Yesterday was a bumpy ride and almost gave me a nervous breakdown! I'm afraid the more days I spend here the less capable I feel at handling these very high tense/stressful situations! Yesterday brought a very scary BP situation and more fevers. We also discovered that Addie definitely has a fungal infection. The doctors also feel that there may be more of an infection going on than what they can detect. I heard "It is likely Addie has sepsis!" or "Addie is septic!" (an infection in the blood stream, really dangerous) too many times yesterday. The thought alone of sepsis gives any cancer Mom severe anxiety and especially a post transplant cancer Mom (Momcologist, I was told by a friend is the proper term for us)! We have sent cultures and so far things have been negative, thank you Jesus!!! They are covering Addie with very aggressive and broad spectrum antibiotics, and we are praying hard that these will knock out anything trying to grow!! In spite of the low blood pressure crisis, fevers and a possible infection, yesterday was still a win in my book!!! We got great news concerning her heart function and they were able to correct the BP issue quickly and minimally. Frankly, everyday she is here with us is a WIN!!!
Can I just say thank you Jesus for MEDICINE!!! Thank God for antibiotics, anti-fungals, blood products, norepinephrine, and so many other medicines that are saving my babies life!!
The plan... It is still really unclear and very dependent on what Addie's body is capable of! Ideally, they will wean her off of dialysis and her kidneys will be able to manage the fluid and her heart function will stay normal! The weaning process has already begun and time will tell how Addie responds!! They did an ultrasound today of Addie's kidneys and they looked good, which was amazing news!! Other great news... She is officially ENGRAFTING!!!! We have a white count!!! Yay!!! Even with everything that is going on, Addie's body was still able to engraft and in a really good amount of time... I find that to be a miracle in itself and could not be more thankful that He continues to be so unbelievably gracious and faithful to our little Addie Bean!! I can't scream it loud enough... God is so GOOD, praise him!!!
Here is my theory about what occurred and why we are here... Addie got acute kidney injury due to her chemotherapy regiment for transplant, which in turn led to fluid backing up into her lungs and around her heart. The fluid caused her heart to function poorly and put her into congestive heart failure. If we get the fluid balanced and give her kidneys a chance to catch up, her body will repair itself and she will be left with no permanent damage... I am also holding onto the fact that engraftment causes fevers and inflammation which explains why Addie has been spiking fevers recently! That is my HOPE, my prayer!! But let's be honest, what do I know?! A Mom can dream can't she?! That would be the best case scenario and that is what this Momcologist is going to hold onto until they tell me otherwise!! They tell me my diagnosis is unlikely but Addie is anything but "normal" and she definitely doesn't follow statistics!!
Lastly, I wanted to share something with you all... I am asked often how I do it, how am I so strong or how do I stay so positive?! And I never can come up with a good answer because in my mind I think "what am I doing, I'm far from strong and I have fears that I fight with every day?!" What I know is that each day I try to be the best Mom I can be and I work very hard at keeping it together for my family... Desperately trying to make this nightmare the least damaging as possible!! The only thing I can think of to explain how I get thru each day is JESUS... I don't feel strong, I fight to be positive and I have no idea how I manage to keep it together from day to day!! It isn't me... It is something far greater than me leading me through this journey with Addie, it is HIM!! I am so incredibly thankful that I am never alone, not for a second! And even more thankful that Addie is never alone!! Tonight in my devotional this is what it read...
I was given this devotional three days ago and each day I have opened it to read it and each day it has spoken directly to my heart... Giving me the words I needed to ease my anxiety, calm my fears and start my next day!! I just said today to the chaplain here that my heart overflows with thankfulness for Him, for our families and for everyone that is supporting us through this! I told her that I felt like I couldn't show Him or tell Him enough how thankful I am for saving my baby girl's life. The chaplain said it perfectly... She said it isn't about the number of times you thank Him that He cares about it is the direction you turn your heart. Well Jesus, my heart is pointed straight at you and I pray that I will forever be able to walk through life with my eyes wide open, continuing to see You in it all!!
Prayers please that someday soon this nightmare will be past us and we can be out of the ICU, back on schedule and watching my wild woman run the hallways of 3JCP with a perfect heart, liver, lungs and kidneys!
Go Team Addie!!