CATCHING UP on Blog Posts…… I am a little behind on updates so here is to get you all up to date who follows the blog….. March 26, 2019…. Addi’s team of doctors are telling me they hope Addi can go home by Friday but can’t be very definite. Having a really hard time with fluid balance so they really want to see if they can get her electrolytes balanced and see if her body will start absorbing all of…
Not going home today…… Addi’s team of doctors are telling me they hope Addi can go home by Friday but can’t be very definite. Having a really hard time with fluid balance so they really want to see if they can get her electrolytes balanced and see if her body will start absorbing all of the fluid that’s in her body without opening her drain. In typical Addi style she has them stumped on a few things in regards to…
A LITTLE STROLL IN THE GARDEN TODAY…..I am sorry I did not post yesterday but it was my birthday and I spent the afternoon relaxing and spending time with my husband and kids. We had a great time at Dave and Busters laughing, bowling and eating good food. Thank you to my mom and dad for coming and staying with Addi while I enjoyed a day away from the hospital with my family. Addi has had a rough couple of…
NO EVIDENCE OF DISEASE…… I only have these words for today…..NO EVIDENCE OF DISEASE! Yes, you read it right. Addi is CANCER FREE! The doctor said that she will still continue to have maintenance treatment such as radiation and immunotherapy and possibly stem cell transplant (when her body can handle it) in the future but with her being disease free, her prognosis is excellent! I will not go into all of the happenings of this day because right now all…
AMAZING DAY AND GREAT NEWS…… So it has been an amazing day and I have to share all the exciting things that happened today. Addi had an ultrasound and the flow in her liver has reversed and is going the right way which means the clots and obstruction are GONE! Goodbye VOD! Still has some healing to do but it’s well on its way. Now the liver just has to continue to heal but lab tests are showing that all…
Another good day for the princess…… Addi had another good day! Haven’t seen playing in a while AND a smile! Memaw always puts a smile on her face. She has been in some pain today but we are managing that while trying to wean her down off the morphine. Hopefully Addi’s lungs will be in better shape and she will be stable enough to be sedated and have the MIBG scan that will show where her cancer stands after this…
We got a smile today….. Don’t have a lot to post today because it’s been a GOOD day! Addi slept well last night and had no respiratory issues. Only issue is vomiting and diarrhea because her stomach and bowels are just not working like they are supposed to. She’s thrown up all of her feeds so far but hopefully her stomach will start doing its job soon! She has slept a lot but been awake more than she has all…
Prayers for a quiet weekend……. Ok….so today….what can I say…..It has been a day!!! A lot of meetings with doctors today! First and foremost Addi seems better today and a little more awake. She has slept most of the day but was aroused enough to do a little OT up in her chair and has watched her iPad for a few minutes today! Praise the LORD! Last night we couldn’t get her aroused at all and was afraid she was…
Struggling today…… Addi has basically slept for two days now except when she wakes up and is crying. Her oxygen level is ok but her heart rate and respiration rate is high. Her breathing becomes shallow at times but they are monitoring her closely. Just when she starts getting better something else happens. It is the most helpless, heart wrenching feeling imaginable. She is 2 so she can’t really verbalize what she is feeling or why she is screaming…
Trouble with Facebook…… So there is something going on with Facebook tonight. I don’t know if I have been hacked or if it is a Facebook issue. I have tried posting on Addi’s page with no success so I hope everyone checks here. There is something really strange going on with my Facebook account and with Addi’s Journey page. It is not letting me see the post that I posted to her page but I am seeing others share it….
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…
Good, good day……… Monday, March 11…..Today has been a good, good day! Addi had the pic line in her arm removed, had the Foley catheter removed and after 17 long, hard days in ICU she has been transferred out of ICU and to a regular room! Can I get a shout of PRAISE!! She is not very happy and hasn’t smiled in days but it is coming!!! There were days the doctors did not think she would make it and…
Day 21……. Day 21……Happy Sunday everyone! Today Addi has been in some pain but they began giving her pain meds every 3 hours so that has helped tremendously! Again today her bilirubin has gone down a little more (YES!), her platelets were normal this morning but went from 50j to 28k this afternoon so she will get a platelet transfusion tonight BUT she has went from getting platelets 2-4 times a day to once a day so that is a…
DAY 20……GOOD NEWS! Early post today because I had to give this awesome PRAISE REPORT! Today marks 20 days in the hospital with 14 of those days in ICU! Received some encouraging news this morning. Her Bilirubin has gone down from 25.9 to 24.1,🙌🙌🙌 (first time it’s gone down) platelets were 45k so she doesn’t need a transfusion this morning (first time in 14 days!) and they are going to try and wean her down another notch on the high…
RESTLESS NIGHT….. Addi had a restless night last night. She was having delirium, hurting and just cried out in her sleep for hours. After hours of this, they finally gave her something to help her sleep. I’m a little delirious today from lack of sleep too. Lol! She has been hurting today and crying that her tummy hurt but had times of talking and even saw a little smile. I miss that smile!!! The delirium started again a few hours…
Frequently asked questions……..I am getting hundreds of emails and a lot of those are the same questions and/or comments. I am sorry but I just do not have time to answer hundreds of emails right now so I thought I would post here and answer some of those so you don’t think I am ignoring you. The most frequently asked question…..How is Addi?…..I know that everyone anxiously awaits an update especially right now that she is so sick. I cannot…
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…
DAY 14 in Hospital…….. Today marks 14 days in the hospital. I can’t even begin to express to you the emotions that we have felt this week as we have watched Addi fight for her life. She went from being responsive and breathing on her own to not being responsive and being on a bi-pap ventilator to help her breath due to respiratory distress. We are so devastated at all that has occurred this week but we are also hopeful…
Liver Failure……. To those who only follow Addi’s Journey from this blog, I am sorry for no update. It has been all I could do to write a 2 minute post on Facebook. I finally have the time and energy to post so I wanted to catch you up on what has happened over the past few days. Friday night Addi started going downhill and then Saturday morning she became unresponsive. Her little belly was very distended and she was…
Day 4……….Today has been a rollercoaster of a day. One minute she is doing ok and calling Memaw a silly baboon. The next minute she’s crying and upset. Her temperature has been up and down as well. It was as high as 103.3 at one point today. This is just side effects from the Immunotherapy and is expected but it is still hard watching her go through it. She had a few spells with her oxygen level that really scared…