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!!

Friday, May 15, 2015

Preparing for Home!

I hope I'm not jinxing myself with this post, but looks like we will be headed home tomorrow! Both surgeons will come in tomorrow morning and change the dressing on her back and around her drainage tubes. If all looks good we should be discharged by 12:00 tomorrow!!

It hasn't been super easy getting her up in the brace and wheelchair these past 2 days, but we are slowly making progress. I think right now the hardest part is weaning her off some of the pain meds. We will get trained tomorrow night on how to give her the IV antibiotics over the next 3 weeks.

Trinity is doing pretty good overall. She tolerates her brace and the wheelchair for about an hour and then she needs a break. Personally I can tell a difference in her posture without the rod. They did an x-ray today so we know where she's at with her curve and can keep an eye on it while the rod is out. We will come back in 2 weeks to get the drainage tubes out, run labs and look at the wound. Then Dr. Walker will see about once a month until we get a new rod figured out.

We are just excited to here some good news for a change! We still need the prayers to make sure that the infection gets cleared up with the IV antibiotics and that her little body can heal from all these surgeries. Also, pray that her scoliosis can be stable while using the TLSO, that way her body can heal for 4-6 months before they put in another rod.

Wednesday, May 13, 2015


So I have a few thoughts before Trinity faces surgery today...

Last night before Trinity and I shut the lights off for bed, her nurse and I had a very interesting conversation. But at the end of our conversation she asked me, "Do you feel pity?". I asked, "For Trinity?", she said, "No, for yourself?". Hmmm... I actually had to think about this for a couple seconds. To be honest, I would have said no a few weeks ago, but over the last week, especially Monday night, I developed this "poor me" attitude. She really opened my eyes and by just asking me that one question, she spoke Truth to me. One thing Shannon and I have always strived for throughout the 7 years of Trinity's life, is that we never let others feel pity for us. That they would see the joy that Trinity brings to our lives, and despite our circumstances, we are just as happy and blessed as the person sitting next to us with 3 healthy kids. This situation we are in right now is definitely not ideal, but what's faith if your living in the valley? God wants me to look at this mountain we are climbing and rejoice through every step and trial we face.

Another reminder God placed on my heart was my theme "words" for the year 2015. Back in January, our women's ministry team each came up with a theme word and verse for the year 2015. This was hard for me, because I wanted to know for sure that the word and verse were both something God wanted me to focus on. After much thought and prayer, God gave me words and a verse. One of my words was, perseverance: steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement. At the time that He gave me this word I really wondered why, but now I see. Sometimes we run the race of life and challenges occur. We may get injured along the way and the road might be rough, but we are called to persevere through it all. Despite how difficult the last 3 weeks have been, I'm going to continue this race with faith, perseverance and joy. Yes I said "JOY", because there is a plan much bigger than the one I currently see and I may never see all that is accomplished through His plan, but I trust that nothing in ever wasted with God.

Surgery is scheduled for 11:30 today. So far no new bacteria has grown from the cultures. The plastic surgeon is hopeful that he can close the wound without doing a skin graph, but he won't know for sure until he gets in there and works with it. If all goes as planned today, we will be discharged on Sunday or early part of next week. She will still go home with IV antibiotics for a couple weeks.

"Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it." 1 Corinthians 9:24
"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you." 1 Peter 5:6-7

Monday, May 11, 2015

"Walk by Faith."

Trinity and I had a beautiful weekend with her siblings and dad, perfect way to make her smile!
The title of this post fits perfect with the way the last week has gone and especially fitting for the news we received today. Trinity will be headed back into surgery today around 4:00, but unfortunately they will be removing the rod. Over the weekend, a new bacteria grew from the top part of the rod, from the cultures they took on Wednesday. Dr. Walker feels this is what is best for Trinity and give her body the chance to get rid of the infection and heal. They will keep the rod out for up to 6 months and look at putting in a rod similar to the one she had before the Magec rod. Maybe after 2-3 years we can look at doing the Magec rod again when her body has some more mass to support it. We still don't know what the closure will look like today, whether they will do the skin graph or just try to close it overlapping the skin. I'm also not sure what this means for the time frame we will be sent home. Hopefully we can still go on Wednesday and continue the IV antibiotics at home.
Once again Shannon and I are reminded that God is in control! "We walk by faith, not by sight." 2Corinthians 5:7. This would not be the plan that we would have for Trinity, but God sees the bigger picture. In my devotion the other day they related it to a blind man that uses a seeing-eye dog. He believes and trusts what the dog sees and signals to him. The dog has something the blind man doesn't have: sight. And it's the same with us and God. He will lead us down the path that is right for us. It may not be the one we would choose, but God has our tomorrow already planned out, even though we haven't been there yet. He works outside of time, so He's not held back by the limitations we labor with.
Please continue with the prayers! We appreciate all the support we have received by text, messages on Facebook and phone calls. We have also been blessed with visitors and some beautiful flowers to make our room smell wonderful. God has blessed our family with such wonderful people and that has made this experience so much easier!
"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." Isaiah 41:13

Friday, May 8, 2015

Plans Change

I guess we should know by now, God's plan always trumps ours!
Trinity went in today for surgery with the plan to close her back up, but the cultures from Wednesday grew a bacteria and Dr. Walker didn't feel comfortable closing it. So he cleaned it again, attached the wound van and ran more cultures. They also put a PIC line in, that way when she goes home we are able to do IV antibiotics for a few weeks.
The plastic surgeon also joined Walker in surgery to exam her again and see what his course of action will be when he closes the wound. He had previously thought he could use the muscle and tissue around it to close it up, but he's afraid if he does this it will stretch the skin to much and make it tight, giving the rod an opportunity to make it's way through the skin. So he will more than likely do a skin graph from her back thigh area to cover the wound. He's done this on a number of spinal cord and Spina Bifida patients in the past and feels this area works best, especially with the little feeling they have there.
Dr. Walker also shared his concerns with the rod. He's still not 100% sure the rod can be saved. So we still need prayers for that!
Trinity's very excited to see her siblings and dad tonight! That's all she has talked about in the past 24hrs. It will be good to see a smile on her face and a sense of normalcy. We are also blessed to have a Ronald McDonald room for the weekend, that way we don't have to leave the hospital.
Thanks again for the prayers, can't say it enough!

Thursday, May 7, 2015

Surgery on Friday

Just wanted to give everyone an update on Trinity.
Surgery is currently scheduled for 9am. The plan is still the same, to go in and close the back with the plastic surgeon. The cultures are not back, but I think the surgeons are pretty confident with the way the back looks with the wound vac, they should be able to close it. More than likely they will put a PIC-line in also for her to go home with, that way she can get IV antibiotics over the course of a couple weeks.
She's getting lots of rest today, which is good. Not sure why I can't find the time to close my eyes for awhile.
Thanks again for all the prayers. Please lift her and the doctors up tomorrow morning as they make decisions to close her wound.

Wednesday, May 6, 2015

Positve News!

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!!


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.

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!