Update for Monday and Tuesday

Update for Monday and Tuesday




Update for Monday and Tuesday……..

I am sorry I keep forgetting to update here for those who don’t have Facebook.  Here is my post from yesterday……

Today has been pretty much of a roller coaster ride kind of day. This morning Addi would not speak, make eye contact or interact at all. The doctors were first thinking ICU delirium but I asked the doctors to take her off of a pain med they put her on a few days ago and they did. She began to perk up and began communicating again. She has had these episodes all day where she does this thing with her mouth (can’t even describe it) turn her hands in, shakes all over and then tenses up. It is so hard to watch because you can tell she is in much discomfort. After all day of this and seeing her in excruciating pain, we finally think that it is constipation and have given her something to try and relieve that pain. She can’t use her stomach muscles due to the severe swelling and fluid so we believe she is using other parts of her body to try and relieve the pain. The doctors let her have a little water and juice today and she loved that. Can’t really give her much because she is already fluid overloaded so it is a very fine balance.

Wound care team came in and trying to do something with the really bad wound on her chin from the bi-pap. It looks painful. She can’t afford to get an infection so they are watching it closely. Some of her liver blood counts are improving where others are not. It is so frustrating but the doctors hope that by the end of the week we will see some improvement from the medicine Defibrotide for the VOD. 
Palliative Care team came in today to talk to me and that has started. It really bummed me out and I broke down crying but they promise it is just for comfort, pain control and more support for Addi and family. I refuse to give up on her and made them promise they would not either. She still has fight in her and I truly believe God is not finished with her yet!!! 
I have been a little down today. It has been 15 days in the hospital and Addi is still critical. Instead of doing a picture of her in so much pain and all swollen today, I just needed to see smiles, laughter, playing and her being a 2 year old so I did this video. It made me cry looking at it but I know God is going to get her back to that precious, happy little girl SOON! Sorry the video is 6 minutes long but so many smiling pictures I just had to add. That smile….
There are a lot of people asking about how Addi was diagnosed and how all of this came about. Here is my blog post that explains a lot for all of Addi’s new followers:
https://addisjourney.com/…/addis-journey-welcome-to-add…
Thank you all for the love, prayers and support. I know I say it every post but we TRULY appreciate every prayer being said for Addi. Keep believing God with us for Addi’s complete healing! I am waiting on that day with anticipation and prayer! Much love….LaLa


My Facebook post from TODAY……..

Addi is having a good day! It’s the best day she’s had since this all started 11 days ago. She has slept a lot today but she’s had less pain and been more responsive to questions. The swelling has went down a good bit and her belly is soft!! She has asked for water and juice and been able to hold it down. The respiratory therapist is trying to wean her off the bi-pap ventilator to see if she can breath ok with just the high flow oxygen and so far she’s doing really good. Today has been a quiet day and that’s a good thing. Every nurse, doctor and nurse practitioner have all said how much better she looks from yesterday. The doctors are saying we just have to wait and let the Defibrotide do its job with the VOD but that it’s just going to take time. I’m praying this is just the beginning of good days going forward. 
Today we had some VERY special visitors. Some of our favorite nurses from Scottish Rite Oncology nursing team came to see Addi. We miss them so much. We have great nurses where we are now but these ladies just know Addi so well and have been caring for her 6-1/2 months. My heart is overwhelmed to see how special Addi is to these wonderful ladies. They see so many kids but yet they love them all and don’t treat them as just another cancer kid. These ladies hands down are some of the most amazing, caring, loving and patient nurses I’ve ever seen. We feel extremely blessed to have them care for Addi and love her like they do. I love you and appreciate you so much Annah, Kelsey, Sam and Carmin (and all of our SR nurses)!!!! You are so very special to us. 
We are getting a lot of messages asking if Addi can have visitors. At this time they are limiting visitors to immediate family due to how critical she is and the risk of someone bringing in some of the nasty bugs going around. I’m sorry. Hope you understand. 
Please keep those prayers coming. We are seeing those prayers being answered and are continuing to anticipate and pray for Addi’s miracle. We are overwhelmed by the love and support for our precious girl! 
I am going to write a blog tonight and answer some questions we continue to get so check that out around 10:00 with the link below. Just too much to type here. It’s just so hard to answer every question and care for Addi so I’m going to try and answer those in one blog post. 
Thank you for all the love! ~LaLa
Frequently asked questions:
Address for cards: Please no gifts. Addi has so much and does not need anything right now.
Addi’s Journey c/o Leanne Masten
P. O. Box 99
Toccoa, GA 30577 
T-Shirts: New campaign started today…will end 3/14 and will ship 3/22.
https://www.bonfire.com/store/addis-journey/


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