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
Monday, May 11, 2015
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!
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.
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!!
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
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!!
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