Yesterday was emotional.
So, we met with the transplant team. They thought it would be better to meet with both of us and explain the plan moving forward because it is a lot and complicated. They knew I would have a lot of questions (because I always do) and they were right meeting in person was so much better than over the phone.
It’s so much to go over that I don’t even know how I can do it in one update.
Kylie has adenovirus deep in her lungs. We don’t know how long it’s been there because it has been months since we have tested it from this area.
Usually, we test her blood or trach area, but this virus is really good at staying in just one area so it can be overlooked easily.
There is a possibility that this virus is contributing to Kylie declining so fast. However, now that we have found it, we can treat it. So Kylie got her first dose of the treatment yesterday. They can give this treatment once every week until the virus is gone.
The complicated part is that we need to basically turn her immune system back on to help her fight this virus. As most of you know your immune system when you are a transplant patient is not your best friend. In order to turn her immune system back on they will stop giving her rejection medicine. I’ll be honest, hearing this completely shocked me because I am very strict on making sure Kylie receives her rejection medicine on time every day. So to me it almost seems unnatural, but I trust our team.
Now with her immune system being turned back on, there is a possibility of the antibodies in her blood increasing. However, since we just gave that one chemo drug, they are hopeful that it is still working, and that will not happen.
Here’s the part where I see God in this whole situation and proves that even though we can’t see it and things may seem bad, God is already working on the answer.
The one thing that had our team a little nervous about saying Kylie is a good candidate for a second transplant is that we never had a clear answer as to why her antibodies grew so fast and attacked her lungs so quickly.
Before moving forward with another transplant, they wanted to have an answer to this question so that we could prevent it from happening again, which makes complete sense to me, so I understand.
Yes, having adenovirus is not good. BUT since we don’t know how long it has been festering in her lungs, then there is a good chance this is the reason for the high antibodies and for the fast decline.
If we can find a way to walk this narrow line between treating the virus and keeping her antibodies from increasing again then this is almost an answer to a prayer because we will have an answer as to why her rejection got so bad and it’s treatable.
After talking to the infectious disease team, they are very impressed with the way Kylie is presenting despite having high numbers of the virus (22 million). Kylie is happy and playing, just a little extra sleepy from the virus.
Her blood gases have not been great, but according to our team, even though the title volume is at 100 there are other settings we can adjust to help on the ventilator.
Yesterday, I felt so scared before talking to our team and hearing that Kylie had the virus again.
After talking to our team, I felt so much better than I have in days because God reminded me that He is in charge.
I am very much aware that God does not always answer our prayers the way that we want. That’s why I always pray for God’s will to be done.
This is another example that God works in ways we don’t understand and when things seem like they cant get any worse, “God takes what the enemy meant for evil and uses it for good.”
To everyone that kept the faith when it seemed like it couldn’t get worse, thank you from the bottom of my heart. Your kind words and prayers kept me going. Thank you so very much.
This doesn’t mean that everything moving forward is going to be easy, but it does mean that there is hope.
Please keep praying for Kylie
As always, we love you all so very much. Y’all mean so much to us.
