A new complication
First off all, I spent 15 minutes tonight chasing Charlotte around the halls with her IV pole and that was after she played in the playroom for an hour. Needless to say, she is feeling great and soooo ready to go home but we need her white cells to cooperate and also another unfortunate circumstance that arose today to iron out first.
We got news today that one of Charlotte's cultures has shown a second strain of another bacteria species. This species is difficult to treat. If she does have this infection, they would need to perform another operation to remove her entire Broviac (central line) because this strain tends to stick to the hardware. The team has called infectious disease in and also partnered with the bone marrow transplant team to determine best course of action. We don't want to enter transplant with any chance of infection. That could be catestrophic for Charlotte. However, only one culture has displayed this bacteria strain and so there is a chance the sample was just contamined (cross contamination can happen). Tomorrow, we will hear what they have decided is the best route to take. We have been warned that it could be determined that they should remove her central line, treat the infection, and once its treated they would go back into OR to put a new central line in place. They are weighing risk-benefits. Brian and I have questions to ask during rounds tomorrow and want to know if it's possible to wait a few more days before deciding just to see if more current cultures that have been taken this week also grow this bacteria. Perhaps that would determine if the inital sample was contaminated and we could then avoid this surgery. This news came minutes after we took a tour of the bone marrow transplant isolation unit and had an orientation of sorts. It was a very emotional morning to learn more about this next phase and then this sudden possible trip to the OR.
After a private giant cry out on my behalf because I just don't want her to go through anymore then she needs to, I realized part of my grief was fear and the other was selfish. I just want her home. I want normal. I want her healthy running around being a playful pesky little sister. I want her to be a typical patience-trying-exhausting-yet lovable two year old who doesn't have life threatening risks at every damn corner! But what I want doesn't matter. That is not her calling. That is not her life. She was made to walk a tougher path. She is leading the way for me and so many to watch in awe as she demonstrates what she and God and really ALL of us are capable of. If she can do this, then surely I can. Brian always said wisely how he would take all the small speed bumps in this battle as long as we got the big breaks when we needed it. And we have! All the things that have truly mattered have been a success and she has won all the big battles! So this could potentially be another small road bump. But why does every set back feel like a slap, a kick in the gut knocking out our wind? Because really, it's not. What we perceive as a set back is often a well timed, intentional stepping stone along this journey. These setbacks feel like huge disappointments because we are tired of being reminded that at every turn, our daughter is fighting for her life. And that reminder is painful, it's excruciating and heart wrenching. We have these moment of heart break because at the end of the day we are just ordinary parents who have to watch the little person they love most go through this. And we want to make it stop and take it all away. But what we want doesn't matter. She teaches us that our wants are small matters compared to what God has in mind. And our faith reminds us that His plan is better then our own. We have to believe this truth or else we would be a puddle of tears on the floor...no good for Charlotte or each other or our other children.
So tonight, we need your prayers as we always do. But perhaps specifically to get our girl to transplant in the best and safest way we can no matter what that entails. Please God, guide our team to come to a consensus that helps our little girl keep going and keep moving in the safest way possible for her. Again, we turn our trust over to the doctors and to God. Because, we are fierce and strong and determined parents, but ultimately we are powerless observers trying to be brave and calm for our little warrior who at 2 years old, looks to us for comfort and security. Atleast we have that to give.
Video clip below because I think we could all use a smile about now. So she will give us one
Video Clip: me trying to keep up with C
We got news today that one of Charlotte's cultures has shown a second strain of another bacteria species. This species is difficult to treat. If she does have this infection, they would need to perform another operation to remove her entire Broviac (central line) because this strain tends to stick to the hardware. The team has called infectious disease in and also partnered with the bone marrow transplant team to determine best course of action. We don't want to enter transplant with any chance of infection. That could be catestrophic for Charlotte. However, only one culture has displayed this bacteria strain and so there is a chance the sample was just contamined (cross contamination can happen). Tomorrow, we will hear what they have decided is the best route to take. We have been warned that it could be determined that they should remove her central line, treat the infection, and once its treated they would go back into OR to put a new central line in place. They are weighing risk-benefits. Brian and I have questions to ask during rounds tomorrow and want to know if it's possible to wait a few more days before deciding just to see if more current cultures that have been taken this week also grow this bacteria. Perhaps that would determine if the inital sample was contaminated and we could then avoid this surgery. This news came minutes after we took a tour of the bone marrow transplant isolation unit and had an orientation of sorts. It was a very emotional morning to learn more about this next phase and then this sudden possible trip to the OR.
After a private giant cry out on my behalf because I just don't want her to go through anymore then she needs to, I realized part of my grief was fear and the other was selfish. I just want her home. I want normal. I want her healthy running around being a playful pesky little sister. I want her to be a typical patience-trying-exhausting-yet lovable two year old who doesn't have life threatening risks at every damn corner! But what I want doesn't matter. That is not her calling. That is not her life. She was made to walk a tougher path. She is leading the way for me and so many to watch in awe as she demonstrates what she and God and really ALL of us are capable of. If she can do this, then surely I can. Brian always said wisely how he would take all the small speed bumps in this battle as long as we got the big breaks when we needed it. And we have! All the things that have truly mattered have been a success and she has won all the big battles! So this could potentially be another small road bump. But why does every set back feel like a slap, a kick in the gut knocking out our wind? Because really, it's not. What we perceive as a set back is often a well timed, intentional stepping stone along this journey. These setbacks feel like huge disappointments because we are tired of being reminded that at every turn, our daughter is fighting for her life. And that reminder is painful, it's excruciating and heart wrenching. We have these moment of heart break because at the end of the day we are just ordinary parents who have to watch the little person they love most go through this. And we want to make it stop and take it all away. But what we want doesn't matter. She teaches us that our wants are small matters compared to what God has in mind. And our faith reminds us that His plan is better then our own. We have to believe this truth or else we would be a puddle of tears on the floor...no good for Charlotte or each other or our other children.
So tonight, we need your prayers as we always do. But perhaps specifically to get our girl to transplant in the best and safest way we can no matter what that entails. Please God, guide our team to come to a consensus that helps our little girl keep going and keep moving in the safest way possible for her. Again, we turn our trust over to the doctors and to God. Because, we are fierce and strong and determined parents, but ultimately we are powerless observers trying to be brave and calm for our little warrior who at 2 years old, looks to us for comfort and security. Atleast we have that to give.
Video clip below because I think we could all use a smile about now. So she will give us one
Video Clip: me trying to keep up with C
The video has put a HUGE smile on my face. You have my thoughts and prayers and positive vibes that Charlotte will get to where she needs to be for the bone marrow rescue. Sending lots of love your way.
ReplyDeleteOh, I love the video. You better wear sneakers to keep up with Charlotte! Prayers and love to you all. xoxo
ReplyDeletePlease God, guide Charlotte's entire medical team to come to a consensus that helps her keep going and keep moving in the safest way possible for her.
ReplyDeleteThe world NEEDS precious
"exercise enthusiasts" just like Charlotte! Thank you for sharing Jenn and for asking for what you need. Prayers for your family's continued strength and faith. Buckle up, deep breaths and keep going with this ride!
She has such a wonderful spirit... and awesome fashion sense! ;) Prayers for smooth sailing to the transplant.
ReplyDelete