from somewhere else and putting it where the wound is to get it closed. He's still not 100% sure that will be the plan, but it's what they have in mind now. The will also send her home with an IV so she can get infusions in Pella and not have to stay here to get antibiotics.
She's resting comfortably in her room. From here on out it is basically a waiting game to see what the culture shows. We are still not sure that the rod will be saved, but right now it looks promising! Your prayers are being heard and felt, and He is in action taking care of Trinity and those that are taking care of her. I have had so many people reach out to us, some we don't even know, that are praying for Trinity and the situation. Thank you so much for your prayers and support!!
Wednesday, May 6, 2015
Surgery
Surgery is scheduled for 10am. The plan is to clean out the bottom part again, check for any infection and attach the wound vac again. The plastic surgeon will also be joining him to evaluate Trinity and see what options they have to close her up. Dr. Walker stopped by this morning and is thinking that he should open up the top part just in case the infection got up there.
Dr. Walker needs our prayers! I'm sure he is overwhelmed with what decisions to make and what are the best ones for Trinity. Lift him up and pray that God controls his thoughts and his actions. That there would be no doubt in his mind for what step to take next.
Although the sleep is not great here, I have to admit I'm in good spirits. I woke up this morning to so many people praying for our precious girl, our family and Dr. Walker. We are truly blessed to have all of you in our lives, to know that even on the most difficult days, when it's hard to pray, someone is already lifting us up to our Father.
Dr. Walker needs our prayers! I'm sure he is overwhelmed with what decisions to make and what are the best ones for Trinity. Lift him up and pray that God controls his thoughts and his actions. That there would be no doubt in his mind for what step to take next.
Although the sleep is not great here, I have to admit I'm in good spirits. I woke up this morning to so many people praying for our precious girl, our family and Dr. Walker. We are truly blessed to have all of you in our lives, to know that even on the most difficult days, when it's hard to pray, someone is already lifting us up to our Father.
Tuesday, May 5, 2015
Magec Rod
On April 7th Trinity had a MAGEC Rod put in to replace her old rod. The MAGEC (MAGnetic Expansion Control) System is used in the treatment of severe progressive spinal deformities. MAGEC is an adjustable growing rod that utilizes an External Remote Controller (ERC) to non-invasively distract the implant. Following a surgical procedure to implant the MAGEC rod, the device is distracted using the MAGEC ERC, thereby eliminating the need for additional surgeries to distract the spine, as with traditional growing rods.
We knew when getting the rod there would be risks that her body wouldn't hold the rod due to her small frame and how thin her skin is. Below is a picture of her x-ray to show you the rod. The bottom piece is a screw that is put into her pelvic bone.
On April 27th Trinity was admitted back to Gillette because of a small opening in the bottom part of the incision. They cleaned it out and closed it that day. Then we were admitted for 3 days and discharged on April 30th.
Unfortunately on Friday we found another opening that was much bigger than the last opening (her incision was covered up by bandages, that's why we didn't see it until Friday). Gillette had us watch it over the weekend until Trinity's surgeon got back on Monday from a conference. On Monday we made a trip back up to Gillette to have the opening looked at by Dr. Walker. We knew before leaving that he would need to do surgery, we just didn't know exactly what to expect and what the course of action would be. We got up here at 4:30pm. Dr. Walker examined Trinity and the conclusion was that the opening was for sure infected and that the infection had probably traveled down to the rod. He would go in and clean the incision out and then examine how far the infection had traveled and clean any infected areas.
The biggest concern was if the rod is infected and how bad. Sometimes they can be cleaned and antibiotics will take care of it and then there are times where the infection can not be cleaned off the rod and the device needs to be taken out to allow the body to get rid of the infection.
After going in for surgery he found that the infection had traveled to the lower part of the rod around the screw. He washed it out and also got as far up the rod as he could and washed that area out too. He left the incision open and hooked a wound vac up to it to allow the drainage and infection to get out. Below you can see a picture of that.
On Wednesday, they will go back in and clean the area out again and check for any infection. If there is no signs of infection, then on Friday a plastic surgeon will close the back up. We are still not sure what the plan is for closing it, since that spot will not close with a normal surgery. We hope to know more tomorrow. If there is still evidence of infection, then he will leave it open and continue with the wound vac and relook at it on Friday. The worse case scenario is that he would have to remove the rod and allow her body to heal from the infection for up to 6 months and treat it with antibiotics. As of now we know we will be here for at least a week if not longer. This is hard on all of us, especially Aubree and Trew.
Of course none of this is what we had planned and definitely not what we wanted for Trinity. She's been such a trooper and very positive through all of this. She amazes me with her strength and the way she perseveres through all of this.
