NG Tube today
NG Tube today……
It has absolutely been an exhausting day and Addi is just mad at everything. She will just scream out in this high pitch shrill scream in pain and does not want anyone to touch her or even look at her. She had to get an NG tube put in today because she coughs every time she tries to drink or take her medicine and then throws it back up. It was horrible trying to get the NG tube down and then it came out and they had to do it again! It has just been an exhausting day….but she did do better with physical therapy today and actually participated. Bilirubin is down to 14 which is GREAT news and only one bag of platelets today plus she’s looking so much better so we are rejoicing for that.Talked with the doctor about “the plan” and she told me that Addi would have to be in the hospital to take the Defibrotide medication for 21 days that is supposed to reverse the VOD. They can not go forward with treating her cancer until the liver has recovered and no one knows how long that will take. She does not know the definite treatment plan but more than likely it will be MIBG radiation but it all depends on what the MIBG scan shows….this scan will show what her Curie score is that tells what stage the cancer is in. We want that score to be ZERO and show that there is no evidence of disease! After that scan they will then formulate a plan but it looks like she will more than likely only be able to do MIBG radiation right now which is a 4-5 hospital stay and then who knows from there. Liver failure has made it difficult to treat with the normal plan for Neuroblastoma because she has a high chance of going into liver failure again! So we know she will be in the hospital at minimum another two weeks. We are SO READY to go home but we are just thankful that we are closer to the end of this nightmare!! I am seeing the light at the end of the tunnel!
I am having a t-shirt made that says…..I will choose to find JOY in the journey that God has set before me! That is all we can do….trust, believe, find joy in everyday know matter what it brings and just have faith of a mustard seed that Addi is going to be completely healed. Day by day she is getting her miracle. I am so thankful that God has brought her this far and loves her more than I ever could. She will be running around like the sweet, wild child she is very soon!!!
Thank you again for all of the prayers for our sweet girl! We are so grateful to everyone who follows her journey and who is so faithful to pray! Much love….LaLa
T-Shirts: This campaign will end on 3/17/19 and ship on 3/25/19
https://www.bonfire.com/store/addis-journey/
https://www.bonfire.com/store/addis-journey/
For new followers who want to catch up on Addi’s story, please read the blog and it will bring you up to date. I’m sorry but I just don’t have the time to answer all the questions right now. 😊
https://addisjourney.com/…/addis-journey-welcome-to-add…
https://addisjourney.com/…/addis-journey-welcome-to-add…