Today was hands down the hardest day we have faced, we were given news today that was beyond our worst nightmare! We were told that Addie has congestive heart failure and the cause for it is still unknown and due to this her heart and lungs are retaining too much fluid! We were also told that her kidneys are still not functioning properly (only 20%) and the only way to save her was to perform dialysis! They have tried every other route to remove the fluid and nothing has worked due to her poor kidney function! The doctors explained to us that dialysis was the only option to remove the extra fluid around Addie's lungs and heart and in order to perform dialysis Addie would need to have a large catheter placed into a vein in her leg. They also stated that because Addie's heart and lungs were working so hard and her cardiac function was so poor they felt it necessary to intubate her and place her on a ventilator. This would allow them to control her breathing and take the stress off of her lungs, allow them to rest! With the sedation and intubation came a great risk, a risk that Reed and I were not prepared for. The ICU doctor (Dr. Tina) told us that because Addie's heart function was so poor there was over a 50% chance that when they intubated her that she would go into cardiac arrest and die. She stated that they would do CPR if this occurred but the likelyhood of her heart regaining function would be nearly impossible. She also informed us that if Addie went into cardiac arrest they could place her on a machine that would support her heart and lungs called ECMO. However, because Addie is post transplant and has such poor bone marrow function at this time the chances of her coming off ECMO and surviving were near 0%. She also told us that ECMO would be very hard on Addie and while on that machine she would look much different and have large catheters sticking out of her neck and leg. The nurses and doctors said that it would be incredibly hard to see her like that and her risk for infection and bleeding would be extremely high. Dr. Tina told us that she would support us in any decision we made and that there was no wrong decision, it was all ours to make.
What was happening?! How did this happen and why Lord, why?! Our precious Addie had a 50% chance to survive through today, and the decision when to start and what to do was ours! There was really no choice in whether to do the intubation or not, Addie had to have it done to survive and now was safer than a few days from now because her heart would only grow weaker. We also felt that ECMO was not in Addie's best interest and to have her alive like that would only harm her and cause her suffering.
It was honestly like we were bulldozed over, my heart had never ached so much in my life! This entire situation was completely unexpected and caught our oncology team completely off guard... We were told in all the patients treated on the protocol Addie follows there were only four documented cases of heart problems! It wasn't something that we were prepared for because it wasn't something that they saw happen following the regimen she received! It was honestly like my insides were dying or that if they died they would feel better! How do you say good-bye to your child when it may be the last time you see them?! We prayed, prayed and prayed some more and we LOVED on her, held her hands and kissed her as much as she would allow! We talked with her about what was going to happen and I begged her to fight and I pleaded with God to never let her little heart stop beating!! We called our families and told them to come ASAP. It was the longest day... But in some ways we wanted it to last especially if it were her last, then in the next breath we wanted it to be over and to have her past this incredibly large obstacle she was facing!!
Addie underwent surgery around 4:00 today, we prayed over her and gave her all the love we had. She hadn't really talked at all up to that point because they had her gently sedated to ease her heart but she would open her eyes and acknowledge we were there! Just before the surgery was to take place she asked for Grace and Emma to come back again, it melted my heart!! The love she has for her sisters is so incredible!! I told Addie that Mommy, Daddy and sissys needed her and that she had to fight!! I told her that if she were asleep and Jesus came to her that she tell him she was still needed at home, that her family had not gotten enough of her yet, and that He would have to wait... Because Addie doesn't ask, she tells :)
Today I felt the Holy Spirit in our room, I felt The Lord watching over Addie and I knew that no matter how scared I was and no matter how the fear kept growing that Addie wanted to LIVE, she wasn't ready to say good-bye. Her strength and will to live is unmatched! Was I scared and did I doubt?! Yes and I was completely out of my mind at moments but the calm came, He was there!! God's will for Addie is great and He has never left our side and He will not forsake us!!
The doctors told us they would let us know immediately if the tube was in and working or if her heart had stopped and they were performing chest compressions... That was the longest 30 minutes ever, Reed and I just watched the end of the hallway awaiting the doctor or nurse to bring the news!! Thank you Jesus, Addie triumphed once again...because of you God she is still here with us, ours to love, hold and kiss! The intubation went perfectly and the catheters were placed without complication! Our nurse said it was one of the best/smoothest intubations she has witnessed! Dr. Tina said that Addie's heart welcomed the assistance and though she fought the anesthetic (like she always does) there was no fight after that!! Praise God!!
The love we felt from our families and friends today was unbelievable and I saw just how truly blessed we are to have such amazing support!! I love you (you know who you are), thank you for being with us today, for sharing in our fear and rejoicing in our triumph!!
Thank you to everyone who texted, commented and prayed Addie through this time!!
We are still deep in the woods but with God all things are possible!! My girl is truly amazing, my hero!! I love you Addie Bean, thank you for fighting for us...
Go Team Addie!
"he has performed wonders that cannot be fathomed, miracles that cannot be counted."
Job 5:9
Peaceful even when her body is at war!