We need your prayers!! God knows what is best for Trinity and we want that. "If this rod is meant to stay, then Lord heal it and if it's not, don't put any doubt in Dr. Walker's mind." Please pray for healing, strength and peace for any decisions that need to be made. Also, I'm personally asking for prayers for me. I'm exhausted, emotionally and physically and I miss my family!
We love all of you so much and greatly appreciate the prayers and support!
Unfortunately on Friday we found another opening that was much bigger than the last opening (her incision was covered up by bandages, that's why we didn't see it until Friday). Gillette had us watch it over the weekend until Trinity's surgeon got back on Monday from a conference. On Monday we made a trip back up to Gillette to have the opening looked at by Dr. Walker. We knew before leaving that he would need to do surgery, we just didn't know exactly what to expect and what the course of action would be. We got up here at 4:30pm. Dr. Walker examined Trinity and the conclusion was that the opening was for sure infected and that the infection had probably traveled down to the rod. He would go in and clean the incision out and then examine how far the infection had traveled and clean any infected areas.
The biggest concern was if the rod is infected and how bad. Sometimes they can be cleaned and antibiotics will take care of it and then there are times where the infection can not be cleaned off the rod and the device needs to be taken out to allow the body to get rid of the infection.
After going in for surgery he found that the infection had traveled to the lower part of the rod around the screw. He washed it out and also got as far up the rod as he could and washed that area out too. He left the incision open and hooked a wound vac up to it to allow the drainage and infection to get out. Below you can see a picture of that.
Of course none of this is what we had planned and definitely not what we wanted for Trinity. She's been such a trooper and very positive through all of this. She amazes me with her strength and the way she perseveres through all of this.
We need your prayers!! God knows what is best for Trinity and we want that. "If this rod is meant to stay, then Lord heal it and if it's not, don't put any doubt in Dr. Walker's mind." Please pray for healing, strength and peace for any decisions that need to be made. Also, I'm personally asking for prayers for me. I'm exhausted, emotionally and physically and I miss my family!
We love all of you so much and greatly appreciate the prayers and support!
Monday, October 20, 2014
Walk-n-Roll 2014
On Saturday our family and friends participated in the Spina Bifida Association of Iowa's Walk-n-Roll. We had such a great time! Team Trinity had 36 people there to walk and show their support for Trinity. The walk is to make awareness for Spina Bifida and to also raise money to support families that are affected by it. I will admit it was pretty cold, but I would say everyone still had a great time! Trinity rode in her Action Trackchair and got a lot of compliments. It was a great opportunity for Shannon and I to share how the Trackchair has benefited Trinity. Below are some pictures from the day. Team Trinity raised $1235.00!!!
Thank you to all that came and also financially supported Team Trinity!!! We look forward to doing this again next year!!
Tuesday, August 5, 2014
Summer in Review
I can't believe in 2 weeks the kids will be headed back to school, time has flown by these past 3 months. We have had a great summer, enjoying more time with our family, now that we are closer. This week the kids and I are headed to Minnesota for some doctor appointments and to spend some time with our friends. To say we are excited is an understatement! I can't believe it has been almost 4 months since we have been there. Looking forward to some Caribou Coffee, time with friends and to attend a worship service at Westwood. The kids are excited to spend some time with their friends. God richly blessed us while we were in Minnesota with such wonderful people. I remember thinking while living there that it never felt like home, but now heading back I think it was definitely home to us!
The kids have spent a lot of time at the local aquatic center and it has been wonderful for Trinity. She wheels right into the water with no obstacles. I love watching her at the pool, so independent! Trinity also cut 8 inches off her hair to donate. We've had some visitors from Alaska, Northern Iowa and Minnesota. In a week we will camp with my parents at the Iowa State Fair and I'm sure we will indulge in some very fattening food! That will basically end our summer before school starts.
Thursday and Friday, Trinity has some appointments at Gillette. They will check her back (growing rod) and she has some tests for urology. She's had a lot more frequent UTI's, so praying that we find some answers.
Here are some photos to recap our summer, hope you have enjoyed your summer too!!
The kids have spent a lot of time at the local aquatic center and it has been wonderful for Trinity. She wheels right into the water with no obstacles. I love watching her at the pool, so independent! Trinity also cut 8 inches off her hair to donate. We've had some visitors from Alaska, Northern Iowa and Minnesota. In a week we will camp with my parents at the Iowa State Fair and I'm sure we will indulge in some very fattening food! That will basically end our summer before school starts.
Thursday and Friday, Trinity has some appointments at Gillette. They will check her back (growing rod) and she has some tests for urology. She's had a lot more frequent UTI's, so praying that we find some answers.
Here are some photos to recap our summer, hope you have enjoyed your summer too!!
Wednesday, May 14, 2014
Welcome Home!
I can say that we are pretty much settled into our new home! It's been almost 4 weeks since we left our friends and home in Minnesota (time goes by so fast). It was definitely a hard move for me as I left some great friends and a wonderful church, but knowing this was all God's plan made it so much easier.
Upon arriving at our new home, the sellers had left us a welcome sign on the front of the house and a beautiful bouquet of flowers on the countertop! I'm in love with my new house, but what makes me the happiest is seeing the joy that Trinity expresses as she wheels around the house with freedom and no obstacles. She comes in and out of the house as she pleases and wheels from one end of the house to the other end (all by herself!). God has truly blessed us with a home that fits the needs of Trinity.
The girls started school just 2 days after we moved into our house. They are loving it and making some great friends! We also got to Pella just in time for Tulip Time. If you have never been to Tulip Time you should really come experience sometime. Most of the tulips were up and bloomed and although the weather was chilly on Thursday and Friday, it was gorgeous on Saturday. Both the girls were in the parades and they each were also on a float. Trinity got to ride on the future Tulip Queen float. She was in heaven!!! She was smiling from ear to ear! I wish I could have video taped her when the float passed by!
Thank you for all the prayers as we made the transition to our new home and a new school for the girls!
Tuesday, April 8, 2014
Spring is Here!!
I might be jinxing myself with the title of this blog, especially since we had snow on the last day of April last year! Oh well, it's gorgeous outside and my kids are playing, laughing and getting dirty!!
Last week Trinity had her spinal growing rod lengthened, phenol injections in her legs and her g-j tube exchanged. It was a very busy day for Trinity. She did great! Unfortunately this time Trinity had significant pain. Usually we don't need to use narcotics to control her pain, but this time she needed them for 2 days. By the third day we were able to use Advil. Luckily this all happened while the girls were on spring break, so she didn't have to miss any school and my mom was here to help.
With all this craziness, we are getting ready to move in a week! I can hardly believe it is already here and this new chapter in our life is going to start. We have bought a home and close on it on April 21st!! We are so excited to move into this beautiful home. God heard our prayers and answered them. The home we will move into is all one level with no stairs for Trinity to be challenged with. It also has a bathroom that is handicap accessible. How amazing is that?!? Did God provide for us our what?!? The couple that we are buying the house from happens to be a physical therapist that Trinity had when we were in Iowa, between moving from Michigan to Minnesota. She seen my post on Facebook about us moving and asking for prayer as we searched for the right house. Her and her family had made the decision to move to Missouri, but weren't thinking of putting their house on the market until late spring, but when she seen my post she felt lead to reach out to me about their home. It could not be a more perfect fit for our family and what's even better is that it has been filled with love by someone we know!! God is good!!!
We also have been busy getting all of Trinity's appointments in before we move, going through our belongings and getting rid of things and getting together with our friends to say our final goodbyes. We have made some amazing friendships in Minnesota and it will be hard to say goodbye. With all the joys of moving, there will also be a lot of tears. So if you see me over the next two weeks and I look like I have swollen eyes, just give me grace!!
Prayers would be appreciated as we make this transition. Especially as the girls start in a new school for only a month before summer break starts.
The next time you see us on the blog our zip code will be 50219!!!
**Trinity with her teachers and staff**
Last week Trinity had her spinal growing rod lengthened, phenol injections in her legs and her g-j tube exchanged. It was a very busy day for Trinity. She did great! Unfortunately this time Trinity had significant pain. Usually we don't need to use narcotics to control her pain, but this time she needed them for 2 days. By the third day we were able to use Advil. Luckily this all happened while the girls were on spring break, so she didn't have to miss any school and my mom was here to help.
With all this craziness, we are getting ready to move in a week! I can hardly believe it is already here and this new chapter in our life is going to start. We have bought a home and close on it on April 21st!! We are so excited to move into this beautiful home. God heard our prayers and answered them. The home we will move into is all one level with no stairs for Trinity to be challenged with. It also has a bathroom that is handicap accessible. How amazing is that?!? Did God provide for us our what?!? The couple that we are buying the house from happens to be a physical therapist that Trinity had when we were in Iowa, between moving from Michigan to Minnesota. She seen my post on Facebook about us moving and asking for prayer as we searched for the right house. Her and her family had made the decision to move to Missouri, but weren't thinking of putting their house on the market until late spring, but when she seen my post she felt lead to reach out to me about their home. It could not be a more perfect fit for our family and what's even better is that it has been filled with love by someone we know!! God is good!!!
We also have been busy getting all of Trinity's appointments in before we move, going through our belongings and getting rid of things and getting together with our friends to say our final goodbyes. We have made some amazing friendships in Minnesota and it will be hard to say goodbye. With all the joys of moving, there will also be a lot of tears. So if you see me over the next two weeks and I look like I have swollen eyes, just give me grace!!
Prayers would be appreciated as we make this transition. Especially as the girls start in a new school for only a month before summer break starts.
The next time you see us on the blog our zip code will be 50219!!!
**Trinity with her teachers and staff**
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